Marlakins

Marla's adventure from Aplastic Anemia and beyond

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1. Patti said,

   July 10, 2006 at 4:55 am

   Hi,

   First, I want to thank Marla for giving me the opportunity to chronicle my mother-in-law’s treatment program for her MDS on her blog. My goal and desire is that those looking for alternative treatments can read and learn a little bit about the approach my MIL chose instead of the standard chemo offered to her.

   This initial posting will be what transpired in our latest visit with mom’s naturapath and chinese medicine doctor. I hope, over the next few weeks, to run a dated chronicle from the MDS Forum of posts I did there so that anyone who looks at this can get a bigger view of how long we’ve been at this and what the bumps along the way have been.

   Thanks again, Marla, for this opportunity.

   July 6

   Today mom saw Dr. Kou at his private office for the first time. Up until now we’ve been seeing him at the naturapathic college in Portland. But time is limited there. He can only see her for about 15 minutes and do about 30 minutes of acupuncture. So going to his private office will allow for time and in-depth treatment/discussions.

   We showed Dr.Kou her counts from last week. He did 45 minutes of acupuncture as opposed to the 30 we were getting at the school. He changed mom’s protocol slightly this week. He added a weird looking fungus to her diet. It looks kind of like dried, wrinkled potato chips. She’s to take two pieces a day and soak it for 2-3hrs and then eat it. He says it’s better in soup so that is probably what mom will do. He lowered the detoxifying herbs in her formula and also kept her on the blood building formula he gave me last week while she was getting a transfusion. I found out that the blood building formula is only made of three ingredients. Donkey skin and gelatin are two of them! Donkey skin!! He said it gets boiled in a very special way and then mixed with the gelatin and whatever that third secret ingredient is (his english is a little hard to understand at times). It’s then dried and put into powder form. So that’s her blood building formula.

   After mom’s appt. Dr.Kou and his wife and daughter took us to a chinese restaurant for lunch. He wanted to teach mom and I about cooking right and what to eat for her health. Wow! I don’t even know where to start with what we gleaned from that lunch hour. He must have had 10 or 11 different food dishes brought out to us. We sampled all of them. The only thing we really didn’t care for was the duck. There was a lot of vegetable type dishes. Celery. Lots of it. He said celery with the leaves still attached is very good for people with cancer. The celery was stir fried in sesame oil with peanuts, bean sprouts and a sauce. We ate stir fried chicken, while although spicey, was tolerable. I’m not a spice liking person but really it wasn’t bad. There was a tofu dish with mushrooms that looked like bean sprouts almost. One dish we really liked was rice noodles with bean sprouts, celery and some sort of gravy type sauce. More like a chow mein type sauce. Clear in color I guess. As we ate, he instructed on us on how we should eat. He included me because he said even healthy people should eat this way.

   Meat. All meat as long as it’s organic is very important. He said the trick is balancing it with alkalizing side dishes because meat is very acid. I think we will be investing in the PH Miracle book so we know which foods are alkalizing and which foods are acid. He said the biggest problem he sees is that people try to limit their diets to gain health when in reality they need to broaden them. So all organic meats are a must. He also mentioned celery, bean sprouts and rice noodles as a good staple for people. Stir frying is the best method of cooking he said because it cooks the food just enough for easy digesting without destroying all of the nutrients. I was curious about what oil to use for stir frying because I know olive oil is rancid and toxic when heated. I was shocked to hear him say plain old vegetable oil. He also said one can use sesame oil and peanut oil but plain old vegetable works too. When questioned him he said it’s a balance. Most people don’t use enough to be bad for them and the alternative (olive oil) is more dangerous when it’s heated. Interesting. That flies in the face of everything we’ve ever read or heard.

   I think what we walked away with the most was one word: BALANCE. He said everything in our bodies must be balanced. He said part of the reason mom’s HG plummeted last week was because her chinese herbs were not balanced for her body. He misread how toxic she was. He thought she was not quite as toxic but obviously the detoxifying herbs sent a ton of toxins into her blood stream to be eliminated. So, he adjusted her formula. Balance, between acid and alkaline. In chinese medicine, balance between the yin and the yang. Mom and I avoid that stuff mostly because of the spiritual connotations but I was reminded of a verse in Proverbs with all of his talk about balance. The bible says that, “a false balance is abomination to the Lord, but a just weight is his delight.” I believe God wants us to be balanced. I think that even applies to what type of medicine we use. Mom and I have tried to find the balance between traditional medicine and naturapathic/chinese medicine. She uses the neupogen to help her white cells but not the chemo which is more toxic.

   I will have to finish this entry later. But it’s been good to get it started.

   June 29-30

   It’s been a bit of a rough ride this week. There are ups and downs of natural medicine – just as with traditional medicine.

   Mom was exactly 4 weeks from her last transfusion today. At her regular doctor’s appt. yesterday we discovered her HGB was 5.9 and her HCT was 18.2! Those numbers absolutely hit me like a ton of bricks. I had to catch my breath before I could even tell her. And she felt terrible! Those numbers are lower than when she was diagnosed two years ago.

   Mom transfused 3 units today at the 4 week mark. I took the time to make an appt. with Dr.Kou at his private office (vs. the college). He and I got to talking and I told him about mom. He told me not to be discouraged. He had put 3 detoxifying herbs in mom’s last formula and he said it’s very common when the toxins get into the blood stream to leave the body for a person to get a little sicker. Having done this myself I understood what he meant. I just hadn’t connected mom’s low counts to detoxifying. Dr.Kou then had his wife whip up a small herbal formula for mom to take in addition to her current one. I made an appt. for 11:30 next Thursday and he told me when we’re done that he and his wife will take us to lunch and teach mom how to cook for herself healthy. I think she does a pretty good job but he’s talking about foods that heal the body. I was in shock. I know of no other doctor who takes his wife and patients to lunch for a teaching session. But Dr.Kou is just like this with everything. And his wife is just as peachy as he is. I wish there were the two of them in every state. What sweet people.

   So, like traditional medicine, we experience set backs. And hopefully the next three weeks will be a little better than this week.

2. GL said,

   July 11, 2006 at 9:53 pm

   Dear Patti,

   Many thanks for sharing your experience with us. There are many-many people taht want to know about the alternative approaches.

   Thanks for your kindness,
   G

3. Caroline said,

   July 16, 2006 at 6:44 am

   Hi Patti,

   There’s more than one way to skin a cat, isn’t there?

   Thanks for keeping up-to-date.

   Talk to you soon.

   Blessings,

   Caroline

4. Patti said,

   July 20, 2006 at 11:22 am

   July 18-19, 2006

   Yesterday mom went for a CBC at the 3 week mark from her last transfusion. We wanted to be careful that she didn’t tank like she did a few weeks ago. Two pokes, not a single drop of blood. Third poke, barely a teaspoon, but enough to test. Her HGB was 7.1, HCT 22.7. It was time for a transfusion. We went to get typed and crossed at the hospital lab. We have two girls there that are the only ones we allow to touch mom. They’re good. They couldn’t find a vein either. They finally settled for a small, barely visible vein in the bicep of her right arm. Poke. It took both girls. One massaging the vein and the other suctioning to get barely enough for a type and cross. The needle was in that bicep for five minutes. It took five minutes to get drops. And mom is badly badly bruised on that bicep. It hurts. She’s a tough lady. She rarely cringes. But that one hurt. Her face said it all. We are now faced with a major new challenge. Every vein in both of her arms is gone. They can pull no more. We’ve tried the tricks. Lots of water, heat on the arms. Nothing. 9 months ago I told her I was concerned that we should get something like a port or picc line put in her. She refused. I tried to explain to her what would happen. She refused. Today she wants to know why no one explained this to her. I did! But it wasn’t worth the fight. I let it go and tried to focus on what we’re going to do from here. And it didn’t matter even 9 months ago because when I approached the doctor she said no way to putting anything in mom. Platelets and white cells too low. What do we do now? Someone recommended her feet. Ouch.

   Off to see Dr.Kou. He is always such an encouragement. He tried to remind mom that just 3 months ago she was getting transfused every 10-14 days. Now she can go 21 days. It doesn’t seem like a lot but when you’re getting blood, every day and every drop counts. I think she felt better. He did some pretty intense acupuncture. Lots of needles in her belly this time. He also started her on a very very mild platelet increaser. He said it’s a chinese formula that they used during war times to heal wounds on injured military people. Even today, they do not give out the formula. They only sell it. This is the first chinese herbal treatment he’s given mom that came in a capsule. Normally he gives her powders. But this one he said he has to buy directly from China. We will watch mom carefully on it since he has concerns about treating her platelets this early in the process. We’ve also decided that mom should see Dr.Kou weekly for acupuncture for about a month so he can try and get her bone marrow moving a little faster. He also gave her more moxa sticks. Those things are wild. The ones we had previously smelled like marijuana. We always worried about using them at mom’s house. The ones he gave us tuesday don’t smell at all. The moxa is used to build different parts of the blood. It’s looks something like a cigar. You light it and place it very close to the skin at certain points the doctor gives you. She has a spot on each leg that is for white cells and one on her stomach for red cells. As the spot warms you use your fingers to massage the heat into the spot. Mom does it once a week for about 5 minutes per point. She’s not allowed to eat, drink or be exposed to anything cold (showers, water, etc) for two hours after she does the moxa or it will have the opposite effect of what we want and actually lower her counts. Moxa seems to be a big thing in Chinese Medicine. Mom’s regular naturapath also had her doing moxa before we started seeing Dr.Kou.

   We see mom’s doctor (hemo), Dr.Kou and her naturapath all on the 25th (next week). We will have much to discuss with the doctor.

   Mom’s transfusion today was uneventful, for which we are so thankful. We tried so hard yesterday to preserve the one vein she can get transfused into right now. She had no trouble today. Future transfusions are almost certainly going to be an issue now though.

   After two days of being out for 8hrs at a time, I’m exhausted emotionally and physically. I’m a little angry that mom wouldn’t listen to me months ago about what was going to happen to her veins and I’m a little angry the doctors didn’t do something in the beginning when she was diagnosed knowing how many transfusions she was going to need. But then the sad truth about them is they didn’t believe she was going to be alive for them to have to worry about all of her veins collapsing. They still can’t believe she’s alive and doing well.

   So, except for the new challenge facing us regarding mom’s veins and what we’re going to do, mom’s overall physical health is fairly stable. Although we’d certainly like to add more time between transfusions, I’m confident that will come if we stick with Dr.Kou and Dr.Reuter (both naturapaths and chinese medicine practioners).

   Until next time…….

5. Bety said,

   July 20, 2006 at 10:14 pm

   Patti, Sorry, I have no suggestions about your mom’s veins. When I was hospitalized a few years ago, the nurses left a needle in my vein with a stillet(?) to prevent bleeding. They used the same needle whenever I needed an infusion. In fact, when I was discharged and already home, I discovered that they had neglected to remove the needle. They told me to remove the needle myself, which I did…no problem. All the best, Bety

6. Lucy said,

   July 21, 2006 at 5:49 am

   Patti,
   Since January my Mom has had I think 5 PICC lines and 2 Triple Looms she now has a porta cath. At one point Mom’s PLT were 2 but they needed to change her line b/c she was having fevers and that wanted to be sure it was not an infection in the PICC line (it wasn’t) You may want to consider doing a directed donor platelet transfusion from one of her children. My siblings have been donating for my Mom weekly and she gets a jump into 60K she can only hold them for a couple of days though. If non of her children are eligible she can get HLA matched platelets and then have the procedure done that day. My Mom’s WBC was also very low but they assured us the procedure was done in a very sterile room. Just a thought , talk it over with the Doc’s.
   All the best
   Lucy

7. Andrea said,

   July 21, 2006 at 5:56 am

   Hi Patti, Wow you are a trooper! But about those veins–this is really going to sound bizarre but since you have a difficult situation I thought I would mention it. Rob had concerns about his veins from the very beginning–did not want a port. So during every transfusion, he would lay his hand gently over his vein and talk to it and send it “chi”. After every needle poke and/or transfusion, he would massage them with Rescue Remedy Cream (a homeopathic cream–he tried many but liked this one the best) and talk to them some more. He would thank them for their help and ask them to hang in there for as long as he needed them. He still does this 2 or 3 times after every needle poke.

   We’re 10 months post-diagnosis now. I’ve lost track of his transfusion count, but he’s at this point getting platelets every 2 weeks. His veins are bigger and more accessible than they were at the beginning. He also very carefully keeps track of which vein has “done duty” recently and rotates them.

   This may not account for his vein stability, or it may–but I thought at least you should know about it. If your mil wouldn’t not be open to such an idea, you could discreetly put your hand on her vein as she is transfusing–or at other times–and have a little chat with it.

   Best of luck, Andrea

8. Administrator said,

   July 21, 2006 at 11:34 pm

   Hi Patti:

   Wow, lots going on. Regarding the veins and PICC line, here are some of my thoughts.

   Now is the problem that they just can’t find any veins, or are her veins not taking the needles and transfusions anymore? There is a difference with that because if the veins are all damaged, then it’s just plain hard to poke and then they just collapse when used. However, if they’re just hiding or shrinking, then if could be a matter of coaxing them out. If your MIL has only been having transfusion for the past year and has not used hard drugs through her IV’s, then my guess is that her veins are not too damaged yet.

   I’m not sure what all it is that you’ve tried for your MIL other than the water and warm compresses. But one other thought is exercise. Basically walk each day to help encourage blood circulation which in turn plumps up veins. Another type of exercise she can do is use a squeeze ball. I used those little squeezy things you hold in your hand and just squeeze it about 10 times every now and then throughout the day. That helps to strengthen the arms and plump up the veins and make them a bit stronger. Of course with the exercise, make sure she gets enough fluids so she doesn’t get dehyrdrated. Whenever she drinks water, it’s a good idea to add a touch of salt because with the added water, she will lose sodium. I’m guessing that her diet is pretty good, so I won’t go there, but just wanted to mention that good nutrition should help with the integrity and elasticity of her veins.

   Regarding using her veins, I was very picky with how and when my veins were accessed. For the most part, I only allowed finger sticks for CBCs. No need to poke a vein for those provided the doc doesn’t have to send her blood out to another lab to count. I also learned which types of tests they normally ran on me, so that I could monitor how much blood they drew from me. I you don’t pay attention, many times they draw more blood than they need. For type and crosses, I insisted they only use a 24 gauge butterfly needle on the backs of my hands. I reserved my big veins for transfusions. I found about 6 good sites on my arms which I would rotate for each transfusion. My anticubital veins have always been very easy to find, so I reserved those for the not-so-hot nurses (made it easy for them to get it in one stick). I reserved the harder veins for the sharp-shooter nurses. This way I was able to allow each vein at least one or two months rest before getting poked/accessed again. While the IV was in, I was careful not to bend my arms where the IV was to avoid any rubbing that might form any scarring. After the IV was removed, I would raise my arm and apply a little pressure on the site. I raised the arm for a minute or so to allow the fibers in the veins to align themselves back in the right direction (facing up towards the heart). Remember that blood flow in the veins should move in the direction towards the heart. You don’t want fibers facing the wrong way causing obstruction in the veins. No rubbing the site. When my platelets were very low, I left the pressure bandage on for many hours to avoid as much bruising (blood pooling) as possible.

   As far as a PICC line or any type of central line, know that they are very prone to getting infected, particularly if you have a low white blood count. Especially the ones that stick out of the skin. The port-a-cath is placed under the skin, so isn’t as prone, but is a more complicated procedure to install and thus greater risk of complications. However, whenever any line is hanging out of the body, there is a “constant” opening for infection. And that’s what happened to me after my PICC was in for about 3 months. The site must be kept clean and dry, however with a tagaderm (plastic adhesive) on top all the time, and the fact that the body naturally sweats, it’s hard to keep it dry. And that’s how my line started its infection. I was sweating under the tagaderm when I went out to walk, which in turn caused my skin to become irritated, which in turn made the skin break and bacteria to get in and multiply. Next thing I know, it’s in my PICC line and my arm was a “mess.” The infection was very painful, and uncomfortable, on top of having a fever. And for me, the PICC line never felt comfortable. My arm was always somewhat stiff. I know there are people who love them, but for me, it was awful and a blessing when it finally was removed. I knew that the line was made of silicone, so that knowledge was another thing that upset me cuz I felt that I was likely absorbing silicone in my body as well. Also, once my line was removed and my infection under control, they did an ultrasound and found that the vein where the PICC line went through was now completely blocked/clotted off from my elbow to my armpit. Blood would not flow through it anymore even w/o the PICC there. My doc wanted me to have another one installed, but I asked what happens if that one clogs up, too? So I opted to be poked for each transfusion. I did that for the next 16 months, and it worked fine for me after I got my routine down. Then after I became independent of transfusions, I did monthly phlebotomies for 2 full years to reduce iron overload–more needle pokes. . . But my veins have held up just fine. They are still flexible and plump and good enough that the nurses usually only have to stick me once.

   Hope this helps,

   Marla

9. Patti said,

   July 22, 2006 at 3:08 am

   Hi Marla,

   Here’s our situation. Mom’s been having CBC’s and transfusions for two years. We are very picky about how much they take because we feel like you do. Mom has a major vein in each arm that she has always reserved for her transfusions. Not really intentionally in the beginning it just worked out that way. On her left arm it got to the point where they couldn’t even get saline to shoot through the vein anymore. They said she has too much scar tissue. We moved to her right arm and started as close to the hand as feasible and have moved up 1/16th of an inch or so each time. That vein is also almost done. We’re getting to the end of it. But I think we still have some time left with it. The biggest problem we have is CBC’s. We asked about doing it in the hand and they said no. The one vein they would have used they said runs into the vein that is totally damaged and has no blood flowing through it anymore. I don’t understand why they wouldn’t try the other veins in the hand. Mom’s veins are extremely prominent. More so than anyone I’ve ever met. She’s slender and her veins just stick out like crazy so it’s not so much being able to find a vein as when they stick her literally nothing comes out. The first two sticks she had at the doctor’s office on tuesday not a single drop came out. The third stick she barely got a teaspoon or less. When they did the type and cross stick at the lab they weren’t able to get much out either. Literally there was one girl massaging and pushing the vein while the other was trying to use suction to get the blood out. And that vein was in her bicep so it was higher than all of the damaged veins so I don’t understand why they couldn’t get any out. The only thing I could figure is her blood volumn was so low there just wasn’t much to get. I don’t know. What are the anticubital veins? We have them use a butterfly on mom for all of her pokes because it seems to be easier on her veins and causes less brusing. Although, we didn’t start doing that until recently so she’s bruised pretty badly. She had blood drawn a year ago at the creases of her arm that she’s badly bruised from still. They just never went away or maybe are just badly discolored now. Also, the major vein in her arm crease was blown out by a bad nurse and she’s never been able to use that vein again. It’s way to painful.

   Dr.Kou and I have her drinking 10 cups of fluid a day with most of that being water but he also wants her to drink soup and 3oz. of juice or so. So if there were an issue with dehydration I think that would be taken care of by the extra fluids.

   Of the options available for a single source for her pokes a PICC line is my least wanted. Like you, I believe there is just too much room for infection. And I really think mom wouldn’t like having something outside her body. What options does that leave us? And, what has the least risk of infection for her? I think we are not going to be able to avoid the inevitable right now but I want to have a good idea what’s best so the doctor doesn’t direct this one because I don’t trust he’ll do what’s in mom’s best interest.

   Thanks.

   Patti

10. Bety said,

    July 23, 2006 at 10:10 am

    What are your mil’s wbc’s and platelets like? Are these a problem? Do the regular transfusions help bring these counts up? I ask because my husband’s wbc counts are now 1.0.. and his hgb is only 7…He would like to take a long plane trip but am afraid of infections. Our hemo is concerned and feels he should have his first tx before the trip. I wonder if we should wait for cbc results to see if they went up after the tx.. How soon do they normally take effect? I would appreciate your feedback. Frankly, I would prefer not to travel, but my hus wants to visit his bother, etc. I am afraid of taking an unnecessary risk. I hate to bother you with this, especially since you have your hands full right now. All the best, Bety

11. Patti said,

    July 24, 2006 at 2:33 am

    Hi Bety,

    Mom’s WBC’s and platelets are very low. Her WBC’s run 1200-1600 on a good day and her ANC’s are almost always 400. Her platelets run about 6000-8000. I would not recommend that your husband travel on a plane with a WBC of only 1000 and such a low HGB. A RBC transfusion would bring his HGB up but it won’t help his WBC’s much. Mom’s WBC’s usually go down for about a week after a transfusion because her body is “fighting” foreign blood. They usually go back to the 1200 range after a week. If your husband is insistant on travelling then I would recommend he get a transfusion about 3 days prior to travelling and that he wear a mask to protect himself from infection on the airplane and anyplace else he’s likely to encounter close quarters with people. Keep in mind that it’s very common to get a cold when travelling by plane. I would make sure you don’t stay gone for too long and make sure of a good hospital and the name of an onc./hemotologist in the area you’re going to.

    Please feel free to contact me anytime. That’s part of the reason Marla has opened this blog space to me. So we can freely discuss without the worry of people being “put off” by our conversation.

    All the best,

    Patti

12. willie said,

    July 24, 2006 at 7:27 am

    Patti My wife has has a Hickman line for just over 1 year now. It needs to be flushed and sealed every day but she does not have any problems with blood draws. When she initially left the hospital she got an infection at the upper end of the line. It was treated with an antibiotic that I gave her for 14 days via a home pump into the line. She has not had an infection since.
    Willie

13. Bety said,

    July 25, 2006 at 8:51 am

    Patti, I really appreciate your input regarding tx, and travel, etc. If Ed gets his first tx this week, I would like to wait to get another cbc to see how he reacts. The mask is a must. At this point, I am very opposed to a long plane ride (Israel). I hope he does not insist. I think a copy of your remarks might influence him. There is a hematologist doing research on mds not far from where we hope to stay. I would try to contact him, ahead of time, if we finally do travel. Your mis is in my prayers. All the best, Bety

14. Patti said,

    July 25, 2006 at 5:57 pm

    Bety,

    Wow! Israel! You are gutsy folks! Our church takes a group to Isreal every two years. I think they’ve only had to cancel twice in 20yrs because of wars going on. It’s a neat trip from what I’ve seen. Any particular reason your husband wants to go now? It’s such a hot spot for anti-Americanism right now in particular. Is that where his brother lives? I gotta tell you, besides the obvious war risks right now, I would not travel that far from home with where your husband is at with his MDS right now. Travel in the US? Sure, why not with precautions? But medical care in other countries is not what it is here. What if he needs blood while in Isreal? Just the screening process is different enough to make a difference. They may not leuko deplete the RBC’s which could cause him to have a reaction he wouldn’t otherwise have if he were here. Flying with low platelets/RBC’s will impact his system even more. Especially on a flight as long as one to Isreal. I would just really encourage him to come up with an alternative. Perhaps his brother could fly to NY and you guys could meet him there? As least that way he’s not leaving the country and NY has some good hospitals should the need arise. I dunno. Just sounds very risky to me.

    Take good care. I’m off to a busy day and will hopefully have something new to post here by Thursday.

    Patti

15. Patti said,

    July 26, 2006 at 10:22 am

    July 25, 2005

    We saw both naturapaths and mom’s hemo/onc. today with some interesting things taking place. Dr. Reuter (mom’s regular naturapath) is working hard on getting her liver in better shape. She’s taking quite a few homeopathic remedies for that. I always thought homeopathy was kind of hokie until I started using it a few months ago. When I saw what started happening with my lymph glands and sinuses I was astounded. So, I believe that this stuff will help mom’s liver. Marla suggested some liver tests and we will have those done in a few weeks. Dr. Reuter’s take on mom’s veins was that she go for a port-a-cath. She preferred the PICC because it was less invasive and felt like she could stave off any infection risk but felt like mom having to worry about it constantly getting wet, etc. was more than she was going to be able to handle. With that info we went off to the hemo.

    Hemo had no issue with giving mom a port or picc but was really pushing hard for a picc. My impression was because it’s easier for HIM if mom has a picc. Well, who cares about his convenience???? He referred us to the radiologist that would do the procedure and we hope to have an appt. before she’s due for her next transfusion. He is concerned about her platelets but was okay with doing family donations if the boys were a match and said there was some merit to doing that at this point.

    Off to Dr.Kou (chinese medicine doc). He is spending the next four weeks really pushing mom’s body to increase it’s blood production. He did quite a bit more acupuncture, more moxa and a little Qi Dong? I think that’s what it’s called. He also did this wild thing with mom that he said was meant to transfer some of his energy to her and push the bad energy (chi) out of her body. We have to be careful with this stuff because of the spiritual influences it can have. He did some weird hand movements all around her body and particularly in her kidney area. He asked her to do the Qi Dong daily for 15-30 minutes to get her blood moving. At first he said to get a PICC line because he said it’s hard to get blood out of a port (easy to give blood through it though) and then changed his mind and said to get the port. Just too much risk of infection with the picc. I’m hoping he’s wrong about saying it’s difficult to get blood out of a port. He said in China it was hard. Maybe it’s different here.

    Ultimately, the decision is up to mom. She doesn’t like the idea of being poked three times in two days when it comes to CBC’s/transfusions but she really doesn’t like the idea of a picc being on the outside of her body. So she settled on the port and our next challenge is to convince the surgeon/radiologist to do that procedure. Dr. Reynolds did say they would have the final decision based on how low mom’s whites and platelets are. Maybe our wishes are a mute point but we’re going to do our best to convince them it’s what we want. Dr. Reynolds (hemo) did admit that although a port is more intrusive to put in, it is much less likely to get infected and have problems. Ahhh, there’s the truth!

    As a side note – I had acupuncture today also. Afterwards she did a point that I told her she’s never allowed to do again! She stuck a needle in my pinky on the edge of my cuticle!!! Ouch!! Ouch!! Ouch! She just stuck it in and pulled it out she said because it’s painful and that will do the trick. She started aiming for my left pinky and I about kicked her! Then she wanted to do my pinky toes. No way, no way, no way. I am a weenie and no way. Did I say no way??? She also said she could bleed those points. Oh, that sounds so lovely. Poke me and squeeze the blood out. Isn’t that what I do when I check my blood sugar? Yes, but it hurts much worse in the pinkies. Anyone who is brave enough to get that done is a giant in my eyes! I told her maybe I’d let her do it again next time. Maybe not….

    Until next time…….

    Patti

16. Bety said,

    July 27, 2006 at 9:42 am

    Patti, Ed and I have been to Israel many many times. We both have elderly relatives there who are not able to travel. If we can get Ed’s wbc counts,etc. up, I might be willing to make the trip. As far as good hematologists, proper treatment, etc. that is not a problem. But, I would not like to use up any Israeli blood right now…..with all the casualties, they need it more than we do.
    I am following your mil’s progress closely. She sounds pretty gutsy. By the way, what is a PICC line? Does she still get neupogen for her wbc’s?
    I liked your acupuncture story. I don’t think I could take the treatment. All the best, Bety

17. Bety said,

    July 28, 2006 at 5:07 am

    Patti, I understand that milk thistle is being used to help the liver. Has Dr. Kou ever suggested this supplement? All the best, Bety

18. Patti said,

    July 28, 2006 at 9:33 am

    Bety,

    Milk thistle is very good for the liver. There is some in mom’s chinese herbal formula. Her formula is about 10 or so herbs blended together in just the right amounts.

    A PICC line is a silicon line that is inserted under the skin into a vein and then the tube hangs out of the arm with an access point on the end so that blood can be drawn or given through that line. It allows people to not have to be poked directly into veins.

    Yes, mom is still taking neupogen shots. She does them twice a week at home and this next week she will be taking them daily to see if we can get her ANC’s to 1000 so she can have a port installed next week.

    I’ll write a note about our adventure in the emergency room today – maybe tomorrow. I’m too exhausted tonight.

    Take care.

    patti

19. Bety said,

    July 28, 2006 at 10:25 am

    Patti, have the doctors considered using nuelasta instead of neupogen? I understand that it can be given once every week or two like arenesp instead of procrit. All the best, Bety

20. Patti said,

    July 29, 2006 at 9:45 am

    Hi Bety,

    We haven’t talked to the doctor about neulasta. We’ve not been anxious to rock the boat since mom’s been doing okay with her current regime. However, your note has prompted me to at least talk to the doctor about it. I know it’s quite a bit more expensive and we’ll have to see if mom’s insurance covers it. It’s possible that’s why they’ve never mentioned it to us. They may already know it’s not covered or something. But it’s a good thought.

    Take care,

    patti

21. Patti said,

    July 29, 2006 at 10:08 am

    July 28, 2006

    There’s so much to update and what feels like so little time. I’m going to try and condense as much as I can in this post.

    As I was trying to schedule with the surgeon for a picc or port to be placed for mom next week I mentioned to the doctor that mom had been experiencing angina for the past 7 days that was not going away with nitro. And she hadn’t told us or the doctor even though she’d seen all of them (the docs) two days prior to this. Needless to say, he freaked and said he would do nothing until she was evaluated. The oncologist sent us to the ER yesterday for a full heart evaluation. The good news is, there is nothing wrong with her heart and she does not have angina. The bad news is, it would have been nice if we had figured that out before spending five hours in ER.

    As they were preparing to do a chest x-ray mom asked me what that would show them. I told her they would be able to see if there’s fluid or something in her chest. Well, that set off a light in her head and she told me she thought that’s exactly what was wrong. On the previous tuesday her naturapath took her off of her kidney supplement (kidney activator by natures sunshine) because she wasn’t sure it was doing any good. She wanted mom to stay off of it for 4 weeks and report back if she noticed a difference. At the same time, Dr.Kou told her she had to start drinking 10 cups of fluid a day. Guess what? She was water logged to say the least. Her kidneys are not functioning real well and her body just couldn’t handle the extra fluid. This has happened before under different circumstances and the pain was more abdominal then heart. Yesterday morning (before the ER trip) she had decided to start taking the kidney activator again and she had started feeling better and better throughout the day. By the time we were in ER she was almost totally normal again. By last night she was perfect. That little capsule that she takes once a day to help her kidneys was doing a whole lot more than any of us thought it was!! After all of the ER stuff we went to the hospital cafeteria to grab a quick dinner as neither of us had eaten. I jokingly told her the next time she wants to go out to dinner alone to let me know because I’d be happy to take her without going to the ER first! She got a good laugh.

    Today I spent nearly 8hrs on the phone trying to take care of things for her to get a picc (short term) and a port (long term) put in. So although I was home, my kids sure didn’t have much of mommy today. The decision was made to install a PICC for one week. She will give herself daily neupogen shots to try and increase her ANC’s and the next week she will have her regular RBC transfusion through the picc and a platelet transfusion via the picc just before they install a port. They will then remove the picc. Although I wanted to avoid the picc completely the surgeon guy wanted it as a “bridge” between the two procedures. Also, because there is no guarantee that she’ll have enough ANC’s to even get a port. We have decided to go with HLA matched platelets because I am having a very difficult time getting this family donation thing worked out and to be honest, I just don’t want to put any more time into it. I will be away from my kids for 3 straight days twice over the next two weeks. What little bit I’m home they don’t need me on the phone trying to figure this stuff out. I was home today, but not really here for them. They wanted me to paint with them and all I could do was talk on the phone to doctor’s, hospitals, red cross, etc. Something just has to go and figuring out the family donation thing is it. I am worn out beyond belief. When we got home from ER last night I just cried. I told my husband I had no reason to be crying I was just exhausted. But going through all of that in ER and the stress of not really knowing what was wrong for a couple of hours was more exhausting then I’d probably like to admit. Ron’s sister was an absolute mess. She was falling apart all over the place. It’s good my husband was with her. He has 46 yrs of knowing how to work with her.

    Mom is continuing to see Dr.Kou weekly for a short while and that is going well.

    Guess that’s it for now.

    Patti

22. Bety said,

    July 30, 2006 at 12:48 am

    Patti, Just a thought….My husband and I take our b/p a couple of times per day with a wrist sphigmonometer. It also gives us our pulse rate. We try to use biofeedback to help influence our b/p, trying to imitate the feeling when it is low. Also, in case hypertention is a problem, we have discovered (family advice) that juicing carrots with celery tends to bring down the b/p to the extent that we have reduced our b/p medication considerably. An added dividend, it tastes better. My h has been juicing the beets with lemon. He does not mind it, but has had to eliminate the olive oil. By the way, many b/p medications as well as many antibiotics reduce blood counts as one of their side effects. One should avoid tyelenol, aspirin, acyclovir, alcolol, seltzer water with quinine, etc. You are all in our prayers. All the best, bety

23. Patti said,

    August 4, 2006 at 6:44 am

    August 3, 2006

    Today is exactly two years from mom’s official diagnosis of MDS. We thought she had a death sentence with only months to live. But God has proved otherwise for which we are so thankful.

    On Tuesday I tried to talk mom out of getting a picc by explaining that she’d only have three more pokes before a port could be placed next week if she could just wait it out. She kept looking at her veins and all of the massive bruises on her arms. I thought I almost had her convinced and then she said no, she really couldn’t take anymore. I think it was as much mental as physical.

    So today we went for picc. Things did not go very well. We had wanted the picc in her left arm since she is right handed and we wanted to leave her right arm as mobile as possible. Ya know, hair washing, teeth brushing, the important things in life! Unfortnately, she got poked ten times in her left arm. The veins would roll, some were blocked, at one point they got the picc in and as they threaded it they hit a clot or something and couldn’t get it any further and had to pull it out. I knew at the one hour mark (the procedure was only supposed to take a 1/2 hr) that something wasn’t right. They finally went for her right arm and got a vein on the first try. Her left arm is bandaged tight but will still be badly bruised from this.

    After 1 1/2hrs they brought her to recovery and let me be with her. All of a sudden her right arm swelled to half the size of a football right before our eyes! There was concern that she was bleeding internally, but it ended up just being severe tissue swelling. They had both arms wrapped in lots of ice for two hours. They did an additional ultrasound on her right arm to make sure the picc was okay and placed correctly and nothing bleeding. I was able to be there for that and could see things pretty clearly (thanks to all those baby ultrasounds!). Things looked good. So six hours after arriving for a 1/2hr procedure we went home.

    I am increasingly concerned about next weeks port placement. I’m having a hard time getting the doctors to coordinate and talk to each other to tell me how many units of platelets they want her to have, etc. They did tell us she has to be done at the hospital because they do not have the facilities for transfusions at this office. Bummer. We were really hoping to avoid the hospital setting for infection purposes. And there is the question about whether daily neupogen shots will get her ANC’s to 1000 also. We will know that on tuesday the 8th when we see the nurse practioner.

    Mom is resting now and I’m sure she’ll be a site for sore eyes tomorrow with those arms. Oh, I also get the pleasure of changing her dressing on Sunday on her picc. Oh, I don’t do well looking at this stuff. God, help me to not get queazy. Hopfully since I *have* to do it it won’t make me stomach queazy. Usually just talking about needles makes me sick.

    As Marla and I have done some chatting regarding mom’s veins I wish there were something we could do right now to fix it. In light of the fact that they had difficulties in her left arm, it makes me think there is something wrong throughout her whole body with vein integrity. I believe it all goes back to diet and nutrition, but is it too late for that? I don’t know.

    Until next time,

    Patti

24. Patti said,

    August 10, 2006 at 11:43 pm

    August 5-9

    I ended up speaking to the radiologist that did mom’s picc several times on saturday as there was some concern if we should have her get platelets. In the end, we stuck it out. However, both the radiologist and I felt like trying to put mom through having a port installed tomorrow was NOT a good idea. He totally agreed with me and we have postponed a port indefinately and will reevaluate the situation at a later date. I also told him IF she gets a port I want her in the hospital for a 23hr admit because this was just too traumatic. He said he totally agreed and would not do the procedure without her being admitted. I felt a great amount of relief knowing we wouldn’t be putting her body through something else this week.

    Mom finally stopped bleeding from her picc line placement on Monday night. It took 4 days for that bugger to finally quit bleeding. I have been changing the dressings daily to keep it clean until the bleeding stops. I am a queasy one, but somehow when you HAVE to do something you find it in you to do it. I am thankful I haven’t passed out yet. Her bruising from the picc placement procedure is extensive. She is literally bruised from her shoulder to her elbow on her left arm. The darkest black and purple you ever saw. Her right arm is bruised pretty big but not as bad as the left.

    On Tuesday we used the picc line for the first time. I am thankful for the warnings we had about making sure it could be used because I double checked that each place we had to go had a nurse that could use it. We used to be typed and crossed at the hospital outpatient lab for transfusions and we will no longer be able to do that. Which is fine. We found a better place with nurses we like much better! It was no trouble using the picc line and mom was greatly relieved that there was not the trouble and question of which vein to use and if they could get blood out of it. So that part was much much better!! I wish her blood tests results were that good.

    Three weeks since her last transfusion her HGB was 6.3, HCT 18, Platelets 6000!!, and ANC’s 100. Yikes!!!! While her hematologist blew off any connection between her drop in hemoglobin/hematocrit as being connected to the picc insertion, her naturapath and chinese doctor said, “No way! They are absolutely connected!” So at least for now we think she won’t go that low again with her reds. Her platelets are another story. She “lost” or dropped, or whatever happens to platelets, 2000 more. We’re hoping that is also related to the procedure but really won’t know for another 3 weeks until we see if they pull back up to her usual 8000. However, her ANC’s were another story. It appears that the neupogen shots mom has been giving herself are no longer working. She had shots five days in a row before we had her tested on tuesday and she only had 100 ANC’s??? She wouldn’t have been able to have a port placed anyway tomorrow because the surgeon said she had to have a minimum of 1000 ANC’s. That’s why she was giving herself shots daily instead of just twice this week. In three weeks we are going to retest this theory by having her give herself 4 shots in a row and then doing a CBC on her normal day. If she’s not up to at least 400 or 500 then she will stop doing the neupogen shots and we are in a world of hurt! I cannot fully remember what the minimum ANC’s is required to keep infection at bay but I seem to remember that 200 was when they start putting people on prophylactic antibiotics. Since we will not do antibiotics (they present their own issues) we will have to be very diligent with her germ care and pray for God’s protection. I do not know how long we can go with 100 ANC’s and not get an infection. I am going to do some research when I’m done here.

    We also did a liver test and ferritin test on Tuesday. The liver functions were fine but her iron is at 3018 now. Up about 800+ in just under six months. The doctor thought part of the kidney issues could be iron building up on the kidneys. We actually agreed with him on this issue and they have applied for mom to get Exjade for chelation of the iron. Although, I’m not sure her iron will ever go below 3000 I think it will keep her from gaining anymore. I say that because if her body eliminates 250mg or so per month, she’s going to take that much in during a transfusion every 3 weeks. So I don’t know that we’ll reduce that number but maybe we can keep it the same and not cause anymore damage. I have always read on the MDS forum that organ damage from iron overload takes ten years. I believe someone should be very cautious using this as a guide because we did and it has damaged mom’s kidneys. If we had started chelation 6 months ago when the doctor recommended it at 2000 we may have avoided this. Mom didn’t start having kidney troubles until 6 months ago when she went above 2000. See the connection?

    We saw the naturapath and chinese medicine doc on tuesday also. The naturapath does not concur with my “circumstantial evidence” that mom’s kidneys are not functioning well because everytime she goes off of her kidney supplement or doesn’t take a lasix by the nighttime she’s in pain from the fluid around her heart and lungs. I don’t know how much “evidence” she needs but as far as mom and I are concerned we have enough evidence to suggest she should stay on her kidney activator so as to avoid drowning in her own fluid. Although I fully believe in naturapathic medicine, I still believe that one has to be proactive and really listen to your own body. This is one of those times where I don’t care if someone doesn’t think A + B are connected. Both mom and I see it and she’s in her body every day so I am trusting her listening to her body for her needs. I think one has to be careful putting ALL of their trust in any doctor – natural or conventional.

    When we got to Dr.Kou’s office and went over the test results with him he was visibly shocked. He is very concerned about her platelets and said that she is a real risk for a stroke right now. He did not do acupuncture because he didn’t want to induce any bleeding. He did do an hour of moxa at different acupuncture points on her body. Mom and I both notice that the moxa does help. We can tell because when she’s really low in blood, after the moxa her lips are pink again and even her face gets a little pink. He doesn’t do any moxa near there. Our understanding is that moxa gets the blood flowing better throughout the body (gets rid of stasis). It makes sense she’d look better then because the blood would be flowing better. So for now, Dr.Kou has mom doing moxa everyday instead of once a week in an effort to keep her blood moving and not stagnating. He also gave her an “emergency” pellet for the platelets to control any bleeding that might happen. He told her she’s not allowed to take any pills, capsules, etc. She’s to empty her capsules or smash her pills into food. He’s concerned about her esophogus bleeding with her platelets so low. He changed her formula to try and work through her platelets better but he can’t do much or he’ll cause bleeding and he doesn’t want to do that.

    One last thing before I end this. The hemotologist said that he thought the reason the neupogen shots weren’t working anymore is because the disease has progressed to the point where it has filled mom’s bone marrow. Of course, the only way to find out is to do a BMB but that is not an option for us because of platelets and white cells. However, in light of recent events I can’t say I disagree with him. So where does that leave us with natural medicine as our “cure?” I’m not sure that curing mom’s MDS was possible at the time we met Dr.Kou and her naturapath. By that point, mom’s MDS had had a full year to establish itself in her body. Even with what she and I were doing. I think she and I were treating “symptoms” because in western medicine that’s what we do. With the chinese medicine they went after the source. If we had seen him earlier, would chinese medicine have healed her? No one can answer that question. But I can confidently say that the natural medicine bought mom two years of good health. She only very rarely felt just downright tired and not well. If I added up all of her “bad” days, maybe it would total 2 weeks. And when those days are just a day here and a day there, what healthy person doesn’t have that? So I believe that with the naturapathic medicine we kept mom’s body healthy enough to withstand and slow down the progression of her disease. I do think there will come a point when it fully takes over and there won’t be anything we can do about it. We will always say, “I wish we had met Dr. Kou and Dr. Reuter earlier in this journey.” How can we not seeing how much they have helped her? But I would be lying if I didn’t say I do believe mom’s life is winding down and the disease has taken ahold.

    Until next time……

25. Caroline said,

    August 11, 2006 at 9:53 am

    Patti.

    I’m so sorry for all of this.

    You have done everything that you can do. I believe that miracles can happen. Don’t give up. Take care of Mom and keep loving her.

    Blessings,
    Caroline

26. Andrea said,

    August 11, 2006 at 1:37 pm

    Patti, You are a real hero.

    The ultimate tragedy is not “death” but lack of love. Your faithful loving care of your mother-in-law, even when times have been difficult to say the least, is an eternal jewel that will transcend everything, no matter what the earthly outcome.

    As an AA wife, I am very interested in your comments about natural vs. allopathic medicine. They are very well-thought-out and realistic, and will help me support my husband.

    All the very best, Andrea

27. Bety said,

    August 11, 2006 at 9:55 pm

    Dear Patti, I am very sorry to hear about your mil’s recent problems. Someone I know had a 300 anc and wbc hovering around 1. After one injection of neulasta, the wbc went to over 9 (two weeks after the injection). Two weeks later it was at 2. Neupogen just brought his wbc up to 1.4. All the best. Bety

28. Bety said,

    August 12, 2006 at 9:04 pm

    Dear Patti, I found out that in the above instance, the person’s platelets dropped from 93 to 63 after neulasta. Two weeks later,they had recovered to the person’s normal low range, around 93.
    By the way, my husband had his first tx today. His hgb was 6.7 yesterday. I was a little disappointed in that , so far, I have not observed any change in his condition, i.e. skin color, energy level,etc. Even with the 6.7, he seemed to feel fairly well. The only changes I had noticed,before the tx, is occasional dozing and extreme pallor. At the blood bank, there was a patient receiving tx who claimed that her hgb had been as low as the 2.plus something range because of heavey menstrual bleeding. Another time it was around 4.plus. She does not have mds….some other malignancy. There was another woman with difficult veins. She had a port put in a few months ago and is quite happy about it. There is so much to learn about mds. The more I learn, the more I realize what a novice I am. I hope your mil is doing better. She is in my prayers. All the best, bety

29. Patti said,

    August 12, 2006 at 11:00 pm

    Bety,

    It usually takes my MIL about 48-72 hours to feel better after a transfusion. Give your husband a few days and make sure he takes it easy. He should begin to look better and feel better in a day or so. Thanks for praying for mom.

    Patti

30. Patti said,

    August 13, 2006 at 1:55 pm

    August 12, 2006

    I have to express some frustration here. I have done much research over the past fews days trying to determine how high mom’s infection risks are (like, is she guaranteed to have one by a week?, etc.) and this is what I’ve learned. Her risk now with ANC’s of 100 is no greater or less then her risk was at 400 or 500 ANC’s. I guess that is somewhat comforting. What was new is that her greatest risk is really her platelets being so low and her bleeding out one day. At last check her platelets were 6000. The other night her gums bled for 4hrs after brushing her teeth. My little sister had a daughter that died of leukemia when she was 11 so I called and chatted with her for awhile. She’s also married to an SDA doctor who is a health nut. She said that if mom starts getting platelets they will only last so long before they won’t do any good anymore. For her daughter, it was 3 weeks. After that, they stopped all treatment and let her go.

    I asked mom to consider getting platelets at least to get her up a little bit so she’ll stop bleeding. She refuses to do it because Dr.Kou has started giving her treatments (she has two different ones) for her platelets. I don’t think she understands that those are not going to work fast enough for her to not bleed out. I can’t get her to listen! I see nothing wrong with getting platelets while she’s waiting for the herbs to start working. To me that seems prudent. But she will have none of it and there’s nothing I can do about it.

    I am struggling right now with her using some conventional medicine (ie. plateles) vs. all natural. I wonder why she can’t do both? It’s not chemo.

    Just had to express my frustration. Marla, looking so forward to talking with you about this to get some sense of if she should get platelets.

    Patti

31. Administrator said,

    August 13, 2006 at 7:30 pm

    Hi Patti, I’m back, so if you want to talk, I’m available. Basically, if you don’t already have matched platelets, then getting a platelet transfusion is sort of hit and miss–you could or could not get a boost. And you could or could not get an adverse reaction like chills and hives. Before I had found my compatible platelets donors, all the “random” platelets I got gave me lots of grief–i.e. massive hives to the point my face looked like someone else’s, and chills that were teeth shattering without a platelet boost, sigh. But, if you have compatible platelets, the result is “lovely,” all the petechia and blood blisters in the mouth go away almost instantaneously. I could see them vanishing as I got the transfusions and would go home with them gone. Amazing stuff, really. Course, if she’s continuing to bleed, then she may have to chance that she gets a good batch of platelets just to help her get over this hump.

    Regarding platelets only working for a short time, that may be true in some instances, but not in all. The regular donors I got worked well for me throughout my dependency on them which was 17 months for platelets, 19 months for red cells. At 17 months, I was still using my same donors and “still” getting good boosts. However, I did develop a sensitivity to about 3 of them, which meant that I would start to get hives, but still able to get a boost in platelets. So, later I started to use only a certain of the directed donors unless I didn’t have the others available. Basically, try to minimize negative reactions.

    But for practicality sake, at this point, are your MIL’s bruises looking like they are healing? Not getting darker or bigger? If the bleeding has already stopped, then she may do just fine to forego the platelet transfusion. However, if she is continuing to bleed in there, then I don’t see the harm in getting a platelet transfusion to “try” to help it stop. As I mentioned above, getting platelet transfusion doesn’t guarantee that it will stop the bleeding cuz you won’t know until after the transfusion if her body is accepting the platelets well.

    Andrea, I like your comment about tragedy being “lack of love,” and that death is not the ultimate tragedy. That was something I had to learn, also. This illness has helped me to define my beliefs more, and I found that staying alive “at all costs” was not my goal. Living life according to my conscience was more important. It was a revelation.

    Take care!

    Marla

32. Patti said,

    August 14, 2006 at 1:04 am

    Hi Marla,

    At this point, the platelets wouldn’t be for any bruising that she’s getting beyond what she got last week (and mom has no petichiae). Because she’s at 6000, the platelets would only be to try and prevent a brain bleed or something else that would result in death. I guess thinking that if we could keep her platelets up long enough for the herbs to work then she might still stand a chance. Otherwise, what chance does she have? She will bleed out before these herbs have a chance to work. Dr. Kou just started her on the platelet herbs a few weeks ago. But mom’s thing is she doesn’t need the platelets because she’s just “sure” the herbs are going to kick in and she’ll be fine. I guess I feel like she’s putting her head in the sand. And maybe platelets would buy us time, maybe it wouldn’t. Maybe the question I need to ask is if it’s worth it? But mom’s whole life is spent with the desire to be here for her daughter’s care. Well, if that’s what she wants then it seems to me that she’d better start getting platelets in the hopes it will buy her time. Otherwise, she’s going to bleed to death. Her platelets are dropping in large quantities each time. The last hit was 2000. When you’re at 150K, a drop like that doesn’t seem like much. But when you don’t have that many to lose, it’s a lot!

    Mom’s goal is to “stay alive at all costs” for Marie. If that’s her goal, then I don’t think she’s making a wise decision on this. I guess I feel like she’s making decisions that are contradictory to her goal. Does that make sense? It is a struggle for me to know how much I should push her. Kind of like the whole thing with the picc vs. the port. Where do I draw my line? And, will the platelets really do anything? We don’t know, like you said. And I doubt we would be able to get regular doners like you did. We could get both her sons and a couple of grandkids, that’s it. Don’t know if that would be enough.

    I’ll keep posting on what goes on this week. I’m sure it will be as busy as the past few.

    Oh – before I forget. She told me that after she got her last blood transfusion that hers arms (where they are bruised so badly) started hurting really bad. Especially at night when she tries to lie on them but also during the day if she moves them too much. I thought it was weird that when she was low on blood they didn’t hurt and when she got 3 pints the pain kicked in.

    Patti

33. Administrator said,

    August 14, 2006 at 2:46 am

    Hi Patti:

    Okay, I see where you’re coming from, and it sounds like a good plan. What I was told is that people don’t die of no platelets. The kind of bleed low platelets allow are generally slow, and you’ll usually have enough time to get to the hospital for platelets. Just because you have no platelets doesn’t mean that you will automatically start to bleed out. Basically, if you do start to bleed, “then” you need some platelets, but we’re not always bleeding. Having no platelets doesn’t mean that you’ll definitely develop a brain bleed. And if you have a bad reaction to platelet transfusions, then that could cause bleeding because with hives and swelling, things could stretch out to where you do develop a bleed. So being that your MIL is an adult, I think she should be given the benefit of the doubt that she is making good decisions for herself. Discussion and giving her information is good, but in the end, she needs to be comfortable with her decision. I also dropped to 1K and 2K platelets and fortunately never developed a brain bleed or any other serious internal bleed. But there are others who do with higher plt levels. And if she developed a major brain bleed, then it wouldn’t matter how high her platelets are, normal people die of aneurisms. Low platelets don’t cause aneurisms, although may allow a “slow” bleed. She needs to be extremely careful about hurting herself and causing a bleed, and yeah, if she gets below 5K, then she really should consider trying a transfusion. Has she had any history of brain bleeds? Or any other bleeds?

    Regarding the pain in her arm, you might want to check to make sure she isn’t having a temperature. Infection is a big problem with PICCs, and infection can cause lots and lots of pain regardless of hgb level. It could be just a bit of inflamation due to the insertion, but I don’t think the pain in her arm is associated with her hgb level. Headaches and cramps maybe, but not pain from a PICC line, I don’t think.

    Yes, keep us updated when you can, and take good care of yourself. You’ve got little ‘uns who need you!

    Marla

34. GL said,

    August 14, 2006 at 6:48 am

    Patti, hi,

    I assune you know this, but wanted to mention that “blood thinning” vitamins & suppelements, such as Vit C or flaxseed oil, could make bleeding worse. Also, are there any coagulation supplements (other than Vit K) that your mother in law is taking? Did you ask her naturopath if it makes sense to increase her current dose of Vit K or to add any other suppelments that could help with coagulation?

    Good luck.

    Lots of love,
    G

35. Patti said,

    August 15, 2006 at 1:08 am

    Well, I just had this all written and somehow it went into oblivian. Ugh. Marla, what you’re saying about platelets makes sense. Man, they scare us so bad at the doctor’s office. Like she’s going to die bleeding right there on the floor if mom doesn’t get platelets. She probably has more sense then I do with this then.

    The pain she’s having in her arms is both arms. It’s where she is bruised from her shoulders to her elbows from them working on her. I just thought it was really weird that the bruising didn’t start hurting until 7 days later after the procedure and then only after she got blood. Weird. The picc looks good. I checked it today. If it were just the one arm I’d be worried but it’s both so I know it’s the bruising.

    She’s not currently on anything that should cause bleeding issues. However, if she starts the exjade then she’ll have to be on vit. C. I wonder if that will cause issues. I guess we’ll wait and see. I will check with the naturapath about increasing the K and see if she thinks it’s okay. Mom’s on such a high dose of that already that I want to be careful. Too much of a good thing can be a bad thing. Know what I mean?

    Okay, today we took everyone (our family and mom and Marie) to the coast for the day. We always take the motorhome so mom can sleep when she wants to. Well, we no sooner got there then we got stuck in the sand. That is a first for us. We take the motorhome down there frequently. Oh, my poor hubby. He tried digging us out with a shovel. Thankfully, two guys in two different 4wd rigs came by and pulled us out but not without some interior damage to the motorhome from a flying oil heater! We finally parked somewhere else on damper sand and all of a sudden the tide started coming in. It never comes it at 2:00! It always comes in at 4:00. We were about 5ft from the water as we booked it out of the there. So much for our trip to the beach. We tried to go elsewhere to just walk around but it’s not to MH friendly and hard to find places to park. We decided to head home and go to a restaurant half way home. It was closed. By the time we finally got to a restuarant near home mom was totally wiped out (she never did get her nap) and she had to eat something before she could even walk into the restaurant. Now I was mad because I brought food for everyone and she never bothered to tell us she needed something. Oy, what a day. Time for bed.

    Later.

36. Administrator said,

    August 16, 2006 at 1:31 pm

    Hi Patti:

    Yeah, I know what you mean about them scaring you half to death about platelets and all. I remember that, too, being told that I couldn’t go home because I might develop a brain bleed at any moment. So naturally I was frozen like a deer staring into headlights. Ha ha! But when I started going in for regular platelets, that’s when the transfusion people explained to me that you don’t die of no platelets. And that it’s a false idea that you could bleed to death with a small cut. I also read that regarding hemophiliacs, too. Sure it’ll take a longer than normal time to stop bleeding, but you likely won’t die from a small cut. And especially if you take some precautions like applying pressure on the cut to stop the bleeding. Ya know?

    But having said that, if your MIL wants to hang out very low, then it would be good for her to know the signs and symptoms of brain bleeds or any internal bleeding. Note any unusual feelings or sensations or clearness of thinking. Take good care not to fall, which seems common sense enough, but when the hgb gets low, you may become unexpectedly unstable upon rising. Basically know yourself and pay attention. Slow down.

    Just curious as to why you’ve chosen Exjade over Desferal? I suppose Exjade is easier to take, but I have heard some reports that Exjade could lower the white count. You might want to ask your doctor about that. I heard it from two sources, Marlene who’s husband was being treated at John’s Hopkins, and another friend from Britain who was being treated at Liverpool.

    Glad to hear that you had some time to take the family out! A bit of trouble, but, hey! I’m sure there were some enjoyable moments? We took a few days off last week, too, with my family. My father has been battling multiple myeloma for about 3 years now, and we’re hoping more fun family time will help improve his health, or at least make life more enjoyable for him. I definitely had a great time. And my dad called me yesterday, and said that he really had fun and wants to know when we’re going again. Ha ha! I loved to hear that! Will have to think where the next trip will be.

    Take care!

    Marla

37. Patti said,

    August 17, 2006 at 12:21 am

    Hi Marla,

    I opted for the exjade for two reasons. Everything I’ve read of the desferal is that the side effects are nasty nasty. Also, mom would not do well being hooked up to a pump 8hrs at night. She just wouldn’t. It would be very very upsetting to her daughter (she’s retarded – about a 6yr old) to see that also. So I guess between the nasty side effects and the pump thing it just seemed like the exjade was the better choice. That said, I do remember a number of people saying that it lowered their white count so bad they had to stop taking it. Ouch. I’m going to have to ask about that because with only 100 ANC’s she can’t afford to lose any white cells. Second, I honestly do not believe mom’s going to make it long enough to use the exjade. I know that sounds a little pessimistic but if you could see things as I do, you’d understand.

    Today I had to go flush her picc line and change the dressing. A nurse was required to come and “observe” my sterile dressing change. It was like having an anal exam – good grief. I really doubt she’s going to go back and tell the insurance company I’m competent enough to do it but that’s another topic. While there, I noticed that the skin all around her eyes and a small amount between her eye and nose is absolutely orange. I mean, orange! I tried to show her but she couldn’t see it in the mirror with her glasses on and she can’t see a thing without her glasses! I know you are right about her liver and I can’t get anyone to listen to me! Her liver tests all came out “normal” but I don’t believe them. The naturapath has her on some homeopathic liver stuff but that’s it. She’s juicing beets daily which I know is supposed to be good for the liver. I don’t know what else to do. She’s not feeling very well either. She’s a week out of her last transfusion and tonight she told my husband she just isn’t feeling all that great. When mom says that it means, “I feel really really bad – lousy.” Because she doesn’t say things like that until she’s half dead. She believes that even saying she doesn’t feel good is giving into this disease.

    As for the beach – we actually did have an okay time. My MIL and SIL are just hard to convince that it’s part of the adventure and my kids followed their lead. Once before we blew a tire (I mean majorly) while we were driving the MH and we had a whole adventure made up with the kids and they had a blast. But when even one person says something negative (especially an adult) then little kids will follow them and it was hard for me to keep that “adventure” attitude going with them with the other two being so lousy about it. Make sense?

    My 8yr old and I had an incredible talk last night. That little girl is so spiritually minded, it’s amazing. She got saved when she was 5 and has really grown in the Lord. She asked all kinds of questions about God’s timing in taking mom home, how hard it is for her to let me go when I have to leave, about God’s “crystal ball,” what will happen when Marie comes to live here, and the one that got me most, telling me she and Aunt Marie had had several long, hard discussions about the fact that God doesn’t always choose to heal. Oh, that must have been good. They go to very charasmatic churches and mom just absolutely believes God always heals. Of course, she can’t answer my question about all the dead christians. I won’t even go further because it just makes me mad. I’m going to have some serious pieces to pick up with Marie when this is all over. Oh well. I think I’m ready for it now. More then I was two years ago.

    For now, it’s one day at a time. That’s what I keep telling Grace (my daughter).

    Patti

38. GL said,

    August 17, 2006 at 4:39 am

    Patti, please hang in there,

    I recall that a few months ago you had a scare, your MIL’s platelets were dropping, you thought she was bleeding internally and the doctor and naturapath decided that your MIL’s marrow just no longer produces anything. And after that with Dr Kou’s help things started to stabilise and improve. Maybe this is another bump in the road? I very much hope that things will imrprove.

    Regarding orange – does your MIL juice carrots? I know that sometimes from too much carrot skin could look orange. And maybe the thinnest skin around the eyes will show it first? Just guessing..

    If I understood you correctly, you mentioned in one of your posts that your MIL is no longer taking as many vitamins-supplements as before. Could things getting worse be connected with her bone marrow not being as well nourished as before? Would not she need more supplements now?

    I apologise for saying this – I am sure that your naturopath knows what’s right, I was just curious.

    Strength to you, Patti,
    Lots of love,
    G

39. Andrea said,

    August 17, 2006 at 5:47 pm

    Hi Patti–Thought I’d put in my 2 cents about the liver issue. Dandelion root tea (available in health food stores and quite tasty if you like bitter things) and leafy greens, including dandelion greens are really good for the liver. Ditto deep breathing, seems too simple to be effective but it’s always good for you.

    I certainly feel the dilemma you’re in, with belief systems knocking against reality. I wouldn’t want to be in your position. Your daughter sounds remarkable.

    IMO, God does always heal. But our small human ideas of healing are not the same as His. “My ways are not your ways.” Healing is not necessarily living longer. Healing is going Home at exactly the right time, when you’ve completed what you were born for. After all, Jesus didnt live to be very old.

    Just my .02 on livers, and on God!! Best, Andrea

40. Administrator said,

    August 17, 2006 at 9:38 pm

    Hi Guys:

    G: I’m not speaking for Patti or anything, but I think that it’s nice that you are sharing what you know and trying to help in any way you can. I don’t think there is any need to apologize for that! The one thing I noticed nice about Patti is that she listens and tries to sort out all the info she is given and then goes out and seeks some more! I think that’s Biblical. Seek and ye shall find. It doesn’t say, “sit back and wait until everything come to you!” LOL Probably not a good idea to just stop at one naturopath and stop seeking. Especially if you still need help! Doesn’t mean you can’t reject some things that don’t make sense to you, but at least you’ve had a chance to consider it.

    Patti: It sure seems like your MIL is making some fast changes. I’m hoping that her platelet transfusion went well and that the platelets were effective. Let us know when you get a breath how it went. I’m with the frame of mind that if there is life there is hope, but at the same time, I know the yo-yo effect on your emotions can be horrible, so good that you and your family are preparing yourselves for any possibility. You just have to.

    Regarding children and how they deal with sickness, after I read your post, I realised that my youngest son was 5 when I was first diagnosed. He is now 12. And not long ago he mentioned that he doesn’t really remember much before age 5. So that got me thinking. . . So all you remember of me is that I have been sick? Struggling to recover? His answer? Yes. I also recall when I first got sick, and I was told that the other kids at his school were commenting to him about me possibly dying. His answer? “Well, she can’t live forever.” That was from a 5-year-old. I know that it came from a heart-to-heart discussion my husband had with the boys after we were informed of the severity of my condition. But he remembered it well enough to answer the other kids at school. And honestly, sad as it was for me to hear, I felt some comfort knowing that I think he can deal with the eventuality of me passing. I later found out it was my middle son that was affected the hardest. And I thank God that I survived this long because I think my middle son really needed me to be here longer. It’s surprising how different my 3 boys seem to be even while growing up in the same family. Many similarities, but their own personality. You know?

    Andrea: Regarding God and healing, wow, that can be a touchy subject! I’ll start another thread for that topic in case you all want to just banter ideas or just vent. I think it’s a good topic, really, and worth exploring. I personally don’t think I get too offended when our heads clash on the subject, but I know it can get offensive to others. But as a warning, I do have some of my own ideas, which may sound offensive when not intended to be. Perhaps not everyone will agree with my interpretation of the Bible. And if I am wrong, I would like to know why. I think seeking truth is extremely important more so that just trying to prove that we’re right. So with that, I’ll open up the topic and see how it goes! As long as we can keep it civil, I’ll let it ride. I’m sure many of us who have had to endure such a devasting illness have questioned God’s intentions or our own purpose in life. Some I’ve read even question His existence in times of great need. But I have to admit, I’ve read such faithfulness in some websites in the face of their turmoil, that I have been humbled many times. So, I guess I’ll call the new category, “God,” and if there are other topics that involve Him, I’ll branch off into sub-categories.

    Take care!

    Marla

41. Patti said,

    August 18, 2006 at 1:12 am

    August 17, 2006

    After not sleeping much last night out of concern for mom I went over there this morning to check on her. She showed me two huge blood blisters in her mouth. One on her tongue, the other on her cheek. With Binny Hinn blaring in the background (I’ll save that for Marla’s God topic), I quietly bowed my head and asked God for wisdom. It’s hard to hear God with all that noise!! I was looking for His still, small, quiet voice. Anyway, mom decided we’d probably better check her platelets. She explained that she’s just excessively tired and doesn’t know why considering she had a transfusion last week and she normally feels quite well until two or three days before another one. Her CBC showed okay hemg. and hemat., platelets – 3000. Eeeks. On the off side, she had white cells! Lots of them. So much for Dr. Reynolds take that the neupogen shots work right away. The picc doctor knew more than Reynolds did! The daily shots that she did two weeks ago kicked in this week. That’s probably a good thing and is probably preventing some infection right now so we’ll just take what we can get with white cells. We did decide that mom will stay on the neupogen because obviously it’s working. What’s more likely is that she’ll go from two shots a week to three shots a week. Bonnie, the NP, felt like that was reasonable. She doesn’t always agree with Reynolds and she knows mom the best since she’s been treating mom for 2yrs so we go to her as often as we can. Oh, and yes, mom’s are eyes are definately orange the NP said. Gloria, your idea is actually a good one, but mom doesn’t juice carrots. It was pretty much determined that the orangeness is from the iron overload on her liver. Ugh.

    Back to platelets. It was 3:00pm by the time Bonnie made the decision that mom needed platelets. The outpatient infusion clinic couldn’t get us in today so as we were trying to schedule for tomorrow. Bonnie came back and told us she wanted mom to the hospital instead. She was not comfortable waiting one more night after seeing how bad her mouth was. She said with mom’s extra fatigue she was concerned she was bleeding in the gut – even if it was mild and not showing up in her stool. So off to 5K we went. Have I ever mentioned how much we hate 5K? The nurses are awful and the place just smells like death. Mom and I promised each other never to go back there. We got there at 4:00. Platelets hadn’t even been ordered yet. By 4:20 they were ordered but it was going to take two hours. So we went to have dinner. Mom couldn’t eat. Oh, she’d lost 4lbs since last tuesday. That was concerning. Her mouth hurt so badly. But she took 3 bites and saved the rest for later. At 6:30 we finally got platelets. It was a HUGE bag. I don’t ever remember seeing that size at the outpatient clinic. It was 343cc’s of platelets. I was just so surprised and she said it would take 1 – 1 1/2hrs. Boy were mom and I shocked. Things went well though and she cranked it up so we were done in an hour. Mom had a mild allergic reaction on the way out of the building. She had some hives on her body, but not as bad as one time when she reacted to a blood transfusion. I gave her another benadryl (apparently they’d only given her 25mg when they were supposed to give her 50mg) and she started getting better right away. I tucked her in for the night and came home. It was 9:00pm. I left at 1:00pm. She said she felt like she was feeling a little better fatigue wise on the way home. I wonder if Bonnie was right and she was leaking in her gut and it was making her tired? One of the sores in her mouth really changed a lot with the platelets. The worse one changed a little, but it was getting better. We could see by 6:00pm before they started the platelets that the one sore on her tongue had already grown a larger “bruise” area and that if we’d left it until morning that blister would have been much bigger than a quarter. Mom was very glad we made the decision to go in today. It was the right thing to do.

    Bonnie wants mom to see the hemo on Monday for a CBC to check her platelets and her tongue and to determine what we want to do from here. She basically said we need to decide if we want to maintain mom with weekly platelet transfusions, neupogen shots 3x’s a week and blood transfusions every 3 weeks. What does one say????? Mom doesn’t want to go to the appt. and I honestly don’t know what to tell her. How does one make that awful decision regarding treatment?

    This is where things get spiritual. I’ll save most of it for the new thread but Andrea, I have to agree with you. We’ve been telling my SIL that if God doesn’t heal mom on earth, she will be healed in heaven. Marie ain’t buying that no how. I had to use that language because that’s what I think of when I think of Marie. Some people may not understand what I’m about to say, but I know God does. When mom was diagnosed two years ago God made very clear to me that He was not going to heal her on earth. The Lord won’t even let me pray for healing for her. When I have tried to in the past I’ve gotten chastised by God for not trusting his plan. Okay, so I stopped. So, knowing what God has shown me, how does that play with the natural stuff? On the one hand, it is legitimate to continue medical intervention in order to give the natural stuff time to work. And realistically, it has worked. Mom’s RBC transfusions have been lengthened, she’s had zero infections in two years (which is pretty amazing). So, do we give medical support to see if the natural will kick in with platelets, etc? It took 4 months for a change to take place with her red cells. Dr. Kou just started working on her platelets two weeks ago out of concern that they were just getting too low. Do we give it time? Or are we prolonging the inevitable? And how does one take that hope away from mom? I think we can’t. It’s not fair too. What God has shown me, he has not shown her. If God wanted mom to know, he would have told her that. See the dilemma?

    Gloria, your question regarding supplements is a good one. As a matter of fact, on the way to the doctor today mom and I talked about that and one of the supplements we talked about was essiac tea. She seemed to do real well on it and the naturapath felt like there wasn’t enough “scientific” evidence to warrant continue taking it. I think it was a major mistake on our part. There are a few other supplements I am feeling the same way about. As much as I like this naturapath, she is still a “doctor” in some ways in that if she can’t find major research on something, she really doesn’t give it much merit. To me, that’s kind of like an MD. So in a lot of words, I think you’re right, Gloria. I’m just not sure if we can redeem what we’ve lost. It’s something mom and I need to talk about. I am learning not to trust any one doctor too much these days.

    Marla, the story about your sons is interesting. It seems like my being gone so much has affected my oldest and youngest the most. They’re both girls and my son has his daddy home 24/7 so I wonder if that’s why he’s doing okay? My 5yr old has started wetting her pants like 3x’s a day. It especially seems to happen when I’m gone. While I was on the way home from the hospital tonight she started throwing up. She has NEVER been sick in 5yrs. Not even an ear infection (my other two had tons of them). She has her grandma’s constitution! I think it’s stress because the other two kids are fine. Ron think’s it’s just the flu. I guess we’ll find out. My oldest daughter just likes to be able to talk about it with me, which is fine. Sometimes she cries because she misses all the cuddle time, but if I can take the time to talk to her after I’ve been gone a long day she does okay. She told me today that her and Aunt Marie had it out again today about grandma being healed. Ron also tried to talk to Marie today about mom getting sicker and she just couldn’t/wouldn’t comprehend what he was saying. It’s not that she can’t, it’s that she won’t.

    Well, folks, it’s been a long day. Marla, I want to thank you again for all of your help. I don’t know what I would have done without it.

    Blessings and until later….

    Patti

42. GL said,

    August 18, 2006 at 12:31 pm

    Dear Patti,

    Have you considered a possibility that the increase in WBCs and the decrease in PLTs are a sign that the disease might be progressing?

    Is Vidaza/Dacogen at all a possibility at this point? I know that older patient’s than your MIL do it, but their blood might not be at the same levels as your MIL’s.

    I wish I had the answer or a solution…

    Lots of love,
    Gohar (sorry, not Gloria)

43. Patti said,

    August 18, 2006 at 12:50 pm

    Gohar!

    I have been thinking so much about you! I wondered where you went. I’m glad you told me it was you because there is also a gal named Gloria that’s also been writing to me. I can’t keep you G’s straight without a full name!

    The short answer to your questions is yes. On the platelet side of things, it’s obvious that her disease is progressing. And since Dr.Kou didn’t start treating her platelets until a few weeks ago we have no way of knowing what’s going to happen with them. For now, we either have to choose to support her with platelets or let her go. Actually, it’s her decision, not ours. As for the white cells – that is questionable but definately something I considered yesterday. The problem is, two weeks ago she had almost no white cells. She gave herself daily shots of neupogen in preparation for having a port put in. Two weeks later, the neupogen started working. She normally only takes two shots a week but she took five days worth so it’s hard to know if she’s progressed to AML or if this is just the left over from the neupogen. We decided that that question would be answered in two weeks after this round of shots has worn off and she’s had two weeks of only doing two shots a week. I’m not too concerned about the white cell increase because she has done this before and it’s always just been an anomoly. So we’ll see. But for sure, her disease has progressed. I think that anything we do right now is simply prolonging the inevitable. But again, that is a decision she has to make and in light of her desire to be around for Marie, I don’t see her not doing anything. I expect she’ll start weekly platelet transfusions for at least awhile.

    Gohar, how are you doing? How’s your mom? I’ve been thinking much about you. Take care.

    Patti

44. Patti said,

    August 18, 2006 at 11:41 pm

    August 18, 2006

    Mom is feeling so much better today! She looks better, she sounds better. The sores in her mouth are healed enough that she can eat again. I am wondering if her extreme fatigue was a bleeding/leaking gut and now that she has platelets to stop the bleeding she’s feeling better? Just my layman’s guess. For now, I’m glad she’s feeling better. I pray that next week is not like this last week. My husband and I are absolultely exhausted.

    patti

45. Patti said,

    August 20, 2006 at 10:26 pm

    August 20, 2006

    Mom has an appt. with the hemo. tomorrow and we have come up with what we believe is a good game plan for now. Mom will go every tuesday morning for a CBC to check her platelets. If symptoms warrant and her platelets are low she will transfuse platelets that afternoon. Between those appts. she will see Dr. Kou. Mom has decided to try using desferal first for chelation rather then the exjade. After some good advice from Marla, mom’s decided she doesn’t want to be a guinea pig for big pharma. So, she’ll give it a try. For now she’ll stay on two neupogen shots a week and only go to three if she ends up taking exjade as we know that can lower white cells. My goal is to keep everything on one day a week as I will be starting school with my kids on the 28th. So this is our big plan. I know from experience that whenever I’ve got some great plan in dealing with mom that a wrench gets thrown in it. So, we will wait and see what tomorrow brings.

    Until then…..

    Patti

46. Andrea said,

    August 21, 2006 at 2:56 pm

    From God’s will for us, to blood counts and Exjade. . . . I love how this discussion is all over the map.

    Patti, I have a brother with Asperger’s syndrome. He is of normal intelligence but very immature emotionally. He was terrified when Rob was sick, ’bout had a cow every time I called (”IS ROB OK?”), and is very very frightened of losing our mother, who is in great health but is 89.

    Thinking about how I would feel if someone told him that “God always heals” meant that Rob would definitely not die of AA, or that he will not lose his mother, I can certainly feel your anger and frustration at the information Marie has been given.

    You will be left holding Marie’s emotions when she loses her mother, which will probably include loss of faith, which is so so painful!!

    Whoops, we’re getting into God stuff again! I hear you Marla that this is sensitive stuff. I certainly don’t want to offend or trouble anyone. But I was so struck by Patti’s difficult position.

    Best, Andrea

47. Patti said,

    August 22, 2006 at 6:36 am

    Hi Andrea,

    This thing reads like a bad soap opera doesn’t it? It was supposed to just be a chronicle of health stuff but I’ve discovered that all parts of our lives are affected by illness so it’s hard to leave the other stuff out.

    I can tell you know EXACTLY where I’m coming from with my SIL. It’s very sad and you said right what I’ve been thinking all along. It’s the loss of faith that so hurts in the end. But, God is gracious and I have no doubt he will give us the ability to reteach/train and encourage a new faith building. It will just be hard and long. But who in life said it would be easy?

    As for mom’s appt. yesterday: a quick update

    I guess we’re not going for weekly CBC’s regarding platelets (hallelujah!). The doc just told mom to watch and do what she’s been doing and just go in when she needs to. Mom has decided on the exjade now. I don’t think it helped that the doctor told her desferal was so toxic she wouldn’t be able to handle it! Oh, and the description of skin sores, etc. that she would get helped changed her mind. Geez. This guy is a real winner. Why can’t we find a decent doctor?!! This is number 3 and I had no intention of trying to find another one. Although, I might still consider it after this loon yesterday. He told mom her disease is progressing and he expects her to get pneumonia for which he’ll not be able to treat and that will be the “end of her.” I am not kidding you in a million years. Can you believe that?!

    Anyways, her counts looked really good for being at the two week mark of a transfusion. I think things are settling down finally since that picc procedure.

    Gotta run.

    Patti

48. Andrea said,

    August 23, 2006 at 1:45 pm

    Patti–

    I can only shake my head at the story of this last doctor. That is completely outrageous. Considering that the placebo effect is a measurable effect, this doctor just delivered your mil a dose of very harmful medicine. What was her reaction?

    Sadly, I have had doctors say similarly outrageous things to me. Makes me grateful for the docs we have, flawed though they may be. I can’t imagine either of them behaving in such a manner.

    Yes, faith can be rebuilt. And the new, rebuilt faith is always better. But hard won. And, like you said, no where does God tell us it will be easy, that we will not suffer. He just promises to stand by us.

    Great to hear about her settled counts. Hope you have some peace for awhile now.

    Soap opera, indeed. Hey, you think if we put together a script we could make some money on this? People would say when they watched it, Oh, right, like a real doctor would really say that . . . .

    Keep the faith, Andrea

49. Marlene said,

    August 23, 2006 at 1:58 pm

    Thought I’d bettter address our Exjade experience. John started on only 500 MG of Exjade on June 25. His white count is fine. In fact it’s up to an all time high of 2.7 today!!!!! As were his platelets (27K) and HGB (10)! So, 500 mg is well below a normal dose but his doc is conservative and we are taking it slowly. He’s doing much better with the Exjade than he did with the desferral.

    At first, John was getting checked every two weeks to watch for any changes in his counts and a chem panel done. They are all doing pretty good. So at the end of September, his doc may up his dose by 150 – 250 mg. I don’t think he will every get to a normal dose for his weight and I don’t think it’s needed since he’s no longer transfusion dependent. All the studies were done on people stil getting red cells which means you are trying to get ahead of the curve which requires a higher level of the drug to pull out more iron. His only side effect is some nausea and possible fatigue. John will never go back on the desferral. (i know, never say never) He felt worse on it and had so many issues with bruising from the infusion that he would have to stop the therapy for weeks until the bruises cleared up. So he’s much more compliant with the Exjade.

    So I wouldn’t be afraid to try the Exjade, just start slow and work up to the right dose, with weekly CBCs for the first two to threee months. Many side effects are dose related.

    Marlene

50. Patti said,

    August 23, 2006 at 10:06 pm

    Andrea, you make me laugh. Somehow I don’t think my soap opera would be “steamy” enough for anyone to spend money on! Hmm, I guess that’s a good thing!

    Marlene, thank you, thank you, for your exjade experience. It will be interesting to see what happens with mom and it. If she gets nauseas I can almost guarantee she’ll stop taking it. Her big thing is, if she’s going to have this darn disease she’s at least going to feel good with it. Which isn’t a bad philosopy, but I’m not sure it works all the time.

    As a side note – we think we figured out what happened with mom’s platelets taking a dump. Now granted, they did drop from 8K to 6K a short while ago but she’d been holding at 6K. We figure, there are only “X” number of stem cells in the marrow. She took those five days of neupogen shots and two weeks later she had tons of white cells and guess what? 3000K platelets. Not enough stem cells to differentiate to platelets. That’s our theory. It’ll hold up if she has 6K platelets again the next time she has a CBC (tuesday). So it may be that the whole platelet thing was self-induced because of the extra neupogen shots. Which will make us hesitant to take a 3rd neupogen shot a week while she’s on the exjade because then her platelets would probably drop again. Around and around we go and where we stop, only God knows…. but at least we somewhat understand what happened last week.

    patti

51. Marlene said,

    August 24, 2006 at 7:52 am

    Hi Pattie,

    I too agree that the neupogen effected her platelets. When John was on it they wanted him offer sooner than later for that reason. As long as he could maintain an ANC at .5 – .8 range on his own, they wanted him off it because then you body can decide naturally what to do with those stem cells.

    Marlene

52. Administrator said,

    August 24, 2006 at 7:56 am

    Hi guys!

    Patti: Good to hear that your MIL seems to be getting under control health-wise. Amazing what some platelets and red blood can do for you, huh? LOL When I was dealing with my AA, I read the Bible from cover to cover for the first time in my life. And one of the things that struck me was the references to blood in the Bible. Seeing how important blood is to our existence helped to give the references to blood in the Bible more meaning to me. The theme of blood in the Bible runs deep, and knowing my existence hinged on the quality and quantity of my blood brought some of those Biblical concepts closer to my heart. And simple references in the Bible to life being in the blood meant more to me. Anyway, that’s another off-topic theme! Ha ha!

    Marlene, thanks for updating us on John and his usage of Exjade. I think that’s a good idea that he started off with a smaller dosage and then work up to a higher level. That way you can test it out on him. Good to know these things, so your imput is very much appreciated. What was his ferritin before starting on Exjade? Would be interesting to know if his ferritin reduces at the same rate. Patti found that Exjade was processed primarily in the liver while Desferal went primarily through the kidneys. That’s a good thing to know, and I wonder if that will help any of the edema problems John has had on occasion. Let us know if you notice anything along those lines, too, if you would. Hope all is well with you, too!

    Andrea: Soap opera? ha! What an idea. A satirical comedy might be a possibility too, if like what Patti said said their isn’t enough steamy stuff to keep it rolling. LOL

    Take care,

    Marla

53. Andrea said,

    August 24, 2006 at 12:47 pm

    Yeah, I’m picturing something where there’s a print-outy thing on the bottom of the screen, keeping track of the blood counts of each major character.
    That would be for the soap. After all, don’t we all focus on those numbers like they were part of a steamy novel? I know I do.

    But you’re right, for the general non-AA public we’d probably have to come up with an honest-to-goodness hot scene or two. Blood counts just wouldn’t do it.

    As to the Bible piece–yeah that hymn “There’s Power in the Blood” takes on a whole new meaning for sure. And I’m so intrigued now by expressions like “let’s bring in some new blood” or “there’s bad blood in that family” or “blood is thicker than water” or “it gets into your blood.” Really, when you start listening, people talk about blood symbolically all the time.

    Rob’s platelets are holding in the teens so we’re off to sail for a week! Seeya later! Andrea

54. Patti said,

    August 26, 2006 at 2:43 am

    Marla,

    I wanted to have a very frank discussion about medicine and I’m not sure where to put it so maybe you can take this and run with it and we can all chat about it. Not sure if you want to move it.

    If you were faced with let’s say, a cancer, would you (or should we, I, etc.) consider conventional chemo or are we better off to do a Gerson type treatment, etc.? I’ve been giving this a lot of thought regarding my own beliefs in light of mom’s illness and frequently wonder what I would do if I was told I had cancer, specifically. I use that one since that’s the most likely scenario for a person requiring chemo. Would it depend on the “cure” rate a certain cancer has with chemo? Would I do integrative medicine? What would I do? I’m curious if others have thought about this in light of the illnesses that we are all dealing with today.

    Patti

55. Administrator said,

    August 26, 2006 at 9:05 am

    Thanks Patti for your suggestion. I like it! And am curious to hear other people’s perspectives. I have just opened a new category for this discussion under “Treatment Decisions.” When I have a little more time, I will throw in my 2 cents.

    Have a great day!

    Marla

56. Patti said,

    August 29, 2006 at 9:05 pm

    August 29, 2006

    Today we saw the nurse practioner (Bonnie) and had a very good visit. Mom’s ready for a transfusion. HCT: 23, HGB 7.6 (this is holding good!), Whites: 1400, ANC’s: 700, Platelets: 5000. Boy, those 17K platelets were nice while they lasted last week. Bonnie did not want to transfuse platelets this week unless mom starts to show signs of bleeding. She has mild petichiae on her lower legs. To me that a good enough sign! Mom rarely if ever gets petichiae! But, I guess we’ll wait until her mouth sores get bad or the petichiae gets worse. We were unable to schedule a transfusion until Thursday so I’m just guessing by then we’ll be throwing in a unit of platelets. I guess I’m glad we can’t transfuse tomorrow because I can almost guarantee we’d be going back Thursday or Friday. It doesn’t make sense to me to be out 3 days this week!!! Anyways, God knows the timing thing so I’ll just trust that. We did talk to Bonnie about switching doctors and she’s going to verify that the gal we’d like to see will give us the irradiated blood and then we’ll switch. We actually had a good talk about the 3 doctors we’ve seen and their attitudes. The bottom line was Bonnie said sometimes after going to “God school” (medical school) they can get real heady and don’t do well when patients direct their own medical care. She also acknowledged that by mom directing her own care she’s still here two years later when most of their MDS patients are not. I guess that’s quite a compliment. It was a good visit with a lot of laughter and once again knowing that telling them what we will and won’t do is the way to go, not the other way around!

    As for other decisions we made – mom will start the Exjade at 250mg as Marlene suggested. We’re going to try and keep it at that rate. Without the insurance coverage this drug would be $3400 a month!! It’s $55 something a pill!! Yikes. Come January mom will have to fork out the $5100 but after that it won’t be bad. And until then it’s just $136 a month.

    We also saw Dr. Kou and talked to him about the chelation and last time mom saw him he started her on Mung Beans. Mom says they are very good. Today he said that the Mung Beans will not only help with platelets (Marla – give those a try for your platelets!) but it will help with chelating the iron out of her system. So mom and I think that’s a decent balance. Low dose Exjade with the Mung Beans for chelation.

    Dr. Kou is very concerned about mom’s platelets. He’s confident that her reds are improving because she’s holding a HGB of 7.6-7.7 for the most part (ignoring the whole picc disaster that lowered her counts). He changed her formula to a high powered formula that she’ll take less often but has more punch to it. He’s continuing to carefully deal with her platelets. No acupuncture today. Too risky. I did notice mom’s ankles were swollen. She says they weren’t but they were. That’s usually indicative of her heart struggling. Her BP was 130/50 today. That bottom number gets the nurses every time. Does that mean her heart is having a hard time pushing the blood out of it and into the rest of her body? I can’t remember.

    Guess that’s it for now. It was a good day but very exhausting from all of the driving. I went from our house to Lake Oswego to Gresham, to Portland and back to Scappoose. I logged over a 100 miles today! Oy, no wonder I’m tired.

    I was supposed to start school on Monday, but decided we would wait until Thursday so I didn’t skip two days right after starting. With transfusing now not happening until Thursday we’re going to try and start tomorrow anyway. I guess being the first week it won’t matter much. But it’s still frustrating. I can never get a full week home to be with the kids. But they are dying to start school so I may as well just jump in with what I can.

    Assuming she’ll take the transfusion fine but I’ll update as we go.

    Patti

57. Administrator said,

    August 29, 2006 at 11:02 pm

    Hi Patti:

    Thanks as usual for the update. Sounds like things are calming down again, so that’s good news. That PICC line week was a bit unnerving! Glad that’s over!

    Hey, I was just checking out the MDS Forum and noticed a post by Covergirl under the “Progress Report on Exjade” thread. Apparently, she experienced a drop in whites with the Exjade so switched to Desferal. You can read her post at http://www.mds-foundation.org/ubb/ultimatebb.php?ubb=get_topic;f=1;t=004333
    Just thought I’d give you the heads up in case you hadn’t read it. Keep a close eye on your MILs whites for now until you’re certain the Exjade isn’t negatively affecting her whites.

    Night!

    Marla

    P. S.  Thanks for the mung bean tip!  I’ll have to hunt some down!  Would write more, but I’m gonna try to hit the hay.  I’m actually starting to sleep pretty good to where I’m actually getting sleepy!  Ha ha!  So I’m not gonna fight it!  Toodles!  zzzzz. . . .

58. Patti said,

    August 30, 2006 at 9:54 pm

    Hi Marla,

    Thanks for the exjade link. I have been following it out of curiosity. Hey, before I write a whole long post, every time I write I’m getting kicked out of your spam filter. I posted twice on the treatment thing today and neither posted. Is it just that you have to approve them or do I actually have to retype the things over again? Can you let me know?

    Got some info on mom’s exjade today. The doctor prescribed her 1250mg. based on her height and weight. We said she would only take 250mg. for a month and then 500mg after that. That’s it. We’re hoping between that small amount and the mung beans from Dr.Kou that it will be enough to at least keep her iron from rising and maybe make a little headway on lowering it. The pharmacist I talked to about it was thrilled to hear we weren’t going to take the 1250. He said at mom’s age he would not recommend slamming someone’s body with that much exjade. He thought the 250mg was reasonable and that she should not experience any side effects from that at all. He said it’s almost guaranteed at the 1250mg. We are going to watch her white cells very closely as I know that’s an issue. Right now she’s getting by on 2 neupogen shots a week and we don’t want to up it anymore because of the stem cell differentiation issue. Bonnie told us that she also thinks that’s what happened with mom taking the 5 days of neupogen shots two weeks ago. Funny, Dr. Reynolds said it had “nothing” to do with her platelets dropping. Liar. I think Bonnie knows more then the doctors do. I guess I’m glad she didn’t go to God School (medical school).

    I heard today from Bonnie about switching to Dr. Kurup. The doc was all for taking on mom and has no issue with the natural stuff. Fortunately, being Indian she was raised with the natural therapies her whole life and is not threatened by them. She scheduled a 1/2hr appt. with mom in 3 weeks rather then 15 minutes because she wanted to actually know what we were doing that’s working so far. How amazing is that???? At the very least, I think we’ll get better treatment in terms of conversing and what our ideas are for different treatments. I did mention to Bonnie that mom is using the mung beans for chelation also and she about freaked. She was concerned it would interfere with the exjade. I told her not to worry, it’s a food. Shouldn’t cause any trouble. But I could tell she thought we were nuts! Oh well.

    Off to bed. Tomorrow mom has a transfusion and we’re just watching her platelets closely. She said, as of this morning, the petichaie hadn’t gotten any worse so that’s good.

    Hey, Marla, glad you’re sleeping better!!! Although, I have to admit, I’ll miss “talking” to you at 2:00am.

    Patti

59. Patti said,

    August 31, 2006 at 10:17 pm

    Okay, I’ve learned I don’t have to date this thing if the info is from the same day I’m writing about. Yeah, I know, I’m a little slow.

    Mom’s transfusion went fine today but around 1:30 her gums started bleeding and two new mouth sores popped up on her tongue and one on her lip. Uh, oh. Her last bag of blood was almost done and we started to talk platelets. I did what I always do in situations like this. First, I prayed for wisdom. Second, I assessed the situation by asking myself what changed in the last hour that could have caused the bleeding, what previous indicators were there, etc.? and Third, always call the husband. He is wise beyond his years and always has the right answer. Hubba said give her platelets. His feeling was that we just filled her with 2 units of blood and vessels were starting to pop because she actually had enough blood in her for that to happen. Also, why let it leak out through her gut again? And finally, we’d be back there either tomorrow or saturday and why do that because we’d end up at the hospital? So they ordered platelets stat and we had them in just over an hour. We didn’t get out of there until 5:30 though. Mom was pretty upset. Before we decided on platelets she laid her head back and said she didn’t want to be there until 5:00. She also said she wanted “this dumb disease to just go away.” I think it’s easy for me to get so wrapped up on my stress and family life that I forget she’s the patient and struggling as much or more then I am. By the time we got home at 6:30 her mouth sores were all healed and her gums had stopped bleeding. She told me that last night her gums bled for a long time. She used some of Dr.Kou’s emergency bleeding powder on her gums and it stopped it but not until she’d waited several hours first. I find it amazing that I can look at her and turn away and then turn back to her and she’ll have two or three new spots on her mouth busting open. I just can’t get over that. Oh, mom had no reaction to the platlets today so I’m thinking I want to find out who that donor was!

    Marla, one platelet question. We gotten two units of platelets now both due to expire the day they are using them. I know platelets don’t live long but the nurses keep telling us there’s nothing wrong with that. Are they right or wrong? I know expiration dates on the blood matter (thank God we got two good bags today!). What about platelets?

    I also had to go to the Asian food store for her today to get jujubees for her platelets and some mung beans. I discovered that jujubees is an oriental name for RED seedless dried dates. No sugar added, of course. They are supposed to be great for building platelets. So, Marla, there’s another one for ya. Man I learn something new everyday with this stuff. They almost look like a large dried cherry. Mom says they are pretty hard but tasty. She takes 6-10 a day. They don’t look anything like regular dried dates.

    So, long day but it went well. I’m ready for bed and hubby fell asleep on the couch at 9:00! He’s wore out from chasing the babes all day. He did talk to Marie today about mom’s illness/healing, etc. He didn’t get very far with that but was able to reassure her that she would never be alone and whatever happens we will have a place for her in our home. He said she seemed to take that well and understand it. He told me tonight that by the time we got home she was a total basket case because we were supposed to be home around 4:00. Even though we tell her when things change, she usually assumes that means something bad has happened and spends the rest of the time freaking out. Oh well.

    That’s it for now. More on another day.

    Patti

60. Administrator said,

    August 31, 2006 at 11:21 pm

    Hey Patti!

    Been out most of the day today visiting my parents, so haven’t been on the computer much. I didn’t see any of your posts stuck in my spam filter. Does it still look like you’re missing a post? I saw a couple from you on the treatment decisions category. Are those the two you were referring to?

    Sounds good that you’re starting out slow with the Exjade, that way you can see if she has any reaction to it. Then you can gradually work up if that dosage isn’t keeping her ferritin in check. Why did Dr. Kurup freak out about mung beans? Did she say anything specific as far as what’s wrong with mung beans?

    I still haven’t gotten a chance to find any organic mung beans, but I used to eat quite a bit of those jujuberries. I didn’t know those were supposed to be good for platelets! I used to eat the a lot about 3 years ago. There’s a vendor at the farmer’s market that has really good ones! I actually like them a lot, but I’ve been avoiding fruits and particularly dried fruits because of the sugar content. I’ll hunt down some mung beans first, and see how it goes. Thanks for the tips!

    Glad that your MIL’s transfusion went fairly well and you were still there when you realised that she needed platelets. Isn’t it amazing what platelets can do? Ha ha! I remember the first time I got those blood blisters in my mouth. I didn’t know what the heck they were! I knew nothing at the time and no one told me anything, either. I kept getting the urge to “pop” it and let the blood drain out. Luckily I never did that! Ha ha! And I still remember how fast those blood blisters faded away after my platelet transfusion.

    As far as freshness for the platelets, gee, platelets generally don’t last very long in the first place. They normally survive for only 10-12 days. Some say up to 14 days. I know that when my platelet donors donated, it took about 3 days for the platelets to be transfusion ready. So that would leave about 10 days for them to be viable. Since I knew when my platelet donors donated, I knew it was only about 3 days old. Do they happen to put any info on the date when the platelets were donated? I can’t imagine that they would have the expiration date on the 14th day. I’m guessing (maybe hoping) that the expiration date would be at the longest, a week after donation. Another thing, too, is that platelets don’t raise your MILs iron level. So that’s a plus. The red cells are the ones that increase her iron, so you want to make sure the red cells are fresh to help minimize the amt of red cell transfusions. Bottom line, the fresher the better, but I don’t think they have much lee way as far as expiration time with the platelets like they do with the red cells.

    It’s good the your hubby has some talks with Marie like he did. I’m sure that helps to comfort her that someone will be there for her. She probably has a feeling that your MIL is gonna have to go one day. For Marie’s sake, it’s probably a good thing that it hasn’t all happened so fast. It’s been 2 years already. She has time to see it coming and so you can help her prepare. As far as her worrying when you come in late. I don’t blame her. I tend to get like that, too! Ha ha! My imagination runs away from me, sigh.

    Yeah, I have been starting to sleep better! How about that? I think it might be due to the herbal extracts that I started to take. I do still wake up at night, but I’m a lot more groggier, and then I fall back to sleep a lot easier. I took a week break from one herbal blend, then went on a different one about a week ago. After I finish this one, I’ll take a short break and possibly start the adrenal one again.

    Well, I think that’s it for now. Better jump in the sack to try to keep my sleep rhythm right. But it was nice to yak with you at the wee hours of the morning. It was nice to have someone to let it out on. Ha ha! Thx.

    Marla

61. Patti said,

    September 5, 2006 at 7:14 pm

    Mom saw her naturopath (okay – I just found out I’ve been spelling that wrong after two years! geesh) today. She made lots of changes. Some I’m concerned about, although I do understand why she did them. Dr. Reuter eliminated mom’s beet juicing (cucumber, lemon) juicing, liver cleanser capsule that she took on days she couldn’t juice, chlorophyll, algaes (blue green, chlorella, spirulina), yew tea (and drops – this was a tincture) and pineapple and black sesame seeds.

    When she had mom give her a run down of what she does during the day she about choked. She felt like mom was spending too much time doing “supplement” stuff and wanted her to focus on getting sunshine, working in her garden, etc. Dr. Reuter felt like Dr.Kou is handling the major blood builders, liver cleansers, etc. with his formulas (she always gets copies of them because she practices chinese medicine too). She also felt like mom needed to focus on whole foods in addition to the chinese teas. Since the teas are only twice a day they are much less cumbersome then all of the supplement stuff she was taking. On the one hand, I understand, but on the other hand, some of that stuff was really helping mom. The algaes are really what was keeping her bowels regular. What’s the first question they ask you? Are your bowels moving? So that’s going to change rapidly. But I guess we’ll wait and see. But mom is also relieved to not “have” to do all that stuff either. The biggest problem I see is she won’t stop this stuff. Why? Because she paid for it and can’t stand the thought of wasting it! Ugh!!! Double Ugh!! She’ll use it until it’s gone and not replace it but that is going to take a long time with a lot of this stuff. Especially because we recently just replenished her supply with a number of these items. I hope she’ll stop but I know her well enough to know she won’t. Dr. Reuter’s other concern was that mom will get so much going on in her body that things won’t work as smoothly as they should. Dr.Kou also expressed this to us a few weeks ago. Already, mom is not allowed to take any capsules because her platelets are so low. They want her emptying all capsules into apple sauce and taking them that way.

    The platlet transfusion mom got last Wednesday is not holding. I don’t think it’s because of something in her body (I guess there’s always that spleen eating platelet possibility) but because the person’s platelets she got just weren’t real strong or something. Maybe they were too old. Back to that expiration date thing. I’m considering calling the red cross and asking them how long they hold those before they consider them “no good.” She has one mouth sore started which means she’s around the 7000 range. We’ll see if she can make it to next Wednesday for another platelet transfusion. That would be 14 days since the last one. Might be a little optomistic. Don’t know.

    I guess that’s it for now. Until later……..

    Patti

62. Patti said,

    September 9, 2006 at 9:43 pm

    Took mom in today (saturday) for another bag of platelets. Her count was at 7000 but she was popping mouth sores all over the place and her gums were bleeding spontaneously in two places. We wonder if she could have waited until Monday but in hind sight are glad we didn’t. Figuring she probably would have been much lower by then. Of concern is her HCT which is already down to 24.6 with more than 1 1/2wks to go before her next “planned” transfusion. Hmmmm. Wonder what’s going on. Also, she has white cells, lots of them. Enough (still in the “normal” range) that the onc. wanted to know when her next visit to the clinic was. Makes me wonder if they did a smear and saw something. Hmmm. Don’t know if they’d do that at the hospital without an onc. actually telling them too. Not sure I’m too concerned about the whites since she’s had this many before and they’ve gone back down after several weeks. However, in light of the platelet changes in the past 4 weeks it does cause one to wonder if something is going on. I guess only time will tell.

    For now, it’s yet another exhausting day. Today was going to be major clean and start pulling stuff out for winter. Nope. Not happening, again. I told my husband I need a maid. At least I got some peripheral cleaning done and people can walk in my house again without too much embarrassment.

    Don’t go to the doc again until the 19th so we’ll see how things go. Until then…..

    patti

63. Patti said,

    September 11, 2006 at 7:24 pm

    Marla,

    Do you about how much platelets drop per day? Mom was at 7000 on saturday. Would she have waited until Monday? We were wondering if they drop like 1000 a day or what? I’m sure there is no cut and dry number but maybe just an idea. Is it hundreds? Thousands?

    Thanks,

    Patti

64. Administrator said,

    September 12, 2006 at 9:22 am

    Hi Patti:

    If those 7K platelets were your MIL’s, then it is possible that she would not drop anymore. However, if part of those 7K were “transfused” platelets, then it’s likely she would drop most of them by the next day. From my experience, I dropped about 10K of transfused plts each day. So say I had a transfusion that boosted me up to 70K, each day I would go down “about” 10K, so the next day would be 60K, then 50K, then 40K until I hit my “own” plts which was around 1K and 2K. Then it would stop dropping. So that’s what I mean about it depending upon if those 7K were your MILs OR the transfused plts.

    That’s a “general” idea of the rate of drop. She could drop more or less, but from my experience, approx 10K was the rate of decline per day.

    Oh, another thing was that about 80K or 70K would be tops for me. For instance if I had a really good batch that brought me up to 110K, then next day I’d be back at 80 or 70K–that’s about a 30-40K drop in one day. Then each day thereafter I dropped 10K. For me, I found that I just wouldn’t hold on to “more” than 80K or so with an initial transfusion. That’s the way my body handled it.

    Take care!

    Marla

65. Patti said,

    September 12, 2006 at 10:24 pm

    Thanks, Marla. So far, mom’s low has been 3000. And I believe they would have continued dropping had she not had that first platelet tranfusion. So I believe the 7K was definately part of the transfused platelets. I guess we made the right decision then. We were both wondering if she would have made it to Monday for a transfusion, but probably not with what you said.

    I am very very anxious for this next CBC on the 19th. I’m concerned with the major/quick change in platelet production (or lack thereof all of a sudden) and the white cells that we’re looking at AML. I guess that wouldn’t change anything but somehow it’s a little scarier. Okay, sufficient is the day for the evil thereof. I can’t worry about it now. She seems to be doing pretty well at this point anyway.

    Thanks again,

    patti

66. Patti said,

    September 19, 2006 at 9:10 pm

    Today we met Dr. Anapuma Karup for the first time. Can I tell you how extremely excited I am that she is now mom’s doctor?!?!! What a sweet sweet lady. She’s young and smart and all for the natural. We are thrilled. I found myself being able to be quiet and just let her talk to mom instead of being the one to stand between the doctor and mom in some sort of protective mode. We are very happy.

    On Sunday mom popped up with a rash all over her body. Parts of it were raised, most was not. We thought it was an allergic reaction to the exjade. When we showed the doctor today she felt like it was a delayed reaction to the exjade also. Mom will go one week without the exjade and we will reevaluate. She was supposed to take a benadryl tonight to try and stop the reaction but Dr.Kou did moxa on her today and by the time we left his office the rash was nearly gone! You could barely see it and when we walked into his office it was bright pink and red all over her trunk, back and arms. I told mom we need to carry her moxa stick everywhere we go so when she has any reaction to platelets, whatever we can just do moxa intead of getting benadryl. We laughed – I’m sure the nurses would just love if we started burning this pot smelling stuff over mom’s skin! NOT! Dr. Karup is also having mom’s skin looked at just to make sure the few nodules she has aren’t cutaneous leukemia. We’ll reevaluate those spots next tuesday and decide if she wants the derma. appt. kept or cancelled.

    Mom’s counts looked decent today. Her hbg was 7.3. Staying within the range she’s been in for most of the past six months. Her hct 22.4 and platelets 6000. White cells were back down to 1300. Dr.Kou and I graphed mom’s progress with her lowest counts over the past six months and there has been a steady increase in both the whites and reds (hgb) since she started seeing him. He said at the one year point her hgb shouldn’t be below 8. She runs between 7.3 and 7.7 so he’s probably right if we keep on this path.

    So while she needs platelets pretty consistently every ten days, she still seems to be doing okay. Boy there are times when we really wonder. Tomorrow she’ll get two units of blood and a unit of platelets. But she is still kind of pink which is a really good sign.

    One thing I wanted to mention that we ran into at the hospital the other week is that the nurses would not listen to me regarding how much pre-meds mom needed and about turning down the platelets which were running into her at mach IV. I have since talked to Marla and I will turn them down on my own from now on. Tomorrow she’ll be at the clinic and they do a great job so I don’t have to worry. But at the hospital I will probably just turn them down myself if they are too fast. I wonder how others deal with nurses that refuse to listen when you tell them what the patient needs?

    Okay, I’ve got to go. Busy day tomorrow.

    patti

67. Patti said,

    September 21, 2006 at 3:43 pm

    Marla,

    I mentioned to you on the phone that mom’s naturopath told her to stop juicing and you and I talked about that at some length. I spent some time talking to mom and she thought juicing enough to drink 3 glasses in one day and then skipping the next day she could handle. What she’s not sure is what she should be juicing besides the beet concoction she does. I mentioned she could do an apple, carrot and celery in one also. She was wondering if you could give us ideas on what kinds of things she should juice together?

    Her rash hasn’t changed since the original fading that happened after the moxa. Not sure how long it takes to get this thing to go away. She still has the two skin nodules that aren’t budging so I think she’ll be getting those biopsied next week.

    That’s it for now. I’m still soooooo tired. Three nights in a row of 3-4hrs of sleep and this darn bug I’ve got on top of it. I don’t think my body can fight the bug because I’m not getting enough sleep. But why can’t I sleep?????!!!!! Arrrgghhh.

    Ciao,

    Patti

68. Administrator said,

    September 21, 2006 at 8:53 pm

    Hi Patti:

    The juices that I felt helped me were made from Romaine lettuce, celery, a stick or two of carrots or a small apple. Some juicing advocates don’t recommend using “any” fruits or warn against using too many root veggies like carrots and beets because of the sugar content. So I just did it a little partly for flavor and partly because Dr. Lorraine Day and people like Norman Walker and George Malkmus swear by it. Sometimes I’d put in a cucumber or sometimes I’d add in some parsley. I didn’t particularly like parsley, but they say it’s supposed to be really good for you. Then I would mix in some organic whole raw cream for the good fats needed to help assimilate the fat soluble vitamins from the veggies.

    Regarding juicing Romaine lettuce, I would juice one whole head per glass. And as I mentioned to you over the phone, I juiced lots and lots of it! So at one point I was probably juicing 4 head of Romaine a day “plus” eating salads during lunch and dinner! Ha ha! May have been a bit much, but something worked. . .

    If your MIL doesn’t have any problems with her thyroid, she can also try some cabbage juice, but only do it if she’s gonna drink it right away. Cabbage gets pretty strong if you let it sit for a while. And only do it occasionally because cabbage is supposed to be goitrogenic–that is, it interferes with thyroid function. And that’s why it’s very important that she doesn’t have low thyroid function if she wants to put in a little cabbage every now and again. Broccoli is also goitrogenic, but is a good source of C.

    I also recommend some kind of raw meat dish like ceviche. You basically cut up the fish in chunks and marinate it in lemon or lime with some spices and if you want some minced scallions. By the next day it’ll be ready to eat. It’ll look and taste cooked, but it’s technically raw and has lots of nutrients, including live enzymes. Your Nourishing Traditions Cookbook has a recipe and also has safety instructions regarding freezing the meat first to safeguard from parasites.  Ceviche actually tastes pretty good!  You can eat it with a corn tortilla, ummm and avocado.

    Other raw meat dishes I liked were Kibeh, but don’t know how your MIL will feel about that one. There is a recipe also in the Nourishing Traditions book. Take a look in that section, Patti. It may be good for your adrenal issue. I still haven’t found my Pottenger’s Cats book, but when I do I’ll try to relay some info from it.

    I’ve been sleeping much better lately. I guess those herbal liver extracts helped get me over a hump or something. I don’t wake up regularly around 2 anymore! Every so often, yes, but not regularly like before! I hope this lasts.

    Oh, just to let you know, I found some organic mung beans and had some the other day. I still have quite a bit, so will be slipping them in my meals every so often.

    Okay, hope this helps,

    Marla

69. Patti said,

    September 27, 2006 at 10:35 pm

    Mom’s visit with Dr.Kurup on 9/26 went quite well. Her ferritin was down 200 even though she’s only on 250mg of exjade. We have no plans to increase it to the 500mg now. We were just expecting the exjade to hold her ferritin at 3000 since she’s still getting transfusions. Everyone was thrilled to see even that small of a drop considering she’d had a transfusion during the 2nd week of using the exjade. There is no way to know if/how much the mung beans and jujubees are helping with the chelation. All we know is Dr.Kou said they would help chelate the iron and boost her platelets.

    Her rash is gone and she’s taking the exjade every other day this week and then everyday next week and thereafter as long as she doesn’t have anymore rash issues. She does see a dermatologist on Monday to look at two spots on her back that are unrelated to the MDS. Her platelets are starting to drop as her mouth sores are returning. We figure either Friday or Monday she’ll need platelets again. She looks very good right now and feels good so we are thankful for that.

    Guess that’s it for now.

    patti

70. Patti said,

    October 2, 2006 at 8:38 pm

    There are times in this battle when one wonders just exactly what it is God is doing. Up and down, down and up. It is such a roller coaster. And such was today.

    On Friday we checked mom carefully for signs of needing platelets. She had very few mouth sores and they were literally pin points. So we just checked her daily over the weekend and she “seemed” to be fine. Today I picked her up for a dermo appt. today and checked her mouth. She had one really big mouth sore (almost quarter size) and her teeth were bleeding pretty hard. Okay, it’s time. No big deal – so we thought.

    Her appt. with the dermotologist to check out some spots on her back went fine with a few annoyances. The guy is a pompous donkey (I’m trying not to swear on your blog, Marla)! After he literally talked like an auctioneer for 15 minutes explaining all of the statistics about skin cancer and why babies under 6 months should have NO sun and everyone from birth on up should use sun screen (I was almost turning blue waiting to explode by this point), he finally checked mom. Afterwards he tried to give me samples of sunscreen for my kids and I said, “no thank you. Sun screen causes skin cancer – not sun.” Oh my gosh! That guy about exploded. Then he made some comment about how it’s good we have older folks like mom to teach us younger folks how dumb we are. I still get worked up thinking about this idiot. Pompous donkey is all I can use to describe this guy.

    Off for a CBC. Shock and awe? Mom’s hct was 23, hbg 7.6, white cells up again, neutrophils up again (1100), platelets 2000. Hit with a ton of bricks. We were not expecting a blood transfusion until next week. It’s only been two weeks! We figured her platelets were at 5K or 6K. What a surprise this all was. She said she’s not had as much energy but she didn’t think much of it because she was supposed to be a week away from a transfusion. I can’t believe she bled a week’s worth of blood into her gut from the low platelets. If she had, one would expect it to show up in her stools and urine. Maybe I’m wrong though. She got a bag of platelets today and will get a transfusion tomorrow.

    It sounded like Dr.Karup might be aiming to do a BMB in two weeks to find out what’s going on with her marrow. Mom is adamantly opposed to this. I am somewhat neutral, maybe leaning towards it wouldn’t be a bad idea. Her thinking is it will change absolutely nothing the doctors do and my thinking it it might change what Dr.Kou and Dr.Reuter do. But I also understand her not wanting to go through that. She would have to make sure it was done right after getting platelets though. But really the defiance I heard in her voice had more to do with the fact that she didn’t want to face/hear what was going on.

    Another thing that has popped up is mom has swelling ankles. Before this has always indicated she’s having trouble sloughing fluid off of her lungs/heart. It’s only been since she’s started the exjade. Exjade causes damage to the liver and kidneys. After being the on the exjade for just two weeks both of the labs on her liver and kidneys came back worse then the last time. Still in the normal range but definately changed. I believe the damage would be more opportunistic to whichever organ is more susceptible. For mom, that would be her kidneys. Which would explain the extra fluid in her body. Her kidneys being unable to get it out. I told her to start taking two kidney supplements a day instead of one. We’ll see if that helps, if not, we’ll cross that bridge when we get there. She and I talked about the risks vs. benefits of the exjade and she felt like the risks of not taking it were higher then the risks of taking it so she will stay on it. I did note today that the skin around her eyes and nose is no longer orange from the excess iron.

    Okay, I think that’s it. Lot’s to consider and think about. My personal opinion is that her body is flirting with AML (thus the white cell counts all over) and somehow each time her immune system fights it back for awhile until it tries to creep up again. I have no idea if that’s possible but I think it is. We can fight a cold off but still have symptoms, right?

    goodnight.

    Patti

71. Administrator said,

    October 3, 2006 at 4:21 pm

    Hi Patti:

    Thanks for the update. Yes, lots to consider! Your comments on the “sun” had me laughing especially the sun donkey. Ha ha ha! A discussion on the sun may be a good topic! You can share what you know about the sun, and I have some things as well that I can share. Perhaps it’s all the same stuff, but if there are additional things you know that I don’t or vice versa, I’d like to know! Do you have any specific books that you’ve read wherein you learned about the benefits of sun and cancer? I’ll try to start a new thread for that.

    Regarding the BMB for your MIL, what kind of info do Dr. Reuter or Dr. Kou need? Have you asked them if they think the BMB is necessary? Just curious.

    Take care!

    Marla

72. Patti said,

    October 3, 2006 at 11:11 pm

    This was somewhat of an emotionally grueling day.

    Mom got two units of blood today. Both really good ones. Not due to expire until the end of the month! She handled well, as she usually does. Big issues and concerns that mom’s ankles are so swollen and no one seems to be screaming kidneys. She took a lasix between units of blood (that’s standard for her) and her regular kidney supp. this morning but her ankles and feet are still way to swollen tonight and her blood pressure is up 40 points. I did talk to an on call doctor and he said to give her another lasix tonight and check her in the morning. If she’s the same, call the doc. Her feet have been swollen for 3 weeks she said. I don’t know why I didn’t notice it until yesterday. I can’t figure out why she’s having trouble getting fluid out of her body. I told her today to increase her kidney supp. to twice a day and see if that helps. Mom also informed me today she’s been having terrible bone pain in her lower legs when she stands after being seated for awhile and her legs don’t feel right underneath her then.

    While mom was on her first unit of blood I saw my naturapath (she’s mom’s too). We spent the first half hour talking about mom and it was difficult. I told her what has gone on this past two days and she told me her assessment was that mom is going downhill faster every week. I asked her about my theory that mom has been fighting off the leukemia for some months now and she totally agreed. She thinks mom’s body has gotten to the point where it can no longer fight off the leukemia and that is what she believes mom now has. We talked about a BMB and her bottom line is if mom doesn’t want one, regardless of what the doctor says, then mom doesn’t get one done. She said whatever info her and Dr.Kou would glean from a biopsy is probably of no use at this time.

    Dr.Reuter asked about arrangements for Marie, both financially and living quarters wise. We discussed a little bit of the family dynamic involved and she advised me that Ron and I had better quickly have Ron removed as the executor of mom’s estate if we have any concerns that his brother (really the wife) would contest mom’s will. That’s info we had never considered. We discussed mom’s level of knowledge about where her disease is at and the fact that she just doesn’t want to know. In doing so, she has not prepared Marie in any way. Not much we can do about that except hope that my daughter and Marie have another one of their conversations where my daughter enlightens Marie to the truth. Somehow, coming from another young person makes it easier for Marie to listen to. Ron has had some conversations with Marie but she won’t listen to him any better then anyone else. She is only going to face the truth if it comes from mom.

    We discussed the role that Ron and I play in mom’s care and if there’s anything we can let go to our sister-in-law (since his brother is working full time). In the end, after describing the situation (the “I can’t wait until a rich relative dies so I can inherit the money” ) she asked me if I can hold on for a few more months. I’ve survived this long, what’s a few more months? She said she has no way of knowing if mom has a few days, weeks or another 18mos. but her feeling is the time is short. She also laughed and said mom is the energizer bunny! She just has an amazing constitution. We will hire out the care of her lawn/garden to a family friend and not give mom the choice about that. So that takes some pressure off of Ron. Which is a big help considering he fell out of a tree he was trimming last week even though it didn’t need trimming. She just wanted it done! Arrrgghhh. She’s used to dad who did everything when she wanted it done. Course, dad didn’t have another house to take care of either! But just letting go of that one thing will be a help. It’s a lot of work taking care of two homes.

    Dr. Reuter discussed hospice with me and wanting me to make sure Ron and I have a plan in order for that. I don’t even know where to start. Because we have no obvious time frame here I don’t know how long she’d be on hospice, if we’d need to have her in our home or keep her in hers, what to do with Marie during that time, etc. etc. etc. I just don’t know anything about it. It’s something she wants he and I to discuss since mom won’t. Really, mom needs to make this decision but because she won’t it is being pushed onto us to make for her.

    I talked to my little sister about the bone pain and she said that is a sure fire sign of leukemia when taking into account her dump in platelets over the past month, the RBC’s not lasting as long as they should, the leg swelling, etc. That’s her thought at this point. I know everyone is leaning that direction, including the doctor. She mentioned the white cells again on tuesday being an issue. We see Dr.Karup on the 17th and perhaps that CBC will give us more info. That’s all we have to go on for now. Her next platlet transfusion *should* be around the 13th. This was a small bag of platelets so it might not last that long. Her last bag was 420cc’s and she went 12 days (okay, she should have only gone 10), this one was only 220cc’s so I’m not too hopeful we’re going to get more then a week out of them.

    I guess that’s it for mom stuff right now. Ron and I had long talks this afternoon and evening. Beginning to discuss issues that will arise with Marie and what we’re going to do about them to be unified with her. He caught her trying to hide something from him again today (she does this all the time!) and he gave her the business. She tells our kids to hide stuff from us all the time so she (or they) won’t get into trouble. That has got to stop! We haven’t yet figured out how we’re going to make that stop other then talking to her but I don’t think that’s going to fix it after 48yrs. So, we’re still working on that one. Anyway, we covered a lot of ground together about different steps we’ll take along the way and just trust God will take care of what we need to do.

    That was the end of my conversation with Reuter about mom.

    We are making some adjustments to my hormone situation but I will post that under Anything goes.

    Until next time……

    patti

73. Andrea said,

    October 7, 2006 at 5:12 pm

    Wow, Patti, big developments. Your naturopath sounds really wonderful and thinking about all your needs, even the thing about the contested will, getting some help, etc. These are really really rough times and it’s made harder by the fact that your mil seems to not realize what is happening, at least not yet, and the Marie situation. Will she be living with you when your mil dies? Is she living with you now? Will you be her legal guardian?

    I have a retarded sister-in-law so I am aware of the power struggles that can happen around the mentally disabled. It’s can be very ugly. I hope and pray that you get the support and love you need through these times.

    The physical, material reality seems to be that your mil has leukemia and will not be with you much longer. The spiritual reality is that God is getting ready to take her home. Focussing on that spiritual reality has helped me through losses.

    Those elderly ladies with strong constitions, though,–they can hang on for a long time. My own grandmother, in her 90s, was expected to die any day for about a year! I always wondered what kind of dialogue might have been going on between her and God toward the end! She had a reputation for being late for everything!

    Hang in there, Andrea

74. Patti said,

    October 10, 2006 at 7:14 pm

    ‘Nother day out. Mom’s platelets were at 4000 today (low, as we expected) and she got a unit of platlets. She had an appt. with Dr.Kou first and he did some moxa on her and said no needles again (acupuncture) until her platelets are steady at 10K. He did adjust her formulas a little bit adding in rhubarb and jujubee into the herbs to help her platelets more. Both he said they have to be used carefully as they can either increase platelets or cause bleeding depending on how much one uses. He took her off of eating the jujubees because he wanted to add them to the herbs and didn’t want to give her too much. She goes back to see him in 2 weeks. He says the swelling in her legs is related to low red cell count. Not sure. Although, when she was diagnosed her legs were swollen also. He said since she was 12 weeks between transfusions back then that her body had enough time to level the fluid out. Now, her body doesn’t have the time between transfusions and thus is unable to get rid of the extra fluid (he doesn’t count 3 weeks as “time between transfusions”).

    Bonnie the NP looked at her ankles and said we may have to have mom take lasix like every 4 days or something. She didn’t see the need for her to be on it daily. I am thankful for that because I really think they cause too much damage to the kidneys. Unfortunately, the kidney supp. is just not strong enough to slough off the fluid and keep her blood pressure down. We will re-evaluate next week when we see Dr.Karup again.

    Mom has started to experience diarrhea with the exjade even though she’s now only on 125mg. a day. I don’t understand why. She was fine on the 250mg a day. We’ve made some diet changes to try and counteract this. We removed: prunes, all the algaes and lowered her water intake a little to help with the swelling, also removed any extra salt in her diet. For her kidneys we removed potassium, oranges and potatoes. We’ll see what happens. She really didn’t eat those things too often anyway. Oh, Dr.Kou removed onions, garlic and ginger from her diet because of bleeding. I cannot tell you how bummed mom was about the onions. She uses lots of them. I am finding that there is this fine line between the foods that help heal but then sometimes can be detrimental also. She’s feeling more and more restricted in her diet which I don’t think is good. But she’s also not juicing but maybe 3 days a week. She’s just too tired to do it anymore. I can’t blame her and yet I feel like this is the most important thing she can do. Even my husband and I said that we will be starting our whole family on one juicing a day at some point. Coming from my sugar sweetened, corned beef eatin’ husband, that’s saying a lot!!

    It was another long day. We left at 8:00am and got home at 5:30. We are both exhausted. Needless to say, it was Subway for dinner for all of us. Yuck. We’re running out of quickie to eat meals when we’re tired. I think I’ll be glad when I never see another pizza or subway sandwich again!

    Andrea – yes. My SIL will live with us and we will be her guardians when mom goes home to the Lord. We are feeling much better regarding any contesting of mom’s will that we thought might take place. Ron had a long and serious discussion with his brother and laid things on the table. His brother gave us his word (which is worth something) that he will not contest mom’s will. What he did express was surprise and disappointment that he is not the executor of mom’s estate and that he and his wife would not be getting Marie. He felt that as the older brother that honor should have been bestowed on him. What? I won’t even go any further with that one because if he can’t figure that one out – duh! Nonetheless, we do not feel the need to make any changes at this time and while his word won’t stand up in court, like I said, his word means something. It always has. So it shouldn’t be an issue. I cannot tell you the relief we have for that. My husband did a very good job laying things out for him and I am proud of him for that. He’s a man’s man.

    I have to say that mom’s NP today was somewhat encouraging. She told us that so many times we thought before that mom was not doing well and winding down and she’s pulled through like none of us would have thought -so she said she no longer considers any of mom’s counts bad news because she doesn’t see a trend. If she sees a trend she’ll let us know. I almost laughed because last week she told me I’d better start looking into hospice. BUT mom’s white cells were back to her low normal again! She was expecting they would climb because she (like me) thinks mom is flirting with leukemia. So, she’s changed her mind (for the short term). But also told me not to get too comfortable – just cautiously optamistic.

    Okay ladies, I have to share some humor that has happened with my kids in the last few weeks because I need to end this on a funny note.

    1- my 7yr old son was getting ready to play golf on the computer and the night before my husband didn’t shut the computer down “right” so Luke got the old “windows was not shut down properly. Your computer is scanning the C drive.” So he says, “dad it says you didn’t shut the windows down correctly.” He climbed on top of the desk, opened the blinds, opened and closed and window and reclosed the blinds. “I did it,” he said. I am still laughing at that one!

    2- We had to get rid of our new dog after only three months. It’s a long story but suffice it to say the dog would not listen when it wasn’t behind the gate or on a leash. So we told the kids the dog had to go because he wouldn’t obey and we would get another dog for them. My husband and I had always joked that if we could train this dog we could train our daughter (the 5yr old) because they were both the same stubborn. About a week after we had gotten rid of the dog we were eating dinner and Peanut looks up and says, “daddy, to they have a pound for kids that don’t obey?” Umm. I’m thinking she worried for a whole week about that! Way too funny. But needless to say, her behavior has been a little better lately. Hmmm. Wonder why!

    Okay, hope those made you laugh. Have a good evening and hope everyone is well. I’m feeling a little better tonight – even if I am tired.

    Until next time,

    patti

75. Administrator said,

    October 10, 2006 at 9:36 pm

    Hi Patti:

    I got a chuckle out of your funny notes, heh.

    Regarding the cooking thing for the fam, one thing I’ve found that’s quick and easy cooking is using a crockpot. For the days that you don’t have much cooking time, just throw in a bunch of meat (I’ve thrown in a whole roast or a whole chicken w/o cutting them up) and veggies in a crockpot, and let it go the whole day. By the time you get home, it’s all cooked and very tender. Sometimes I’ve even thrown beans in there with all the meats and veggies and we end up with a big stew. Just make sure you put in enough water so that it doesn’t dry out. You don’t need much water, unless you’re gonna use beans.

    Okay! Glad you’re feeling better!

    Toodles for now!

    Marla

76. Patti said,

    October 11, 2006 at 9:07 pm

    Hi Marla,

    You’re going to laugh at me. I don’t own a crockpot. But I’ve decided that is definately the way to go. My husband and I don’t usually exchange Christmas gifts (unless he’s got diamonds for me!! ) because if one of us wants something throughout the year we just go get (talking it over with each other first, of course). But there are three things I want right now. A big crockpot with a removeable crock for cleaning, one of those food saver air sucker outer thingys (you know, so you can remove the air and store food in airtight bags?) – the real name is slipping me right now – and a programmable coffee pot. Hee. Hee. That’s so my water is hot when I wake up in the morning! I think I’m going to hit him up for the crockpot before Christmas because it would really eliminate having to get take out on busy days. That saves money and health! Money talks, ya know?

    I was going to ask you a recipe question and now I can’t remember. Oh well. It’ll come to me later. Thanks for the suggestions – definately need a crockpot. How did I make it 11yrs without one?

    Patti

77. Patti said,

    October 18, 2006 at 7:40 pm

    It’s been a very busy few days and I’m exhausted to say the least. We had a marathon 5 doctors appts. yesterday! Not all for mom, but wow! Appt. with mom’s naturopath (Dr.Reuter) went well. She suggested that the swelling in mom’s legs would also be helped by eating more potassium rich foods. She thought the excess sodium needed to be balanced out with more potassium. So mom is increasing potassium rich foods in her diet. She was fine with my having had mom restrict her salt intake for the moment. We will re-evaluate where things are at in a month. Certainly her kidney function is a concern but with nothing more serious going on it doesn’t seem to be a barn burner. I feel better about that at least.

    Her appt. with Dr. Karup (new onc.) also went well. We LOVE this lady. Did I tell you how much we love this lady??? She is so sweet and very thorough and all for mom doing the natural stuff before drugs! We talked about the kidneys and ankle swelling, blood pressure stuff. She liked that we were trying to adapt mom’s diet for the swelling/kidneys and said she’d much rather we do that then to pull out the big guns (lasix) because then you start having to worry about low blood pressure and dehydration. Dr.K said she felt like we were doing a good job keeping on top of it and she didn’t feel the need to interfere with that. She said one thing about mom’s kidneys that we can’t rule out is that she is 76 and sometimes the vascular system just starts to wear out.

    She’s also very accomodating. Mom’s blood counts didn’t necessitate a blood transfusion this week but will next week. She said skip the blood draw next week and let mom keep every drop she can. Just go for the transfusion. So today mom got platelets and next Wednesday she gets two units of blood and another unit of platelets (which is a good thing). They had to stop mom’s platelets today before they were done because she reacted to them (even with the pre-meds). Being a depression era person mom about freaked out that they were throwing them away! She calmed down a little when I reminded her that she was scheduled to get a unit next Wednesday and what she did get today will hold her until then. She settled down quite a bit then. Dr.Karup okayed us to give mom platelets next Wednesday because she would have been due Friday so rather then us have to go for blood on Wednesday and platelets Friday she agreed to just let us do them both together. She said the extra driving stress wasn’t worth it on mom or me. Again, we are just so thankful for Dr.Karup. On the way to the next appt. we talked about what life would have been like if we’d had Dr.Karup this past two years and mom and I both decided that we needed those other idiot doctors so we could learn to advocate for mom better, make sure of what we wanted and just force ourselves to be more informed. Now that we are able to do all that, having a good doctor is easy. So, we decided it wasn’t all for loss. God has a reason for everything. Next appt. we see the NP whom we like also and she works soooo well with Dr.Karup.

    The other appts. were for me and Kassandra. Peanut had her eyes checked because I was having a hard time telling if she was struggling to see her school lessons and piano books. He says she’s good and just to keep her face outta the books so she’ll learn distance reading. We are thankful (and so is she!!).

    I read tonight a story from the MDS forum of a wife who lost her husband because of a disease that was in a blood transfusion he received. It had never occurred to Ron and I that that could happen. It makes sense in that we know they cannot possibly test for every disease possibility that exists in a person’s blood donation but it did strike us as yet another risk to this whole disease process that we had never even considered. It’s NOT information we’ll be sharing with mom. Who needs that?!

    Off for now. I’ll post on anything goes regarding hormone stuff, etc.

78. Patti said,

    October 24, 2006 at 11:05 pm

    Oy. My day started at 6:15am and ended with mom at 9:00pm tonight. What a ride! She was scheduled for a platelet and blood transfusion tomorrow (wednesday) but when she came over for piano lessons yesterday it was obvious she was not feeling well. Really much lower then normal for needing a transfusion. She told me she felt fine. However, after Ron saw her and he and I talked he told her she would tranfuse today. She then proceeded to tell us she was kind of relieved because she really wasn’t feeling well. Arrgghhh. Why doesn’t she just tell us that?!

    We typed and crossed yesterday and since we were only going to be in there for 10 minutes we took Marie with us. She has never seen the clinic that mom goes to so in some ways it was good for her to see it. And yet, her anxiety at being there was incredible. When Marie gets nervous she wrings her hands like you can’t believe. I just could not get over it. But she enjoyed the drive at least. She doesn’t get out much so she enjoys driving places and it’s pretty here right now.

    Today’s tranfusion started off with a bang. About a half hour into the platelets mom got hives. The nurse shut off the platelets and we had to decide if we were going to do an IV hydrocortisone or throw out the bag of platelets. Realistically, if we’d tossed the platelets mom would have had to go back in on Friday to get another bag because she didn’t get enough in that half hour to even go until next Tuesday. We spent a few minutes talking and went with 50mg of hydrocortisone. A low IV dose by most standards. We waited a half hour to see if it would work. The hives weren’t gone but were definately getting better and she wasn’t itching anymore so we turned the platelets back on very very slowly. It ended up taking 3 1/2hrs to finish a 260cc bag of platelets! Normally a 1 -1 1/2hr bag. We started her blood and a half hour later, hives. Arrgghh. Not bad, but we actually wondered if it was left over reaction from the platelets. That’s what the nurse thought it was. We gave her 25mg more of benadryl and just kept the bag going. Time was getting tight for finishing the transfusion. We managed to get through the rest of the transfusion but when I got home at 6:30 – more hives started popping up. She wasn’t itching because she still had benadryl in her system but it was obvious she was still reacting. Do not know at that point if it was still platelets or now if it was blood reaction. The nurse told mom she has NEVER had a day like that with mom. Very stressful and really not sure what we should do because it was so unusual. When we gave her the second dose of benadryl (she got one before starting the platelets) we really debated giving her 25 or 50mg. We already knew mom was going to be knocked on her tail from all the benadryl so we opted for the 25mg hoping it would kick the hives. In hindsight, I wonder if we should have done the 50. At this point, I’m just going to be looking for an alternative to benadryl and hydrocortisone for her.

    Needless to say, this was quite a day. I left for about 15 minutes to grab lunch and that was it. I usually take a longer lunch and at least visit my folks during that time. On the way home mom started having trouble with fluid overload. She had taken a lasix between blood bags as usual but sometimes the extra fluid just overwhelms her kidneys. She’s been taking some pretty good kidney supplements but they just couldn’t keep up. Dr.Reuter had me order a dandelion and cornsilk tincture for her to take daily for the fluid build up but they haven’t arrived yet. We could use them tonight! So, another lasix and a little potassium later (to make sure she doesn’t lose too many electrolites). When we got home Marie just lost it. We had been gone almost 3 hours past what we told her. Ron sat her down today and spent a long time explaining what happened, that it wasn’t too serious and that it would just make us a little late. He also talked to her again about death/dying and that we would always be here to take care of her, etc. etc. He tries to take those moments and really try to make her understand that despite what mom has told her (God WILL heal mom and that mom won’t be leaving her) that we will all die and she needs to understand that if the Lord heals mom now, he will take her someday. Maybe in 5 months, 5 years, etc. but she too will die. It’s not a pleasant conversation, but someone has got to prepare Marie and he’s the best person to do it. There is an established relationship there. But she was cried like a baby when mom got home. We had to help mom walk some so that really freaked her out. At dinner she told Ron he had to spend the night at their house in case something happened to mom tonight. Mom kept telling her that wasn’t necessary and when I got mom alone I told her to let Ron do that so Marie could feel safe and secure and sleep better. Finally, mom agreed. It wouldn’t have mattered if she didn’t agree. Ron would have done it anyway. He’s good son.

    Long day. Some things we are going to have to work on. We’re either going to have to do HLA matched platelets or get direct donors. Directed donor seems more of a pain because how do we find those people? Guess? It seems like that’s the better progression though and then save HLA matched platelets in case she becomes refractory. Not sure what we’re going to do but we need to do something fast. She’ll be due for platelets again next Friday if these hold from today. One thing we’re not sure of is if having an allergic reaction actually shortens the life of the blood/platelets somehow? She told the nurse and I today that she would just live through the itching and hives and we kept trying to explain to her that that was bad. It’s not like living with a cold – it’s not good to have an allergic reaction. Actually, we’ve been through this before with mom but her memory has gotten really bad. She won’t admit it but I can guarantee the reason she can stay alone right now is because Marie is her memory. She reminds mom of everything. Even the need for mom to write things down so she won’t forget!

    Mom has been exhibiting signs of hearing loss this past few weeks (actually longer then that) and I believe it’s Exjade related. I asked her yesterday if she felt like her hearing was affected and she said no but today when I asked her where her notebook was she said I told her not to bring it. Huh? I told her to bring her no – tebook. She only heard no. This is happening a lot. It’s really noticeable on the phone. And was not a problem until she started the Exjade. The pharmacist told me this could happen. Also, the 125mg a day doesn’t seem to be working. The skin around her eyes is orange again. I think we’re going to have to do 250mg a day if we want to keep her iron under control. We did a ferritin last week so we’ll see how it is when we go to the doc next. She is now seeing her onc. every two weeks instead of 3 because it appears her transfusions are not holding as well. She’s at about 2 1/2 weeks now and that is really stretching her to do that. For mom, every day matters to her. She gets mad if it’s not exactly 3 weeks.

    Which brings me to my last point of the night. She’s getting tired of fighting. She has slowed her juicing way down because she’s just too tired to do it. Today she didn’t bring her chinese herbs because she just couldn’t bring herself to do it. You have to understand that she was religious with these things knowing they were the only thing keeping her from getting leukemia. So mom, is just getting tired. It made me very sad to see her face and body language when she told me that. I guess because I feel like she’s giving up somewhat. I also think that at home she’s not being as diligent with her health protocol because she’s just too tired. I don’t blame her – it just makes me sad. I see in her more of a resolve now, that God may in fact, not heal her on earth. Perhaps God needed mom to get to that point. I don’t know. But it does make my heart a little sad. Even as I cry to God that I can’t take much more.

    It’s almost 11:00 now. I didn’t get to see my kids hardly today. I got to kiss them on the head goodnight. That was it. Daddy did school, put them to bed, all the big things of the day. I’m so thankful they’re with their daddy during days like this and not some stranger. But I missed them.

    Bye for now.

    Patti

79. Patti said,

    October 25, 2006 at 8:20 pm

    Marla,

    Need some info. Spent an hour phone with the Red Cross today trying to work out direct donation platelets. So one question I have for you – would it be just as effective to use HLA matched platelets or should we leave that as a last resort? It’s really going to be a challenge finding folks who will commit to donating every six weeks. Not to mention it would be an experiment with the first six people just to see if the didn’t cause a reaction. They will charge us $45 per donation. Which honestly is cheap and mom can afford it but think depression area here. She will tell us she’ll live with the reaction before spending $45 a week for platelets! Arrrgghhh. If we have to convince her we will (or we’ll just pay for it) but I need to know which is best and if it matters. We will have to address this with the doc next Thursday so I want my ducks in a row. Thanks.

    patti

80. Administrator said,

    October 26, 2006 at 10:18 am

    Hi Patti!

    None of my directed donors were HLA matched. All were just hit and miss. The ones that worked for me, we called back. Now this is the strange part. . . the ONLY HLA matched platelets I ever got reacted “very” badly with me. I don’t know why. . . My hospital has it’s own blood bank, but when they are short on blood they will resort to the American Red Cross, which is where my first and only HLA matched platelets came from. The reaction I got was with about 50ccs of platelets, then we had to stop infusion. I broke out in hives big time, AND I ended up passing out and they had to put me on oxygen. (Now that is a war story I can tell my grandkids, ha! Embarrassing, but funny in retrospect. I can literally say that I’ve been caught with my pants down. LOL) That was the only time that ever happened to me with a transfusion. I’ve had many of the hives and the tightness in breathing reactions, but NEVER had I passed out until that one HLA matched unit. (Well, I take that back. I did pass out with my very first red cell transfusion, but I think that was because I was also having a fever from infection, but not so when I got the platelets). Go figure. AND that is another reason why I question their techniques. Why many BMTs don’t seem to work? aside from the complexity of it all. . . Are they not matching them right? I have no idea. Something that they’re overlooking? Obviously. There’s a book I read called Surviving Leukemia, a Practical Guide by Dr. Robert Patenaude. It has a list of the HLAs identified in humans. From that list it appears that there are quite a few that researchers are “still” working on for better identification. Just from eyeballing the list, it appears that probably more than half of the identified HLAs are still being worked on. I’m guessing there are over 120 currently identified HLAs on this list, just to give you an idea.

    Hmm. If you can’t find anyone who is willing and able to donate platelets regularly, then the only other choice you would have is to try HLA matched. I suppose that still would be less guess work that just taking random platelets. And I fully understand the difficulty of “testing out” each donor like I did. It just happened to work out for me. My situation was unusual in that I was in between hematologists. My GP was taking care of me, and since he didn’t have experience with this, he took my CBC every day. So I had the unusual chance to monitor how fast platelets dropped for me, and how effective they were just after transfusion, and then also what they looked like the very next day. So I’m imagining you’re MIL is not going to have that luxury. . . For ease and convenience, HLA may be the way to go at this point if she’s really not responding well the random donations.

    All the best!

    Marla

81. Patti said,

    October 26, 2006 at 1:39 pm

    Marla,

    So – when you had your regular donors, did you know them? One thing the red cross said they could do is contact the donors that mom has had that the platelets did work for her and see if they’d be willing to donate on a regular basis. She said the problem with that is sometimes people will agree to but because they don’t have a stake in the person’s life they don’t follow through. So for us, we could pick six people but until we actually used their platelets we wouldn’t know if she’d react. If they didn’t work, we’d have to start all over with finding a replacement. That’s my biggest frustration. Also, mom is getting a good bump out of all of the platelets, even the ones she’s reacting to. It’s just that we thought it was bad to have reactions because that meant the platelets wouldn’t last as long in her body or something. Am I all mixed up on this?

    I got a good laugh out of you being caught with your pants down. How embarrassing!

    Thanks for the helping.

    Patti

82. Administrator said,

    October 26, 2006 at 7:32 pm

    Hi Patti:

    Yes, 5 of my regular donors were personal friends, so I could easily touch bases and coordinate who could go next. The 6th donor happened to be a regular donor at the hospital blood bank before I became a patient. Apparently, her neighbor had a blood disease and that’s how she started donating blood. He died, but she continued to donate platelets monthly. Since she worked so well for me, they asked her if she could donate specifically for me, and she kindly agreed.

    Yeah, it’s a drag to have to test out the platelets, but that’s the only way to be sure. I’m really thankful that I happened to get 6 people who were “able” AND “willing.” When I look back at all the things that fell into place for me to allow me to recover under my terms, I know God had His hand in it. Everything from my hospital having its own blood bank, me finding “6″ regular donors and more donors for red blood, my home set up, my access to computers and being able to find supplies, etc. I don’t know how many people have the luxuries I had access to much less are even willing to put up with what I did. I was able to quit my job and devote all my attention to recovering, others aren’t able or willing.

    As far as reactions reducing the platelets, well I think it does a little, yeah. For me, if I started to “shiver,” then I knew I would end up with zilch platelets. I think the shivering was a sign that my body was rejecting the platelets, period. But if I just broke out in hives, then I “might” be okay with the platelets. More times than not, I didn’t get much of a boost, but I think that had more to do with not being compatible with the platelets. After a while, I did become “sensitive” to 2 of my regular donors where I still got a boost from their platelets, but I was starting to develop hives. . . That sounds like what’s happening to your mom. So when that started to happen, I started to used only the remaining donors of which I didn’t develop hives. The other 2 donors we held off on reserve in case the other ones weren’t available. (People do get sick and also go on vacation, so that’s something to keep in mind, too).

    Hmmm, I think that about covers it? Glad you got a laugh out of my embarrassment! Ha ha! Imagine my surprise waking up to find “male” doctors and nurses picking me up while indecent. . . cripes, where were the female nurses when you need them? I should tell you the details one day, hee, hee. I’ll NEVER forget. . .

    Okay, toodles!

    Marla

83. Patti said,

    October 31, 2006 at 10:51 pm

    Here I sit, one more time. It seems to me that while I’m journaling about mom’s experience with the different aspects of her health care that it is a release for me mentally after these long days.

    Mom called early this morning to say she was ready for platelets. I thought when I saw her yesterday for just seconds that I had seen bleeding in her gums. But, ever in the hurry to get to the store I didn’t stop to ask.

    We saw Dr.Kou first. I am reading a little into his body language and things he said because he’s very careful not to say things in front of mom. He has basically set aside trying to deal with her red cells right now as he feels her platelets are the more critical issue. But he said they are so hard to fix – and then he just shook his head. He changed her formula from low doses of dried herbs to high high doses of fresh herbs. He said that a person can take 5 times the amount of fresh herbs that they can take dried. He kept the rhubarb and jujubee in her formula for platelets but really bumped up the grams in fresh herbs. The other herbs for her whites and reds he kept in the dried form because she seems to be doing okay with those. He expressed concern of even doing moxa treatments today because of her platelets. He did some mild moxa treatments but nothing like he usually does. My general impression of him today was that he feels like he’s done all he can. Not because what he’s doing wouldn’t work eventually, but because we may run out of time before he accomplishes what he needs to. Once again, I will always know that timing was critical and losing that year of flying by the seat of our pants gave this disease a foothold that mom is just struggling to overcome.

    From Dr.Kou we headed straight to the oncologist. Mom’s platelets were at 4000. Last time she started bleeding internally at 3000 so they wanted her to go today. It’s only been 7 days since her last transfusion but with the reaction she had last time she probably lost some of the effectiveness of the platelets. At least that’s my understanding. We discussed the different options of direct donation from donors we find for mom and HLA matched platelets. In the end, mom decided to go with the HLA matched platelets for the time being. She feels like dealing with the direct donation is just too cumbersome. Unfortunately, it takes time to do the HLA matching so she had to get anonymous donor platelets today. To try and prevent the meltdown her body had last time they gave her these heavy duty steroids at the doctors office. Then they had her pre-medicated with the standard tylenol and this time they did IV benadryl. We started the platelets very slow and really watched her carefully. By the end of the bag she had hives again! Man, she was so drugged I don’t know how she could get them! The initial steroids at the doctors office caused her to have restless legs. Then the benadryl knocked her out. They stopped the platelets since we were close to the end and gave her more IV hydrocortisone and another 50mg of IV benadryl. She was so drugged by the end it was incredible. It was after 6:00 before we could leave the clinic because it took an hour for them to get the hives at least slowly disappearing. During the wait time to see how she would do they drew the blood for her HLA matching. They also drew blood to see if she’s developing antibodies to the platelets. This would be called refractory to platelets. I do not think this is what is happening but the doctor thinks it’s the beginning of it and we still have some time to buy ourselves. I guess that blood test will tell. Unfortunately, they drew the first two tubes wrong (wrong color tubes) and had to come back for two more. Mom’s precious blood tranfusion tossed in the bio-hazard container. She was not very happy! At least she got good blood last time and hopefully it’ll still hold out until next tuesday after all this drawing today!

    As we waited to see if the hives would go away we chatted with the nurse. For the first time mom told someone there that she has a daughter. The nurse was shocked. Mom told her “I have to live – for her.” Mom told her she is asking God for just a short while more to be with Marie. I guess I take that to mean that mom has come to some understanding that God does not appear to be leading towards healing in her body here on earth. I found it sad, but also comforting that she wasn’t living in some sort of delusion from Binny Hinn. During that conversation Ron called and let me know Marie was freaking out. It hadn’t occurred to us that the time has changed and it’s dark now at 5:00 here. We have always come home in the daylight. Even at 7:00pm. Ron had to explain the time change to Marie and that we were really no later then usual, it was just getting darker earlier. That seemed to help her until I got home.

    Finally at 6:15 we got up to go. Mom couldn’t walk. Her legs almost came out from under her. She was just too drugged up. So we got her in the van and Ron is spending the night because we really don’t need her collapsing on us. Fortunately, she did not argue one bit with that. I think she was relieved to know she’d have some help getting around.

    When Marie got in the car I told her Ron would be spending the night because mom was having a little difficulty walking from the stuff they gave her today. She started crying. Oy. But what can I expect? It breaks my heart for her because she knows what’s coming and she just doesn’t know how to deal with it right now. Oh – except she did tell Ron the other day that since she’ll be with us and we’re young – she knows we won’t die for awhile so she guesses it’ll be okay. So – apparently she has some understanding and some comfort in knowing she won’t be alone. At least we’ve been able to convey that much to her.

    And so Ron is off with mom again tonight. He and I just feel like it’s a roller coaster one week to the next. I literally walked in the door and kissed him and he walked out to take mom home and stay with her. I left at 8:30 this morning and got home at 7:00 and he saw me 5 minutes this morning and 5 minutes tonight.

    I guess that’s the end of mom stuff. She and I did have some time to kill between the doctors office and her transfusion so we hit the local Wal-mart and Marla, you’d be proud (you too Lori!). I bought a crock pot! It’s a nice 6qt oval and I like it. If I’d only bought it two weeks ago when I considered it I could have had a healthy dinner for everyone tonight. Oh well. Next time. Now we have it and I just have to figure out how to use it. I should have done this so many months ago. Ordering out 2-3 times a week is just not healthy and very expensive. Live and learn.

    That’s it for now. We expect the next transfusion will be next tuesday with HLA matched platelets. The nurses mentioned it can take several days to get the platelets when you do HLA so we are going to have to call “in advance” and let them know. Good grief. Sometimes we don’t know until the night before. She mentioned just ordering them for every tuesday and having them on hand that way. So – we’ll see what to do. This is a whole new thing for us so there will be some learning.

    Patti

84. Andrea said,

    November 1, 2006 at 1:53 pm

    Hi Patti, Thanks for letting us know how it’s going. I was thinking about you.

    Hang in there, Andrea

85. Patti said,

    November 10, 2006 at 11:02 pm

    Been a busy week. I waited until today to post because mom was transfused today. Some interesting developments this week.

    We saw the NP on Tuesday. Mom’s counts necessitated a blood transfusion. Shocked by this because not only did she look really good but she had none of her usual symptoms (heart pain, tired, etc). Her platelets were at 6K. This was a good sign!! That’s the highest they’ve been a week after a platelet transfusion in almost 10 weeks. Due to mom’s high reactivity to the platelets we decided to push the transfusion out until today hoping to get a few more days out of the platelets she had.

    In general, all was fine with mom’s exam. Her HLA typing preliminary was being finished up. They should have the results by now to see if she’s building antibodies to the platelets. But one question that came from Bonnie really offended me. It wasn’t until today that I found out it threw mom too. She asked mom about her quality of life and she was concerned this was dragging on too long. After I picked my chin up off the floor – mom told Bonnie her quality of life was good. She is still doing everything and except for having to go out two days a week she’s fine. When Bonnie got me alone she asked me “how’s YOUR quality of life doing?” I told her that was beside the point. That for the most part mom is doing well. After discussing this the only thing mom and I could figure is that most folks that have what mom does and have been at it for over two years with no form of medical treatment are usually not in such good shape. I know from a forum I’m on that lots of these folks don’t function so well this far into it. So, maybe that’s where Bonnie was coming from. We’re trying to give her the benefit of the doubt but mom said she sure felt like the next words were going to be “I can help you end this!”

    Okay – transfusion day. We did get HLA matched platelets. Mom got 5 small hives at the very end of the bag. Nothing major. Blood transfusion went fine also although the nurse dripped it in way too fast. This was a gal that doesn’t usually work at the clinic. She usually works on the onc. unit at the hospital. We weren’t impressed.

    But the big news of the week is that the change Dr.Kou made in mom’s herbal formula last week is working!! If you recall, I mentioned he started giving mom large doses of fresh herbs for her platelets instead of dried herbs. Even today when she went to get platelets her mouth sores were healing on their own. Granted, she was getting new ones; but she hasn’t been able to heal a mouth sore on her own for weeks. I really think we could have squeezed by without the platelets but it’s Friday and we didn’t want to risk it. Even her gums weren’t bleeding and when mom needs platelets her gums bleed nonstop for hours. So this is a welcome development and we are hopeful that maybe this will be her last bag of platelets for awhile. If we can even keep her at 8K we’ll be happy. That’s where she was for a full year and she was fine. Dr.Kou would like to get her to 10K. He still has herbs in her formula for the red and white cells, he just really loaded it up with platelets herbs also. So – cautiously optimistic that we can skip the platelet transfusions for awhile. We’ll know next week that’s for sure. Dr. Kou said that if this formula is really working for her he will not change it for a long time. In Chinese medicine he said the formula has to be changed often until just the right one is found. Then a person stays on that for a year or more. He hopes he has finally hit the right formula!

    So all in all, a more positive week and it’s nice to have a little less stress.

    Until next time…..

86. Patti said,

    November 18, 2006 at 10:38 pm

    I’ve been computer down for a week and am still “technically” down. I have a new computer sitting at my feet waiting to be opened and started. Still only able to access a small amount of things on this one. Arrrgghh. Life seems to stand still when the computer dies! Maybe that’s a good thing…..

    It’s been a busy week or so and much to cover. Mom’s HLA matched platelets didn’t last her 24hrs. She was getting mouth sores again by Saturday night. We were somewhat confused but since the mouth sores were also going away before new ones came we weren’t quite sure what to do. When tuesday came I decided we’d better CBC “just to make sure.” Well, mom was at 2K. The platelets she got Friday didn’t even give her a bump. So what we hoped Dr.Kou’s new formula was doing in terms of holding her platelets is actually causing her mouth sores to heal (they wouldn’t heal before without platelets). This is very dangerous! It really gives a false sense of security when mom’s mouth sores are just coming and going because they’ve always done that. Even at 8K when she wasn’t getting platelet transfusions. The one thing that does seem to have stayed the same is her gum bleeding. When she needs platelets her gums bleed profusely. She got a unit of platelets Tuesday afternoon. Non-HLA matched (they didn’t have time to match) and she had zero reaction. Go figure.

    However, at the doctor’s office on Tuesday after seeing that the platelets didn’t last mom at all the doctor told mom she felt we had hit a brick wall. Mom is not becoming refractory as she’s not developing antibodies but the doctor wasn’t real encouraging. I told her I wanted to reserve the right to use the drug Amacar as a last resort in the event mom gets to a place where she will no longer hold platelets. My understanding of Amacar is that it won’t increase platelets but it makes the blood “stickier” so a person is less likely to bleed. I also understand it will only work for a few weeks. (?) That’s a question mark because I’m not entirely sure how it all works. Nonetheless, we want to give mom time to say her good-byes and if there’s anything else she feels she needs to do to put things in order, give her that chance. However, WE do not feel like we are anywhere near that point yet. The platelets mom got Tuesday are doing fine and she’s holding them quite well. So we think that it was just an anomoly. Mom did ask me to set up for direct donation in the hopes she can go quite a bit longer with it. We have set up both of her boys, one grandson, two of Ron’s friends and one of mine to donate to her once a week. We also have 5 anonymous donors that worked for her previously that the red cross is going to try and call on in the event that some of ours don’t work for her. So, we’ll see how it all goes. Ron’s older brother did the first donation on Friday for mom to receive them this Tuesday. The biggest problem I’m finding with the direct donation is the doctor has to give the Red Cross a transfusion date before they’ll collect a donation. We have no way of knowing what day mom will need them so we just keep putting Tuesday. I don’t know what happens if she doesn’t get them on Tuesday. What if she needs them Wednesday instead? The goal is to stretch her out as much as possible between transfusions so we’re not sure what’s going to happen. It’s a learning process along the way.

    Ron and I (well, mostly Ron) figured out a way to give Marie her own bedroom and bathroom (mostly) when she comes to live with us. This took a ton of rigging on our part and will require us to pack away all of my sewing stuff, a bookcase full of books, etc. But, we can do it since we’ll be moving eventually. We wanted to tell mom knowing that Marie having a quiet place to go is important to her since Marie isn’t used to a ton of noise. Do you think she was thrilled? No, she was not happy because the room is in our daylight basement. It does get cold down here but during the winter we run the woodstove, which is VERY warm. We told her we’d put a heater in the room and that would be no problem. No, she wants a heater in the bathroom also because she doesn’t want Marie to walk on a cold floor in the morning. Do you see steam coming from my ears right now?????? I just nodded and smiled and told her we could work that out. Ron just laughed and told me we wouldn’t go to that extreme. It’s one thing to keep the bedroom warm at night, but warming the bathroom floors, I’m sorry – we draw the line! Okay, I’m not going to go any further because when it comes to planning for Marie and talking to mom I just get angry. She has made herself Marie’s slave and she doesn’t even think she is. Oh, one more thing. Ron and I finally sat down and went through our expectations for Marie and how we will handle certain situations that we KNOW are going to come up. It was a good talk and I think we can both feel we’ll be unified in our treatment/training of her. Most of the training will fall on my shoulders because I’m the “momma” but he will handle a lot of the discipline issues because he knows really well what works. We’ve also discovered that Marie probably has the same allergies that my household recently found out about just based on symptoms. One of our first orders of business will be cutting out dairy and gluten from her diet. We are in the process of cutting those out of our diet as well as we just discovered I’m allergic to both and my kids are allergic to dairy. We actually think that fixing her diet will make some changes to her personality in terms of the retardedness. We’re guessing just less “fussy.” If that makes sense.

    It was a no fun week this week. I was out 5 out of 7 days. Eeeks! One of those days was for kid’s dentist appts., but still it was another day out.

    Okay – one last thing. A bit of humor (maybe it’s humor). Our oldest daughter had an extra front tooth in her mouth when she lost her baby teeth. They have some name for it but I can’t remember. Anyway, they pulled the tooth and it looked just like a big ” I ” tooth. Then her real tooth came down into place (the other one was blocking it). This happens in approximately 1% of children. Keep that statistic in mind. As Luke jumped into the dentist chair he pulled me over to the x-ray machine and showed me that Luke ALSO has an extra tooth! Unforunately, his is growing up into the gum/palate area so his will require full out surgery. We’re going to wait six months and see if the actual adult tooth will come down without the surgery. If it does, we can wait a couple of years before going in for the other one. If it doesn’t it means the false tooth is blocking the real one and he’ll have surgery in June. How on earth did I get TWO kids with this 1% chance????? We really did laugh because it just struck us as funny in a sick sense. Well, and in my house the joke is that every bad gene my kids have came from my side of the family and I have to tell you, so far that’s been true! I have a brother that had a full 3rd set of teeth on the bottom of his mouth so we figure our kids got that somehow. Alright, I’m done rambling.

    Until next time……

87. Andrea said,

    November 19, 2006 at 1:35 pm

    Hm, maybe you could somehow route the steam from your ears down to that daylight basement, save on wood . . . Pretty amazing about those teeth! My grandfather had 4 kidneys–how likely do ya suppose that is? As far as we know, no one else inherited this oddity. Take care, Andrea

88. Administrator said,

    November 19, 2006 at 4:21 pm

    Ha ha! Only problem, Andrea, is I think steam “rises.” Patti will have to try to coax Ron in to blowing into her ears! LOL

    Thanks for the update, Patti. See, your experience with the HLA makes me wonder. As you may recall my one and only HLA bag and the reaction I got. . . I think it’s a good idea that you get people to come in to try out their platelets. That’s what I did, and it worked out. I hope your MIL got a good boost from her latest platelet transfusion especially since she got no reaction from it (I’m assuming you mean allergic in the way of hives). That one should be easy to track down and hopefully it belonged to a “regular” donor who would be willing to do it regularly for your MIL.

    The teeth struck me, too! There’s this book my son has regarding these remains of “giants” that were found and they had two rows of teeth! I’ll have to find that book and get the details. The four kidneys is another amazing story! Was your grandfather’s health exceptional is any way? Do they know if they were fully formed and fully functioning? Once I was reading up on the history of transplants, and one of the things they mentioned was that sometimes “large” people have “two” hearts. They call it a piggy-back heart, I think.

    Okay, toodles!

    Marla

89. Patti said,

    November 19, 2006 at 5:41 pm

    Oh my gosh! You two actually made me laugh. Marla, I got enough air between my ears, don’t need no more! I guess I only mentioned it just to vent. I’m done venting now.

    Marla, mom’s platelets seem to have held pretty well until Friday. So, three days. That’s just the day she started getting mouth sores again. It’s two days earlier then we expect based on passed experience but the one thing I’m learning is that the only constant with this disease is change.

    Okay – gotta run. My son is being baptized tonight and it’s a family affair. Lots of unsaved family coming. Chat with you later.

    patti

    p.s. oh! Andrea, way weird having 4 kidneys!! Did they remove any of them?

90. Andrea said,

    November 20, 2006 at 8:38 am

    Blessings on your son, Patti . . .. my grandfather was 90 when they discovered the extra kidneys, so they let them be. He was in excellent health until he died very suddenly at 93, but at 90 he did have some bladder issues that caused them to do some kind of scan and that’s when it was discovered. Good question as to whether they were fully formed, and functioning–I don’t know.

    My aunt’s only comment was–”this explains why he was such a successful alcoholic.” He was an extremely heavy drinker–always waited till after 5pm, but really hit it after that–with seemingly no health effects whatsoever, and she theorized it was all those kidneys!

    Two hearts! Two rows of teeth! That’s wild. Here’s another one for you–when I was 16 my periods stopped and my lower belly began to grow. It wasn’t what you think, though the MD thought so, and didn’t believe me when I said I was a virgin. They did an x-ray and it was an ovarian cyst, a kind that had both teeth and hair in it. An ovum tried to grow a baby on its own. Runs in the family though PTL neither of my daughters got one (they happen in adolescence).

    They could tell from the xray it was a cyst–because of the teeth!

    Andrea

91. patti said,

    November 25, 2006 at 10:11 pm

    Andrea,

    Oh my goodness! I can just see a parent freaking out at that. I have never heard of that. Wild. I can see how the kidneys might have “helped” your grandfather be able to get away with drinking so much. Since they didn’t catch it until late in life, it must not have caused any issues along the way, which I also find interesting. Lots of cool stuff to read up on though.

    My sons baptism went well and he actually went under. I think I was more nervous then he was. He did do what his sister did and that was put his feet in the air when his head went under. The laughter that insued was very sweet. He was pretty excited when he was done. Sunday morning when I asked Luke if he was nervous about going under water he told me “no.” He said, “if pastor drops me the Lord will pick me up.” My son has sooooo much faith it blows me away sometimes. There was a Japanese guy that got baptised. First saved in his family/friends. He had 40 guests there! Our pastor gave a fantastic, simple plan of salvation for all those folks. My parents were also there. Can’t say they responded much to the message but they at least heard the gospel in full. It almost seems like they just shut their minds off when the preaching starts. I know I’m not in their heads but it does seem like it.

    As for mom news, she received platelets from her oldest boy last week and they have held well. Her second directed donor donated today for her to receive them on this Tuesday. I’m glad we went this route and regret that I didn’t listen to you sooner, Marla!

    I’m having serious caregiver meltdown this past two days. I was doing fine until Thanksgiving. We went to Ron’s brother’s house and every question his wife asked me I just couldn’t believe it. They literally have no clue what we are going through here. I mean nada, nunca, none. It was all I could do to keep from bawling my eyes out there. When we got home I just let loose. My husband is so gracious. He just let me cry and reassured me that God knows how hard this is for me and he also thanked me for doing so much for his mom. But I haven’t been able to put down the tears since Thursday and it’s really annoying! I can’t even blame it on hormones and I would rather have something to blame it on other then caregiver stress! I’m thinking that being out one day a week for 8 or 9 hours with mom is one thing; but for some reason throw in that extra day every two weeks for a full day of transfusions (another 8 hour day) and it just does me in. It takes me two days to recover from the emotional exhaustion as well as the physical. Partly because I don’t sleep well for a few days and then try to make up for it two days later. Partly because on those days I’m trying to “recover” I’m also trying to keep school going (which isn’t going so well right now) and it’s just hard. I’m so thankful my kids are little brainiacs because I know they’re still learning from all the reading they’re doing when I’m not able to go through all their lessons. I’m trying to focus on the reading, math and bible right now and if nothing else gets done, at least the important stuff does. But, God, please takes these tears away!! Not sure why this has hit me all of a sudden again. All I can figure is while I’ve been irritated with my BIL and SIL before, I’ve never really had such a full out anger towards them. Somewhere in this, God has a lesson for me. Forgiveness, maybe???

    One thing I have found in this past two years is that God has grown my husband and myself so much that I’m not sure he could have done that without us being mom’s main caregivers. To everything there is a reason and a time for every purpose under heaven….. (Eccles. 14).

    Signing off……..

92. patti said,

    November 25, 2006 at 10:17 pm

    Oh my! I did forget a major milestone that we hit last week. How could I?

    Dr.Kou’s goal has been to get mom’s HGB to hit 8 when she’s at her lowest point. So that no matter how low her HCT goes, her HGB will not go below 8. He thought it would take one year to get there. We’ve been seeing him for 8 months and last week mom hit 8! Her HCT was only 24 but she was holding at 8. She had been at 7.6 for a long time and just couldn’t get over that hump to 8 but now she did! So that was very exciting. It’s been interesting to see that so far everything Dr.Kou told us has come true. We transfused only because her HCT was so low. He told us he didn’t want her HCT to go too low so went went ahead with a RBC tx day before turkey day.

    Okay, that’s it now. Can’t believe I left that out!

    patti

93. Andrea said,

    November 26, 2006 at 12:35 pm

    Wow Patti, great news about the HGB. That’s wonderful.

    As to caregiver stress–it’s really something, isn’t it? The level of emotional and physical exhaustion you can feel is indescribable. It is my belief that tears are God’s way of providing us with release and healing. Even Jesus wept. And there’s that story about burned-out, depressed Elijah in the desert.

    When you need family support, family cluelessness–and were they confronting as well? I hope not, but I fear so– is indeed heartbreaking. Jesus experienced this too when all his clueless disciples fell asleep, when Peter denied him! So your husband is right, Jesus does understand. He’s been there.

    THat’s wonderful story about your son, and thank you for sharing it.

    A year ago today I was in the hospital with Rob, who had just had a grand mal seizure as a result of a subdural hematoma. He was so weak he could hardly walk.. They were talking brain surgery and were pretty negative about his possibilities in general.

    So I am so grateful that that’s not where I am today.

    Hang in there Patti, Andrea

94. patti said,

    November 27, 2006 at 10:45 pm

    Andrea,

    Thanks for your words of kindness. It all looks so different when we put things in the context of God’s Word. I really fail to do that when I’m feeling so down.

    How is Rob’s healing with the AA going? I always assumed (I know, bad) that you guys were doing something similar to what Marla did? Yes? No? When was he dx? I thought a year ago from some things you said? Has he seen any changes with the treatment you’ve been pursuing for him?

    How’s your friend from church? I’ve prayed for her and was wondering. Has she had any success with treatment?

    All the best,

    patti

95. Administrator said,

    November 28, 2006 at 5:04 pm

    I agree with Patti, that was very nice, Andrea! It’s so nice to be reminded that we aren’t alone. I think I’ve heard somewhere that tears actually DO carry toxins. Isn’t that something? It’s another way out. There really is a reason for everything, I think.

    I really admire you two for being such good caregivers. I have not had to assume that role so far. There were a few times when my dad was in really bad shape, but I was not his primary caregiver. It was painful enough just being there during “some” of the hard times for him, but I can’t imagine what you ladies go through. I’ve seen the things that Brian has done for me and his grandmother when I was sick. And it truly has humbled me. I can also relate to the “clueless” thing. Sometimes you can really see that some people just haven’t been there. It’s hard to explain, but I’ve seen it. AND I remember being clueless myself in the past! Shame on me. . .

    Patti, I’m so glad to hear about your MIL’s progress. I am just so amazed. Brian has enrolled in an herbal course and has been teaching me a little along the way. I’m starting to understand a little more about herbs and diet in light of the yin and yang thing as well as how they are involved with Ayurveda. Very interesting! Not only is “what” we eat something we should consider, but also whether it’s cooked or not. Apparently, it depends upon our current health condition. According to the course that Brian is taking, they do say that diet is not as quick acting as herbs are, but diet is more complete and long lasting. I hope they’re right! Maybe some time we can compare notes. I know that Dr. Kou took you out to teach you about food at one time. It’s really interesting to see the philosophy behind it.

    Thank God, Andrea, that Rob came through it all right and didn’t have to go through surgery! That is just so awesome! When I was first diagnosed with AA, one of my uncles came to the hospital to visit me and was telling me how I’d be alright. Then a few months later he ended up in the hospital due to some sort of brain hemorrhage. They operated on him, but he didn’t make it. It was so sad and so surreal that that happened to him. It so hard to know what to do sometimes. I wonder if it was at all possible that my uncle could have survived without the surgery. I was afraid to ask my aunt any details, tho. How did Rob know that something was wrong? Did this happen while he was hospitalized? Do they know what caused it? I know that my aunt said that my uncle came home with a headache and it just started to get really bad, so they went to ER. I don’t think he had any other health problems, either. Maybe his case was just unavoidable? There was another guy I worked with who also had a similar thing happen, but much faster. He got a headache at work and went home. They said he had an aneuyrism that night and died. You and Rob were blessed to have been able to come through it. Thank God!

    Oh, my gosh about the teeth and hair thing! My sister-in-law is an OBGYN, and she had actually told us about that condition! Years ago we had visited her and she had these video tapes lying about. They were of surgeries, and I asked if I could watch one. I think one of the cases was like yours. Very strange! And then another time I watched a movie of a kid who had a brain tumor recurrance, and the type of tumor had those teeth and hair in it, too, but it was in his head. They were actually happy that that was the kind of tumor cuz that was benign and could be removed.

    Okay, better scoot for now!

    Marla

96. patti said,

    November 28, 2006 at 11:33 pm

    I think I’m going to stop starting these notes with “another long day.” What day out isn’t a long day? It’s getting boring writing that! LOL

    So I’ll skip that intro tonight and go right to work. It was snowing here today ever so slightly so it was a nice change. I don’t mind driving in snow (it’s an Idaho thing – yes, I live in Oregon) and it was very little. But I gotta say, Oregon drivers DO NOT know how to drive in snow. Mom’s platelets were at 6000 today. The platelets David gave her last week were really really good! “Normal” by now would have been 2000. They also informed us at the doctors office that we no longer need to go in for a CBC each week to get platelets. Yippee! That literally cuts out 3 hours from the days I have to be out. That’s huge. I don’t know why they had us doing that all this time. Maybe because she wasn’t getting them weekly at that time and now they just know she’ll need them. I don’t know but we’ll take it. Her new doctor is 1 hour 15 minutes from home so that drive time makes a big difference. We’ll be in Portland anyway for other appts. but it’s nice not to have to go further.

    Her second directed donor wasn’t able to give a very big bag of platelets but she still did well with them. She got one hive when she got home and two others that were trying to start. Need to know if we need to not use this donor, Marla or if that mild reaction is okay? The reaction did cause us to have to give her another 25mg of benadryl. She could hardly walk by the time Ron took her home. The benadryl makes her very very sleepy and she had already had IV benadryl before the platelets. Besides all of the running around today which made her tired also.

    I had an appt. with the naturapath today and we ended up having a good conversation about what’s going on with mom. It was very interesting to get her take on things without mom in the room. She asked for my impression for how mom is doing. My general feeling is she’s very very tired but hanging on. I told the ND I was stunned that mom cannot walk for more then 10 minutes without sitting down for an hour. That happened twice in the last two weeks at stores. Before mom got sick she could shop for hours. I haven’t shopped with her in awhile and was so surprised that she was too tired to walk. The following comments are all from the ND. She said one of the things she’s trained to do is read how patients are doing from watching/observing them. The reason for that is because much of natural medicine has to do with a person’s constitution. She said mom has not been feeling well for a very long time but she puts up a good front. She said I was just seeing it because when mom’s in her own environment she can compensate very well. She’s knows right where all the chairs are, how far she can go, etc. But when I got her in an unfamiliar environment she couldn’t compensate her way out it. She had to give in.

    The ND is really pushing me to talk to the docs and find out what their opinion is of continuing transfusions. She also wants me to be very clear that mom has called the shots for now and we will let them know when she’s done with the supportive care. My assignment this week was to get the hospice stuff taken care of! I was going to do it awhile ago but then backed off. However, this week the Lord has been pushing me to make some phone calls. And, after seeing Reuter today I obviously need to. If for no other reason to have all the info I need to make decisions in the future. She also said it’s time that we have a conversation with mom about how much palliative care she wants. I flat out told her I cannot have that talk with her! She said it’s up to the boys to do it. Yeah, that will be interesting. I think David would actually do better with that because he’s somewhat distanced from the situation (by his own choice). I did talk to Ron tonight and he’ll “see about it.” I guess the point is to have clarity for what she wants.

    Reuter also told me that when mom stops her care (transfusions, neupogen) that I need to take that two weeks and really look at what she and I have been through this past two years and spend a lot of time saying good-bye to her. As Reuter put it, “you’re going to spin your wheels for a few months trying to put life back together.” Interesting. But something Ron and I have talked about. And something my mom warned me about after having cared for my grandma for a long time. It’s not just going out to appts. It’s daily concern, researching, ordering stuff (supplements in our case), changing picc dressings, etc. etc. etc. The list goes on. But just because she’s in her own home doesn’t mean I don’t take it all home with me. Which is so true! I have determined that ALL of my sleep problems are the result of not being able to shut my mind down from mom. IF I send her home and I know she doesn’t feel well, I wonder about her all night. I do pray for her but I still also wonder. Just lots of stuff like that.

    So some interesting stuff today. Not necessarily medical but end of life stuff that is no fun to talk about but has to be. I look forward to my chat with Bonnie (the NP) tomorrow as to her comments to mom that we find totally inappropriate. Reuter said the bottom line with those comments is these folks don’t know what to do with mom because she has survived at least a year with leukemia which they’ve never seen anyone do. They don’t want to know how she did it, they just want her to go away because her very presence challenges everything they believe about medicine. It’s that God syndrome again.

    Okay – Marla, I heard tears actually carry excess hormones out of our bodies which is why women tend to be more tearful around their cycle. Hmmmm. Either way, toxins or excess hormones, I good cry sometimes seems to clear things out.

    Way cool about Brian’s classes on herbals. There is a self study course by Shonda Parker (think that’s her last name) that I would LOVE to take some day. She’s a christian lady and it’s all done from God’s perspective of what He’s put on earth for our healing. She stays away from the yin/yang stuff because of it’s spiritual tendencies. I have a friend taking it. It’s spendy but someday would be worth it for me.

    The cooked or not cooked thing is very important. There are some foods definately better cooked or at least steamed (like veggies) from the nutritional standpoint. The body has to be able to use what one eats and our digestive systems are usually so damaged from the SAD diet that they can’t handle raw foods. My big one is salads. They kill my insides. It can literally take a day and a half for me to digest a salad. It’s awful. I think I would be better stir frying the lettuce a little in peanut oil or olive oil and then adding my other stuff to that until it’s just soft enough. Hmmmm. I might try that this week.

    With mom being sick Dr.Kou wants ALL of her food well cooked because hard to digest foods can cause bleeding. For that matter, she’s not even allowed to take pills or capsules right now. She has to empty everything into applesauce to take them. Oh, we really enjoyed eating out with Dr.Kou! I wish we could have a refresher course with him because it’s so easy to forget this stuff!

    He’s big on meats for blood. Lots of rice noodles (no other kind of noodles though), plain white rice (yick), celery (lots and lots and lots of celery – cooked/steamed), mushrooms are a biggie. He’s not big on carrots and corn which is interesting because they’re both starches (and I can’t have either). Bamboo is another one he says is good. Just interesting stuff. That’s just a little bit of what I remembered. He pretty much said to stir fry everything. In terms of health, he said it’s the best way. That’s all I can remember right now.

    Very cool. Well, if there’s anything Brian teaches you that we should know, do tell us!!

    Better run.

    patti

97. Andrea said,

    November 29, 2006 at 10:02 am

    Hi ladies–Thanks for your kind words about Rob’s progress. In answer to your questions–in late October ‘05, Rob took a bad fall and hit his head. The next day he was in the hospital with practically no platelets and so little hgb he couldn’t sit up without fainting. That’s when they did the ATG (”while we have you hostage” the doc said–Rob was resistant to this course of treatment) but they did not do a CAT scan, even though his head was clearly bruised.

    Anyway, that’s when he probably got the hematoma, but we didn’t know it. A month later, he had a grandmal seizure while playing the piano (he first noticed that his left hand wasn’t hitting the notes as well as usual), and a CAT showed the hematoma. It is usual for a seizure or other reaction not to happen for about a month after the injury–something about the way it reabsorbs.

    The usual course in such a situation is to do surgery, but the surgeon was reluctant because of Rob’s low whites (1.5 at the time, and about 70% lymphocytes). So we did weekly, and then biweekly CATs, and by God (literally) that sucker shrunk on its own and disappeared.

    It did leave me wondering–how wise is it to schedule this surgery so routinely, if the body IS capable of reabsorbing? This would apply possibly to your uncle’s situation. And to my father-in-law’s–he died, about a year before, after two surgeries for a subdural hematoma.

    I don’t know the answers to these questions. But here’s fact–Rob had a sizable hematoma (about 4cm in diameter), and it went away by itself in 4 months, and his platelets (with transfusions) never got above 70K. So, it can happen.

    Marla, that herbal course Brian is taking sounds way interesting. Patti, I read that Yin and Yang are the equivalent of Earth and Heaven, only they mean the invisible energies connected with these two elements of Creation. This helps me connect Eastern thought with my Christian faith.

    Yes, Rob was interested in alternatives from the beginning. He followed the way he felt he was led by prayer, and ended up with a Chinese doctor and and acupuncturist. I have been a proponent of macrobiotics, which is based on Oriental medicine, so he has ended up eating a modified macro diet (including some meat, especially lamb). He gets acupuncture 1x/week, acupressure 1/x month, and does healing Qi Gong (exercises) 5x/week.

    Our spiritual life has undergone a huge change, and I think that has really made the biggest difference. We meditate/pray together for 20″ every morning. Rob spend another hour after that studying spiritual writings. He’s started coming to church most Sundays. He has more faith. He used to work too hard, and the root cause of this overwork was a sense that, if he didn’t really push hard every day, he and his family would not be taken care of.

    It was the overwork I think, more than anything, that triggered his illness. And it’s the faith I think, more than anything, that is healing it.

    My, I do ramble on. My lovely church lady is much better!! She’s got some pink in her cheeks now. Her ND has altered he medications some, and I think that plus prayer is really helping. Thank you so much for your concern.

    Patti, sounds like you’ve got a gem in Reuter, helping you with the Big Picture, and helping you care for yourself. Death is a wonderful homecoming, I do know that. Often we are called by illness to heal and learn (as in the case with Rob and Marla–God has plans for them), often we are called by illness to come Home. When your MIL is called home, she will still be able to be there for Marie, in a different and more powerful way. I believe this because it happened with my father.

    Take care ya’ll,

    Andrea

98. Administrator said,

    November 30, 2006 at 4:50 pm

    That’s great news, Andrea, that your friend at church is doing better. Also thanks for explaining what happened to Rob. Was Rob diagnosed with AA before his fall or was it during that hospitalization that they found that he had AA? Man, 4cm! I had to take out my tape measure to make sure that was the size I was thinking! That’s definitely good to know that something that size can re-absorb on it’s own. I’m so glad when others share their stories cuz it really helps when trying to decide what to do, you know? That’s definitely a story to spread around.

    Patti, yes, I can imagine that all the worry would disturb your sleep. Remember when we touched bases online when I was up worried about my dad and you were up worried, too, probably from your MIL? Was it around 3AM? Ha! It was actually nice to bump into you during that early hour when I just could NOT sleep for worry over my dad. At least I felt like someone was “listening” to me bang on my computer keys. I still could remember crying while typing, so yeah, although I can’t possibly know exactly how you feel, I do know how the tears come uncontrollably. I’ll pray for you, for comfort and guidance.

    Regarding your MIL getting exhausted after 10 minutes, I remember being that way, too. For me it was due to low hgb. In the beginning I tried to walk to all my appointments from the parking lot thinking that it’s not that far, but when my hgb started dropping, I couldn’t even make it from the car to the Procedure Center. I could “barely” make it inside the door of the building. It got to the point that my sister would have me wait and then come out with a wheel chair. It was very discouraging as I really resisted getting a wheel chair. Then someone suggested that I get a handicap parking card too and that’s where I drew the line. I thought, “Oh, no! I can’t be that bad!” But when my hgb got low, yeah, I was that bad. My heart would be pounding so hard, and I could “hear” the pounding in my head. My legs would cramp up (not to mention I could barely stand up straight as your body feels so heavy, I would hunch over), and even my jaws would cramp up while chewing food when my hgb got too low. I would have to “hold” my jaws while eating. After I learned where my low was, I made sure to get my transfusions just before I started to get that bad. You learn after a while, and when you feel your hgb running low, then you really start to slow down and conserving energy–i.e. move more slowly, get up slowly, take a deep breath before getting up, etc. After reading your post on your MIL all that memory came back to me. While I was out today, I had so much energy rushing back and forth from the car to store to store looking for stuff. I had a bounce in my stride that 7 years ago was just not there.

    Regarding the herbal thing, I’ll try to look up that lady and see what her course looks like. So far, the yin/yang thing hasn’t gotten very religious at all. Brian says the Ayruveda one seems to get more religious than the Chinese herbal one. It describes it more in the line of balance. Supposedly everyone has both yin and yang, and when you’re healthy, they are balanced. The way it started to make more sense to me is in that it described yin as being cold and yang as being hot. The cold slows down metabolism, while the hot speeds up metabolism. (course it’s more complicated in that it also describes hollow organs and solid organs, but it starts to make more sense to me. Certain diseases are thought to be more yin, while other diseases are thought to be more yang). Apparently, certain foods and herb are heating or cooling, so depending upon whether you’re leaning too much to one end, then you have to eat and do things that bring you back to balance. And as you and Andrea already know, if you have a weak constitution or weak digestion, cooked foods are better for you (according to their philosophy) than raw. Andrea, that’s probably why macrobiotics seems to help so many cancer patients? Just a guess, and I’ll have to mull that one over more in my mind, too, since you’ve got all those raw foodists who claim cancer cures, too. Hmmm. Anyway, the cooking thing also seems to be consistent with fermenting foods, which in essence is predigesting the foods, right? Some claim fermented foods are essential to good health (although I can’t seem to eat it right now without breaking out!) Hmm. I haven’t noticed having problems with salads, although early on when I ate tons of it, every once in a while, I’d see some of it come out from the other end! Ha ha! Obviously, it didnt’ get fully digested! Sorry if that was too much information! Ha!

    Okay, I’d better dash for now. I’ll be praying for you regarding your discussion with your MIL. All the best! And happy holiday shopping!

    Marla

99. Andrea said,

    December 1, 2006 at 5:41 pm

    Hi, Rob had already been diagnosed with AA. They wanted him to do the ATG, but he was reluctant. His diagnosis was Sept. 23–we’d seen a naturopath, who really didn’t know what to do, Rob was getting transfusions, then in late October I think his reds must have dropped really fast, because he got out of the tub and passed out and took the bad fall. That’s when he must have gotten the hematoma. The next day he started running a high fever so I took him in. He was in pretty rough shape at that point. Kept fainting.

    He had really bad hemorhhoids too and was in tremendous, constant pain from them. Finally the nurse–who was a gem–called the doctor and asked for some morphine, which he got, and he finally got some relief.

    Anyway, what with the fever (they put him on 3 or 4 antibiotics–they did a culture but never found anything), he was in for awhile, and they really did a high pressure thing for ATG–the doctor, the chaplain, the social worker. So he did it. But kept researching and doing alternatives as well.

    I don’t know what’s going on with the raw-cooked controversy. I do know that our digestive systems can’t break down the cellulose in cell walls like cows can with all their stomachs. So I don’t understand why raw would be better. On the other hand, doesn’t heat destroy enzymes? Hard to wrap the mind around this one.

    Fermented foods have yeast in them, right? Could you still be harboring some of the beasties? Have you considered another blast of olive leaf–Blaylock claims it’s quite effective.

    Well I gotta bounce, as my daughter says. Church fair tomorrow. TTFN, Andrea

100. Administrator said,

     December 3, 2006 at 2:37 pm

     Thanks, Andrea, for answering my questions. Morphine is something else, isn’t it? I got some, too, when I had my BMB. It’s sure fast acting. I still felt pain, but my nerves were so much better. I was very tense during that whole hospital admission, but after they have me the morphine I felt like everything was going to be alright. I remember thinking “No wonder people get hooked on this stuff, it really can make you feel like everything’s alright.”

     Interesting how there are those cases where there’s fever but no infection can be found, huh? I’ve read of several stories like that, and I think John also had tests done for infection when he was battling Sweet’s, but they couldn’t find anything. Just goes to show how much the medical community still doesn’t know.

     You’re right about our lack of ability to digest cellulose. Animals like cows have 4 chambers in their stomachs to digest that kind of stuff and as I understand it, each chamber has a different function. We don’t have that. Horse digestion is another interesting one. Apparently it’s their colon which does a lot of digesting. It’s pretty massive as I understand it. The big deal that raw foodists rave about is that enzymes are destroyed in cooking as well as some vitamins. I have found some conflicting information on that, one being the idea that vit C is destroyed in cooking. I’ve read that what cooking does to vit C in veggies is it releases it from the veggie, and the Vit C ends up in the cooking water. So yeah, the cooking removes the vit C in the veggie, but if you drink the water, you should still get some. I don’t know how to verify that info, but I found it interesting and makes some sense when you read some survival books. One book I read mentioned that if you got lost in the wilderness, all pine needles are high in Vit C and just to make some tea out of the needles to get your vit C. Well, obviously in that cooking they still seem to get the vit C. But then some people say that vit C is destroyed in light. Hmmm. How to test that one? I tend to think that both raw and cooked have their benefits all depending upon your current state of health. The one thing I find interesting with the Chinese herbal medicine is that they take the whole body into consideration so that even if you have a similar symptom to another person, they still think the cause could be different. For instance fever could be caused by different things. They believe that if your fever is caused by a yin (cooling) condition, then giving a cooling remedy could actually be detrimental to the patient and push them further into a yin condition. While some fevers could be caused by a yang (hot) condition and giving the same treatment for a yin condition also might prove harmful because again you swing to far to the other side. Echinacea is one of those herbs used as an example. They say it’s a cooling herb, and for strict vegetarians who tend to run cool, Echinacea loses it’s potency and can actually exacerabate their cool constitution. There is a believe that cancers for people in the western world tend to be caused by a yang (hot) condition thus that may be why in the west, cuting down on meat has been seen to help. Supposedly, people who live in colder climates tend to need more heating foods like various meats.

     As far as the enzymes, William Kelley’s work on cancers revolved largely around getting enough pancreatic enzymes, so maybe that’s why lots of raw foods help with some cancers?

     I’m not sure what’s up with fermented foods and me breaking out. Actually one thing I seem to be able to eat okay are olives, which are pickled. It has been a long time since I’ve done the olive leaf extract. Just might try that again. Good thought there. One thing I have read is that the longer one uses cortisones, the longer it takes to heal. Supposedly the drugs drive the condition deeper and thus takes longer to come out. I am seeing improvements, so hopefully there’s some truth in that. I took cortisones since I was a toddler. I often wonder if my eczema was allowed to run it’s course or was treated more naturally in the beginning if it would not have gotten so deeply rooted. Some people think that eczema is genetic or hereditary, but none of my sisters or either parent has it. AND none of my three boys have it. So that leads me to think there is a weakness within me.

     I have done several parasite cleanses, and perhaps I should just continue to do them periodically for good measure. I likely still have candida overgrowth issues as well as the leaky gut thing that supposedly accompanies that condition. But I have experienced much improvements. I’m actually still sleeping very well! There are nights when I don’t even wake up to go the the bathroom! Ha! Now, that’s definitely a change! Another thing I’ve noticed more recently is that I’m dreaming a LOT. Not sure why, but I have read that dreaming is a good sign that mental health is well and that B6 levels are good.

     Now, this has gotten long, and this section is supposed to be for Patti’s MIL! Yikes! So I’ll sign out for now. Have a great day!

     Marla

101. patti said,

     December 4, 2006 at 12:19 am

     Ladies,

     I just typed a whole note and lost the darn thing to my stupidity. I’ll have to write it all again later!

     Please pray for my family this week. I will be out tues and weds. for 8 hrs both days and Thurs. for a few hours to meet with hospice for the first time. While that’s going on we’ve got trees getting trimmed tomorrow so a new roof can go on our house Tues. and Weds. while I’m gone. It’s a week full for both Ron and I! If you would pray especially for my kids I would appreciate it. I found a note my oldest daughter had slipped between some fabric of a dress I have been making for her. It said, “I love you mommy. I wish you could stay home.” I bawled my eyes out. It makes me cry to even write it. My kids are just really struggling right now and I don’t know what else to do to help them. Pray for God’s peace for them, please.

     Okay – I’ll have to rewrite my health/food comments later.

     patti

102. Andrea said,

     December 5, 2006 at 5:52 pm

     Hey Patti, will definitely pray for you all. Hang in there, Andrea

103. patti said,

     December 5, 2006 at 10:59 pm

     Alright, I have no business being up and typing right now but I am….. Marla, I missed you at 2:00am last night! I *guess* I’m glad you’re sleeping better though! Me? I went to sleep at 6:00am, woke up at 6:15 dreaming that mom’s doctor just told me I had breast cancer in both breasts. Fell back asleep until 6:30 when the alarm went off to start my day. Oy….. I’m so tired but I feel like I need to unwind.

     Dr. Reuter talked about giving me some homeopathic “knock out” drops so I could sleep on nights when I can’t shut my brain off. I think I’m going to have to take her up on that. At least temporarily.

     So, the health stuff that I deleted last night… I am sure it will be much much shorter tonight! Marla, you are right about the hot/cold thing with chinese medicine. Reuter likes to say I’m hot so she gives me all of these herbs that are “cold” inducing and also herbs to heal “dampness” (meaning yeast mostly). So far everything Brian’s told you is right on with what Kou has told us. I think that after all of the reading and such we’ve done I’ve come to a couple of conclusions about the whole raw food/cooked food argument. I think if one is juicing that the raw foods are fine. If not, I think the veggies should be lightly steamed/stir fried so the enzymes and vitamins can be made more bioavailable. I just don’t think there is a pat answer to that whole controversy. But that’s what I’ve decided is the best way to go for us. My system CANNOT handle raw foods. Marla, I wrote to you about what that does to me. But give me steamed veggies and I do just fine plus still get the fiber benefits, etc.

     Andrea, thanks for sharing about Rob. I totally agree with you about the hematoma. There is someone on one of the forums that had one and they couldn’t do surgery and they did the same thing. The body reabsorbed it. It wasn’t easy and they had to watch carefully but to me, that is so much better then to invasively cut someone open. It just makes more sense to do a watch and wait. But I think docs are just quick to practice their medicine on whomever will let them do it blindly. I pray Rob finds the same healing that Marla did! Thanks for letting me know about your church friend. I had been praying for her.

     Well Marla, I’m finding all of this health stuff is so related to life for everyone that I think mom will forgive us for butting into her health blog info. This info is worth it for anyone who needs to heal their body so whatever we can put out there is worth it. Related to mom’s MDS or not. And you’re such a walking book that I’d hate to miss out on what you have to share!

     Okay, so this was much shorter then last nights. What does that say about everything I wrote last night? Long winded? hee hee.

     Mom’s appts. went well today. Her platelets were at 6000 and she still had almost no bleeding from the platelets she got last week. What a blessing!!! We received a call on Saturday that our planned donor for today was unable to give because he didn’t have enough platelets so they called my husband late saturday and told him he had to donate at 6:30 Sunday morning if mom was going to get platelets today. My hubby gave mom a good bag and she got every last drop of them today. They’ve taken to using a syringe and pulling the last bit out of the line (the ones that won’t go in by gravity feed) and injecting them into her picc line. This is so nice because we hate to throw even that little bit away!! Hoping she’ll get as good a bump from these as she did from her oldest son and our Indian friend. Oh – cute side note. Our indian friend was so concerned that his platelets work for mom. So we called him and told him he did great and she did really well with them. And she’s only speaking with a slight indian accent now! It took him a second and he got a good laugh out of that. Ron says after today mom ought to want to cut metal and drive a motorhome!

     Her red counts looked really good today. We can hold off on a RBC tranfusion until next week! She hasn’t been able to go 3 weeks in quite awhile so that was a nice surprise. Boy, mom looked good today. After Dr. Kou did the moxa treatments she was just rosy rosy red. That stuff really get her blood moving and circulating well. For those who don’t know, moxa is some sort of chinese herbal stick that he burns over certain points on mom’s body to help her blood flow better and also her spleen/digestive system to produce more blood cells. Sounds wild but it works everytime to get her moving. The points he uses are a spot on the inside and outside of both knees/legs, the big toe where the skin meets the nail in the corner and her stomach about 1″ above the belly button. Most moxa smells like marijuana but the stuff he uses has some sort of stuff in it that makes it so it won’t smell like that. He holds it over the skin for a minute or two and then rubs the heat into the point he’s at. He’ll do this until it just gets too hot for mom to handle. Usually about a 1/2 hr for all of the spots total. He can’t do acupuncture anymore because of her platelets so this is a way to still use the same points (similar to acupressure).

     Dr.Kou was thrilled to find out that mom’s HGB had hit 8 as her new low! I thought he was going to dance around the room he was so happy. His wife was too! She speaks terrible English but she was so excited she was talking a million miles and hour and we had a very difficult time understanding her! But it was neat to see them so excited. Wish we could say the same for mom’s platelets. Dr. Kou does not feel like he can fix mom’s platelets before her body gives out. He’s trying, but he says he’s really running a race against time that he doesn’t have. He needs about two years to fix just her platelets. Oh well, we’ll take what we can get for now. I think the improvement in her red cells is enough to say this stuff works! Nothing medically they are doing was able to bring her HGB up. But this stuff did!

     As for our week, things suddenly slowed way down! Must be those prayers! Thank you. Mom doesn’ t need blood tomorrow so we’ll hold out until next week. Since she’ll have it done on our normal tuesday out we’ll only be out one day next week. The trees got done but the roofer called and said the weather isn’t going to hold for them to even start our roof so we’ll aim for next week. We need about 2-3 dry days. Just no rain because we have to pull the roof right down to the plywood and replace some of the plywood. Ron doesn’t want it raining when they do that. And maybe, just maybe, we’ll be able to get our dining room ceiling to dry out so we can fix it. We’ve had a fan running on it 24/7 for a month. For those who don’t know, about a month ago we got 12″ of rain in 24hrs. It absolutely soaked our dining room ceiling in one spot. The roof was still in tact and no roofer could find a leak but Ron finally found it. It rained so hard it had slid under the shingles and once that started there was no stopping it. But anyway, for this week we’re going to get a little reprieve. For which I’m thankful. I still meet with hospice on Thursday but that is fine. Just a few hours and it’s around the corner. Ron laughed and said these days if I’m staying “in town” (meaning Scappoose) that he doesn’t even count it as time out of home anymore!

     Okay, enough said. You all take care. Thanks for praying. Chat later.

     patti

104. Administrator said,

     December 6, 2006 at 7:15 pm

     Oh, Patti, what a dream! LOL Don’t you hate those kinds? Cripes. But glad it was only a dream. . .

     You knew of someone who had a hematoma that reabsorbed, too? That’s pretty neat!

     Good news hearing that your MIL’s hgb is holding! Fantastic. And I do want to tell you that I certainly appreciate you sharing her experience here as I do think it is important that the information is made available to others. Even if things don’t work out like you’d hope, at least the info it available. It’s so hard when all you get are bits and pieces of info and you have to piece it all together yourself. I was like you in the beginning of my AA diagnosis. There just wasn’t anyone out there doing natural stuff or if so somewhere not on the net! And when the subject of “natural” is breeched, boy, some of the reactions you could really do without. So I thank you for sharing it here.

     Your Indian donor lasting a full week is great! Definitely a keeper! Slight accent or no, ha ha! That was just too funny. I hope Ron’s platelets do as well, too so your MIL will have 3 people lined up. That helps give the donors nice space between donations as I know it’s not easy donating platelets. If you could find one more compatible donor then each of them could donate once a month, which is much more bearable than once a week!

     If you can’t handle the raw stuff, then cooking lightly sounds great to me. Especially if you notice that your body can handle it properly and the stuff that “exits” looks like it should. I know that’s not the most pleasant subject, but ever since I started altering my diet, I started to realise that it DID matter what I put in just by looking at what came out as well as the regularity. I remember hearing an interview of one of the guys from Aerosmith years ago. He mentioned something about how writing a good song was really refreshing, and the feeling was like having a good dump. Ha ha! That was a paraphrase, but comparing it to “a good dump” was his actual words. I was a bit younger in those days and didn’t really think much of that comment, but I can see now that when our bodies process and eliminate foods properly and with ease it really is refreshing. Ha!

     As Brian learns more about the herbs, I can really understand now why there is so much “adjustments” made to the herbal formulas. For one thing many herbs have more than one function, and depending upon how much is given you can actually get the “opposite” effect. Not to mention people commonly have overlapping conditions which needs a tailored blend of herbs to treat their specific conditions. Part of that process is taking some and watching the result, then adjusting the formula. And just because a person may have some damp/wet condition, doesn’t mean that they don’t also have some dry conditions in other parts of their bodies. It gets complicated, but it does actually make sense. Even the food groups are divided into more groups of drying, heating, cooling, etc. For instance fish in general is supposed to be cooling, yet trout tends to be heating. Hmm. Lamb is supposed to be more heating the beef. Fruits tend to be cooling. There are also some foods which are neutral like brown rice and coconut meat. In a similar fashing there are herbs which tend to be heating and cooling. Some herbs that grow in higher regions tend to be heating and the ones that tend to grow in lower regions or by the lakes tend to be cooling. Something like that. There are also wind conditions and other things I forget at this moment. Basically I can see how it’s hard to quickly explain Chinese herbalism or any herbalism really to just anyone. The concepts are very different from a western viewpoint. Their art has taken many years (centuries) of observation and documentation. I like how they even observe the tongue, nails, skin, etc.

     Okay, good luck with the tree trimming and the roofing. Have a great rest of the week!

     Marla

105. patti said,

     December 6, 2006 at 11:54 pm

     Marla,

     You just explained very well what Dr.Kou’s been doing for the past 8 months. Every two weeks (and sometimes weekly) he has been adjusting mom’s formulas to try and get “just the right one” for her needs. He has now settled on what he will use for her for quite some time (he says a year). So in hers now (been about 3 weeks with this one) she has high high herbs for her platelets. But they are fresh herbs because these same herbs dried at this dose would make her bleed. Also high herbs for whites and reds. You are exactly right about the too much/too little thing. That’s been Dr.Kou’s challenge all along. He has to give mom enough herbs to increase her cells without causing bleeding, cell die off, etc. It’s a very very delicate balance. He finds that balance by watching her blood counts. So he finally feels like he’s got it. You can tell when he does “get it” it makes him very happy! It’s a lot of work to make sure you don’t make someone bleed to death in the process of healing them!

     You know, I know God told me in the beginning mom’s illness was unto death but I still believe God has allowed some healing to take place for other reasons. Mostly spiritual. Dr.Kou is really close to getting her reds working again. But he is working against time with the platelets. As you’ve experienced, they are hard to fix! But we’ve still seen success with at least one of her cell lines. To me, that just underscores how important it would be to start the herbal stuff just as soon as one finds out they are sick. It takes time, time, time. I think spiritually God has brought mom to a place where she finally understands that God doesn’t heal everyone. Besides the obvious that people die daily, she had to get to that point. And she has now. God has grown my husband and I very much spiritually through this process. I believe it was God’s mercy that he gave mom the past two years. Especially when the original prognosis was so grim. And very importantly, God has caused us to change our lives food wise. We are much healthier now then two years ago and we are continuing to change for the better (although my children really wonder about that!).

     Ron’s platelets seem to have been okay for mom (meaning she didn’t bleed the day after getting them). Hoping they’ll last a week also! She was so glad to have a whole week without a single mouthsore! Man, when she gets a blood blister in her mouth they are the size of quarters, and very painful. We know we have 3 good donors and her oldest grandson will donate this week. I’m sure he’ll be fine too. Then we have one more that will go next week. If all of them work, we’ll have 5 donors rotating. At least until one of them goes to NZ in January for bible school. One of my best friend’s husband’s called and said he’d give any time we need someone. It’s his daughter going to NZ so he may be willing to step in for her also.

     One thing I know I need to learn is not to let the ups and downs get me so much. This week is so much better then the past few that I just feel this great sense of relief. And then ask myself, “why am I meeting with hospice tomorrow?” But I know why. I just need to have the info. But do you know what I mean? It’s hard not to let the day to day stuff blur the overall picture. Or when things are really good wonder if the shoe will fall next week. I am very much a glass half full person but I find with mom I’m just more emotional then normal. Maybe because it’s a close relationship. Don’t know.

     I didn’t know the person personally who had the hematoma. It was one of the folks on the MDS forum. He couldn’t have the surgery because of his platelet count (which is why he bled) so they had to let it go on it’s own. But it did go away and I think that’s so important. Hey, if I have a bursting appendix, take the thing out. But if I’ve got a flaring gallbladder or something like that, let’s work through it. Know what I mean?

     I had a great example of how messed up the AMA is on Sunday. A close friend’s husband has been on cholesterol meds for several years. He’s been having trouble speaking lately and they thought it was his hearing. Now they’ve decided that his carotid artery is clogged and they did a CT scan today. They took him off of the meds because guess what one of the side effects is? Clogged arteries!! Okay, here’s a drug that is supposed to lower cholesterol and prevent clogged arteries and they caused his to do that. And what was it about my lastest cholesterol test?? Oh yeah, my triglycerides were 67 after cod liver oil and eating fat. Lots of healthy fat! And this guy has been on a low fat diet for years. It just makes me very distrustful of anything medical. Anyways, I’d better get off my soapbox cause it’ll just make me mad.

     Keep the info flowing, Marla. You’re a walking library! Especially when I don’t have time to read right now! Hee hee!

     Chou,

     patti

106. Andrea said,

     December 10, 2006 at 1:54 pm

     Hi ladies–Thanks Patti for your graciousness in saying that everything we talk about is, in the end, related to your MIL. I’m so so glad you aren’t so exhausted and are getting a little peace. ANd I second what Marla said about your sharing–it’so great to have another story, to know how the TCM is working, etc etc etc. Not to mention the spiritual growth, the prayer, the whole tamale.

     I wanted to tell y’all that Rob is in Dominican Republic with my son and having a wonderful time. He went snorkeling, has been hiking, so his reds and platelets must be holding. And he said in an email that he and my son both had “a 24-hour bug”. OK, if it was 24 hours for BOTH of them, that must mean Rob’s whites are doing a good job, eh?? So I’m happy and so grateful. He says he’s managing to maintain a healthy diet, going to markets to buy vegetables and so on.

     The drug and AMA story is of a sort that is all too familiar. Sigh.

     Phew, I’m beat, had a Christmas pageant rehearsal and have to play at a “Blue Christmas” service tonight!

     Adios, Andrea

107. Administrator said,

     December 11, 2006 at 4:23 pm

     Hi Ladies!

     Yes, Patti, I’ve heard about those meds where the side effect is the same as what the patient is being treated for! Ha ha! Many of the drugs they give to blood patients have warnings not to take them if you currently have an existing blood condition, oye. And some of those anti-depressants drugs have the interesting side effect of causing depression or one to commit “suicide.” I couldn’t believe my eyes when I saw that one. One thing I’ve read about those cholesterol lowering meds (statins) is that they interfere with the body’s ability to make CoQ10, which is “essential” for proper heart function. So with that interference, supposedly the patient’s risk for heart disease increases. . . Don’t you just love paying the pharmas to increase your heart disease risk? I’d better stop here, cuz I can get pretty cynical, so I’ll leave it at that.

     I think meeting with the hospice was a good thing in that you really need to prepare for whatever you have in store. Even if you change your mind with it, at least you have the option and know what choices you have.

     Andrea, Rob’s immune system sure sounds like it’s holding its own! Beating a 24 hour bug just as well as your son says a lot! I’m glad he’s having a nice time there. Bet the weather must be beautiful this time of year? Or am I all confused?

     How was the “Blue Christmas”? I bet you must play very well. All the pianists/organists at the churches I’ve been to have all played so well. It’s like they can read just about any music piece and play it impromptu. When I first became a Christian, I joined one of the women’s singing groups where we would sing every so often for the morning service or sometimes the evening service. There were about 6 or 8 ladies, I don’t remember anymore (I was an alto and that was before I was married and had any kids!). We had a couple good soloists, too, but not me! I don’t know why they let me sing with them! Ha ha! But it was nice at the time. The pianist used to sing solos, too, sometimes. Do you sing solos while you play?

     Okay, chat laters!

     Marla

108. patti said,

     December 13, 2006 at 3:38 am

     Oy. Can’t sleep. May as well update from my day today (well yesterday now).

     Mom actually did fine with all of her transfusions. She got two hives from the platelets from her grandson but we held out on anymore benadryl and they eventually went away. The nurse was very particular to follow this order I gave her because I had to leave for an appt. while mom was getting platelets. I told mom she just really does better using platelets as relatively close to her as possible. I laughed and told her, “where’s granny (her mom) when we need her?” She got a good laugh out of that.

     Mom looked good today. Because her hemoglobin is staying at 8 now at it’s lowest she really looks good and I could tell she felt good going into this today. If it weren’t for her HCT being so low we wouldn’t have had to tranfuse red cells. Although she’s still RBC dependent at this point, I’d have to say Dr.Kou has been quite successful in working towards his goal for her red cells.

     They have gotten to the point at the tranfusion center where they let me do a lot of mom’s care directly. I have been speeding up and slowing down her blood/platelets, switching things over to saline when it’s time, taking her vital signs when it’s needed, etc. I learned many many years ago how to take someone’s blood pressure (the old fashion way – not with an auto cuff!) and somehow that has never left me. Today the nurse double checked me (she does this every so often just to make sure) and I was right on. When mom’s done I take everything off the pump and flush her out and we head out. It’s nice because I don’t have to wait on a nurse to do all that. There’s one nurse there though that is very particular and won’t let me do anything. Not sure why. Everyone else does! Oh well. It gives me something to do during that 8hrs. But today, it just struck me that when they allow me to help out we get out of there about a 1/2 hr earlier.

     I had an ND appt. while mom was tranfusing. One question I asked her I felt really funny about but I wanted to know! Does the death “process” smell? That sounds funny but hear me out. For the past month mom has had a terrible odor about her and I know she showers because I always have this knack for calling her while she’s in the shower (who showers at 5:00pm?)! And it wasn’t body odor type smell. Reuter cleared up that mystery for me. Yes, she said, the death process produces an odor. When the liver and kidneys aren’t functioning correctly and can’t eliminate the waste products out of the body then they go to the next two places which is the skin and the lungs. And that is what is happening to mom. It doesn’t seem to happen when she feels well. Like last week and this week have been fine. But the previous weeks were awful. When I talked to Ron about it when I got home he said he noticed the same thing and thought it was just him. So, at least I know I wasn’t being picky or something. But it was interesting to understand that because I had never thought of it before.

     The other thing we found out this week (yesterday) is that there is a charity that mom has been giving to for years that has been “preying” on her so to speak. They know she is dying and that she desperately wants to be healed. Being a charasmatic (both her and the charity) they are praying on her emotions and she’s been doling out the money to them like crazy! Geez! Like we don’t have enough issues to deal with? I was so angry. I understand her desperation, but for this organization to be doing this really angers me. So now Ron and I have to step in and put a stop to this and she’s not going to be happy about it. We’re hoping to do it subtly at first. Since I do her taxes I’m going to pull all that stuff out now and see if we can get a view for what we’re dealing with. We’ll procede from there. Why do people do this? She’s an old lady, desperate to live for her daughter, she’s only running at 50% mental capacity as it is, and these folks just step right in. Up until now we couldn’t do a lot about what charities she gave to because that’s her personal business (oy, Binny Hinn) but now we have to. It just makes me sad and angry at the same time.

     I actually saw the ND for myself today but we always talk about mom first. I have done very well on the Armour thyroid this past two weeks. It seems the secret was balancing the thyroid, adrenals (cortisol) and progesterone. I know I have been getting much better with each passing week but this really made another huge difference. We are going into a holding pattern now for quite some time. We won’t make any changes or rock the boat until spring comes. At that point we’ll do some heavy liver cleansing and hopefully knock out the last of this bladder stuff and be able to go off the hormones. Thyroid maybe not – that’s been a problem for a long time. But by then hopefully my body will be producing all of the progesterone and cortisol it needs. I forgot to mention that she tried to put me on cortef for short term. I had originally agreed to it for a very short term (she was worried about accurate cortisol dosing) but after I got home with the pharmaceutical papers on it I said no way! That stuff is bad, bad, bad. I’m sorry but I’m sticking to my natural bovine adrenal glandular. Much much safer in terms of side effects! Eeeks. If you’ve never read up on cortef, do that sometime. It freaked me out. I’m surprised with the cortisol. I’ve been taking it at noon and 3:00pm because that’s when my body is almost flat out of it and it doesn’t seem to be bothering me. Yes, I’m awake, but it’s because I got woke up after going to bed and I can NEVER go back to sleep after I get woke up. I’m still working on that. But the cortisol in that late afternoon didn’t keep me from going to sleep which is what I expected it would do. It’s amazing what happens when you give your body what it needs, when it needs it. So, just like Kou found mom’s best formula, I think we’ve found mine for awhile.

     One “side effect” of my hormones being more level is that my daughter’s are also! Ya know that two females in a house thing? At least one day out of my cycle my oldest would just fall apart for that 24hrs. She’s going through puberty and it’s really noticeable hormonally at that time. But with straigtening out my hormones she is MUCH better. She wigged for about an hour and that’s it. Nothing that cuddling and talking couldn’t easily take care of. That was a nice change!

     In general, a better Tuesday out then we normally have which is nice.

     Andrea – it is fantastic that Rob is doing so well in the DR! What a testament to how taking care of oneself and trusting God for the rest can do for our bodies. Very cool. When do they get back?

     Okie dokie. Off to try and get some sleep again.

     patti

109. Administrator said,

     December 13, 2006 at 9:58 pm

     Oh, Patti, your comments on the “smell” of a person reminded me of a brief conversation we had on the AA forum a while back. Basically, “yes” I do think illness and death has an odor. First of all, I remember watching a program on TV a long time ago about certain dogs that were able to “smell” cancers and some dogs who could sense the onset of a seizure. It’s thought that a possible chemical imbalance occurs which the dog can actually smell when a seizure is about to happen. Also during the documentary a man who had skin cancers was made to lie on the floor face down. They taped off his cancers and other moles so that the dog wouldn’t get distracted with the various spots. Then they would let the dog sniff around the guy, and the dog would place its paw on the spots where it smelled cancer. Some dogs were able to smell very small cancers that were not even detected yet, but were later! So, that reminded me of my sister’s experience as an RN. She had a patient who had a heart problem, but also had a big cancer on her back. Well, this woman coded, and the crash cart and all was brought into the room. All the commotion and pressure on her body to restart her heart caused the cancer on her back to burst open, and my sister said that at that moment the “stench” was horrible! It squirted on the doctor, and he had to shower right there in the room. Also, in highschool, I had a neighbor whose mother had brittle diabetes. Well, one day she came home and found her mother passed out lying on the bathroom floor. She also noticed a “tooty fruity” smell. Turned out the explanation was that her mom was spilling out lots of sugar, and that was the “smell.” My brother-in-law also had an experience recently. He visited his brother and gave him a hug. When he hugged him, he actually “smelled” something odd. He didn’t know what it was, but he just looked at his brother. Shortly afterwards, he found that his brother was diagnosed with thyroid cancer. When he found out, he realised that was probably the smell. He said it was a distinct smell. And have you smelled convalecent homes? When I was a kid I didn’t like to go into those because they smelled funny. Now my feeling is part of the smell is all the drugs older folks tend to take possibly combined with their bodies aging. I used to think it was mainly the drugs seeping out of their bodies, but now I think it might also be “their” bodies giving off the odor. Course that’s just a hunch as I have no proof of that. Just my suspicions. But I do think depending upon what disease a person has, they may very well have a peculiar odor, and animals with sensitive smell might be able to sense that. Old people and babies certainly don’t smell the same to my human nose! But then again, it would be interesting if we could compare the odor of the elderly who “aren’t” on meds with those who are.  That would be interesting to know if they smell differently.  Is it the disease or the drugs or both giving off that old people smell?  (Oy, and perfume dousing is another topic! Ack!)

     That’s terrible about the organization taking your MIL’s money for prayers! I’m glad that you and Ron are going to get to the bottom of that one. I’m sure better use can be made of the extra cash like helping to take care of Marie when the time comes. Oye, sorry to hear of yet “another” thing to deal with!

     Also glad that your hormones appear to be stablizing. I do think it’s a good idea for you to go easy with the changes, so letting your body stablize before making any changes sound good to me. And, yes, I’ve heard about the multiple female phenomena, ha ha! I’ve never been able to really test it out, but I’ve heard about that how we tend to cycle around the same time and all.

     Thanks for the heads up on Cortef. I would like to look that stuff up.

     Okay, better go check with what the fam is up to. They might be doing something fun, heh.

     Toodles,

     Marla

110. patti said,

     December 13, 2006 at 11:23 pm

     Marla,

     I’ve heard about the animals that can smell cancers and seizures. It is an interesting phenomena. We have a family at church who has a severe downs syndrome little girl. They are working on getting a dog for her that will be able to anticipate when she needs help, notify the parents of unusual things, etc. I never knew how expensive it is for folks to have animals like this! It costs $12K for them to get this dog. They are trying to raise money right now. But they really need it for this little girl. The mom has to keep her tethered to her skirt all day or she’ll get into trouble. Drinking things she shouldn’t, escaping, etc. They’re hoping the dog will help with some of the needs she has for protection. Yep, smell is an interesting thing.

     I think the thing that got me with mom is I have a terrible sniffer! Something has to be REALLY strong for me to smell it. When my kids were babies my husband always smelled the diapers before I did! To bad we didn’t live by “he who smells it first, changes it first!” I would have gone diaper free for years! Kidding, of course. I guess that’s why the odor thing really got me. But if you think about how toxins leave the body it makes all kinds of sense.

     When I was in college we had 60 girls in our sorority house. We ALL cycled within days of each other. Whew! There was some major PMS going on there. It’s nice to have this calmer change in my house.

     Okay, off. Y’all take care.

     patti

111. Andrea said,

     December 14, 2006 at 8:10 pm

     Patti, That charismatic organization preying on your MIL is just the pits. What could be lower?? BLECH.

     But so glad things are smoothing out a bit. Interesting, the smell thing–Rob also has had peculiar smells about him on and off during his recovery, and I wondered . . . .BTW Marla in answer to your question, I do sometimes sing solos as I play, but much prefer to sing with others. Duets are fine. the lead soprano and I do a respectable “His Eye Is On the Sparrow” together–and “Here I Am, Lord.” But mostly I sing with my little choir.

     Rob gets back Tuesday. He must be having fun–I asked him an email question , and he wrote me back a smart-alecky answer. (Nothing was showing up ont he debit card he took, so I asked him how he was paying for the trip. He said, “Selling drugs, of course.” Wise guy.) Yes, it’s a good testimony. I’ll admit I was nervous about it, but I’m also very proud of his courage and joy in life. And grateful to God, both for his healing–and for the illness, which has taught me so so much–and gotten me two good cyber friends!

     nightie night ladies, Andrea

112. patti said,

     December 20, 2006 at 10:23 pm

     I wanted to take a few minutes to update on this week’s goings on. We had some difficulty getting donor platelets this past weekend but we did manage to finally pull it together. We had a young gal whose hematocrit was too low to donate and she felt so bad. I know she wants to help mom so much. She’s a very close friend and I felt bad for her. She used wisdom though and called me right away which allowed me to move pretty quick. We called Ron’s brother and told him we needed him to donate withing two hours from the time we were on the phone. That was the schedule the red cross had available at the time. He wasn’t sure he could make it. He and his wife were at the mall shopping! But he was going to try….. I’m not even going to go where that took me that day but you can imagine what I was thinking. Nonetheless, he managed to make it there. His wife furious that their shopping trip was thwarted, but he made it. They got the platelets out okay but when they went to put the blood back in his arm something happened and his arm swelled really bad. He told Ron today that he loooked like he’d been beaten with a baseball bat on that arm. Donor #2 couldn’t finish. And so to my husband. He ended up going in at 11:30 on Sunday morning (that was their only available time – and only because someone cancelled). Ron has missed church several times due to donating at the last minute because something didn’t work out but there isn’t a lot we can do about it. The red cross did say they weren’t sure they’d be able to get mom’s platelets processed by tuesday but they’d do the best they could. This is the one week she really couldn’t wait until Wednesday so we just prayed. They were ready. She was down to 4000 already and was really feeling run down and like something wasn’t right in her gut. Bleeding, I’m wondering? Anyway, she got Ron’s platelets and did get one hive but not until they were all infused and it went away on its own. She was soooooo wiped out yesterday I can’t even begin to describe it.

     We saw Dr.Kou in the morning and he continues to do moxa treatments and he tweaked her formula just a little bit. He said now that her HGB is rising that we should see an increase of 1/10 each month until her HGB is normal again. Approx. one more year.

     After Kou we saw the NP (Bonnie). We also found out that Dr.Karup has been moved to a different office so we will continue to see Bonnie indefinately and only see Karup when Bonnie (or Medicare) says to. I’m okay with that. I really have a much better working relationship with Bonnie and so does mom. Bonnie noted something going on with mom’s heart this week and asked mom if she was having any heart pain but didn’t further elaborate. I didn’t push it and mom didn’t catch the conversation or Bonnie’s actions so I just left it. At this point, what would it matter? If it’s something we need to know Bonnie will tell us outright.

     We ran to Wal-Mart to grab one last gift for the kids and mom had to just stand in one spot while I ran to the game section (had to get Operation – do you remember that game?!). By the time we got to the infusion clinic she was just gone she was so exhausted. She literally slept the entire time (1 1/2hrs) and she slept through me changing her picc dressing! I’m not sure how she could sleep through someone pulling tape off of her arm, but she didn’t wake up until I was putting a new cap on. And she was still exhausted.

     We came home and she slept on our couch for a 1/2hr until dinner was done and then she went home and went to bed at 7:30 and slept all night. I have NEVER seen her so tired. We have busy days all the time but she just couldn’t wake up today. She smelled horrible and I wonder if it had something to do with too many toxins in her body and just not being able to get them out making her feel so tired. Marla, thoughts?????

     For awhile I had been sleeping better but now I’m back to not being able to go down until 2:00 or 3:00am. It’s killing me. I finally asked Reuter for some “knock out drops” today. That’s what she calls them. They are a combination of botanicals that she says two drops will drop me flat. Better take those lying down! However, it’s going to take her a couple of days to get them whipped up at the medicinary and she asked me to have Smucker call in a prescription for Ambien until then. She’s afraid with Christmas coming I won’t see the knock out drops until late next week. At first I agreed to placate her (and that’s what she called it) but after I got off the phone, I decided I can’t take that stuff! It’s so bad for you, and I’ve heard too many horror stories about people waking up in the night and driving places and never remembering. Nope – I just couldn’t do it. I am trying so so hard to just cast my cares on the Lord but am finding it so difficult to do that at night when my mind is racing of mom and school and everything else. So would you ladies just pray that God would be able to still my mind and I could sleep like a normal person? I know that my not sleeping is emotional. I will readily admit that. I just don’t know how to make it go away at this point in my life. I pray and pray when I go to bed and usually that would knock me out but this week it just isn’t happening. How am I supposed to feel? Mom is dying right before our eyes and the only one who will admit it is Ron. He and I feel like we are just silently going through this as his brother watches and doesn’t care. We know and fully feel God’s presence in all that has happened, but it doesn’t change the grief and sadness at the loss that we are feeling. Maybe God has us grieving early or something. I’ve wondered about that. Because when He does take mom home we will really need to be able to handle our kid’s grief and Marie’s as well. So maybe God needs us to go through all these emotions right now. I don’t even pretend to know or understand.

     I think that’s it for now. Next Tuesday looks like a cake walk compared to our norm. She has zero – yes, I said zero- doctors appts. Just platelets. And Lord willing, it will stay that way.

     Andrea, I LOVE His Eye Is On the Sparrow” and “Here I Am, Lord.” I can hear them in my head right now. : ) The song that God gave me two years ago that I sing every tuesday as I get ready is “Jesus Led Me All the Way.” I don’t know why, but God gave that to me and it’s been such a comfort on those days I’m preparing to go out. I have an almost bass voice. Not quite, but real close. My husband and I sound really good next to each other. : ) Wish I had time to sing in choir. Maybe when I retire!

     I’m off to try and get some sleep tonight and make up for so many lost hours this week. As I have reminded my children this whole month, this is a time to once again thank God for sending his son to save us. “It twas his blood, his precious blood, that stained the old rugged cross…”

     Patti

113. patti said,

     December 27, 2006 at 12:18 am

     Quick update on mom. We had a very nice Christmas with mom and Marie both coming over. Mom did stuff this year that she never does and you could tell that it was very much on her mind that this was probably her last Christmas. She made each of the kids wait to open their gifts from her because she wanted to watch each one and she just took in their joy and smiles, etc. We just had a really relaxing day with a nice lunch and when she was leaving she really hesitated and almost starting crying. Almost like she didn’t want the day to end…..

     My friend who had been unable to donate platelets last week was able to donate this week. : ) As we had planned, they ran a stat CBC to see where her counts were at so we’d know if she needed an RBC transfusion tomorrow or next week. Once again, shock and awe….Her HGB held at 8! Yippee. Her HCT was 23! Eeeks. I had just finished telling the nurse we were expecting it to be around 27 based on our previous experiences with where she was at last week. In order to save us another trip to Portland tomorrow they actually ordered her blood right away and we transfused her today. We cut back on the pre-meds just a little bit. Instead of 650mg of tylenol we only gave her 500mg. Just that little bit of difference mixed with the IV benadryl prior to the platelets didn’t seem to knock her out so bad. She was very grateful for that. It did all wear off before she was done getting blood and she got a few hives from the blood but nothing major and we didn’t treat them. They did go away on their own (thanks, Marla!).

     So all in all, a pretty good day out. A little surprised at the that low of an HCT but still thrilled that Kou has managed to get her HGB to 8!!! I am still in awe of that feat because it was a major accomplishment.

     We are going to take some time this week to go out and do something fun as a family and both Ron and I are looking very forward to it. The kids don’t know yet, but I’m sure they’ll be thrilled.

     Not much else new so I’l go.

     Patti

114. Andrea said,

     December 27, 2006 at 12:33 pm

     Hey Patti, sorry I didn’t get your prayer request as to sleep to now but I certainly will pray for that. It’s so hard to manage without sleep, and it’s so hard to sleep with a buzzing mind!

     I’m so glad you had a good Christmas–and that you know some of my fave hymns! I don’t know “Jesus Led Me All the Way”–have to look that one up. My Hymn for Hard Times is –I Need Thee Every Hour. That pretty much sums it up. (Or should that be ‘every minute”? Or “every second”?)

     Speaking of benadryl, have you ever tried that for sleep? I used it and found it non-addictive and effective. Only thing I noticed was that it was harder to wake up. But it definitely helped me through some hard nights, and I think it’s milder and safer than Ambien.

     And while we’re on the subject of sleeping pills, my med school son told me this story: You know Lunesta, the sleeping pill that has the pretty green moth that lands on everyone and puts them to sleep? I joked with my son that he’d better prescribe that for me when he graduates, ’cause I LOVE that moth, and he said that once he was with a woman and her 8yo and the woman was complaining that she couldn’t sleep because of a stuffy nose, and the little girl said, Mommy, why don’t you try Lunesta?

     Now THAT’s marketing!

     hang in there patti, Andrea

115. Administrator said,

     December 27, 2006 at 3:58 pm

     Hi Ladies! I get the feeling that you had a pretty nice Christmas! Thats so nice to hear! (Im having trouble with my apostrophes right now, so in case you notice Im not adding them, well, its cuz I need a new keyboard or something!)

     Anyway, that is amazing that your MILs hgb is holding out at 8. Actually the hct reading of 23 is pretty much right in there with an 8hgb. Basically, the hct “normally” is the hgbx3. So 8×3=24. Now the difference between the hgb and the hct is that the hgb is a measure of the amount of hemoglobin in the blood, while the hct is the mean volume of reds to plasma. Many times the hct is skewed with people with bone marrow disorders because the size of our red cells are commonly not the normal size and that skews the hct reading from the normal hgbx3 formula. The reason why it skews it is because if the red cells are large (meaning that they are immature) then it takes less red cells to fill up the sample since they are larger than normal. So a high hct reading could be misleading if you dont take into account the MCV of the red cells. And conversely, if the reds are smaller than normal, then it could take *more* red cells to fill up a sample.

     Thats so nice that you were able to reduce your MILs meds! I can image how much better she feels. I personally dont like feeling out of it! Ha!

     How fun to go on a trip! Im sure youll have a great time! I wish I were taking a trip! Tell us about it when you get back!

     Andrea, I am so happy that Robs trip was such a success! And his trip was major, not some baby step! Heres to living more fully in 2007!

     Regarding the Lunesta, cripes! Now thats teaching the kids early! Fortunately we dont watch much TV at all in this house. I mostly see those commercials at my parents house! Now talk about TV watchers. . .

     Okay, ladies! I guess thats about it for now. Did you hit the after-Christmas sales? Hee hee. I mingled a little in there, but maybe Ill try again after New Years. Ill see if anythings left by then. . .

     Oh, one other thing. Since this thread has already gone over 100 comments, I was thinking of starting up a new thread to continue. Ill start up a new post on the first of January to continue Steeles MDS Chronicle for 2007, okay? So look our for it, and we can continue there after the close of this year.

     Hugs!

     Marla

116. Administrator said,

     January 2, 2007 at 1:26 pm

     Okay, folks! Happy 2007! For the new year, we’re continuing Chronicles of Steele at the post titled, “Chronicles of Steele 2007.” See you there!

     Marlakins

117. Kaye said,

     July 2, 2008 at 9:16 am

     Hi,

     My mother was diagnosed with MDS a few years ago and now is at the point where she is receiving platelet transfusions every other day. Her last count was 8,000. The doctor said she might have 6mos to a year to survive based on the maintenance treatments. She is receiving all through a picc line. Her diagnosis now is refractory mds with excess blasts and acute leukemia. I can not accept his conclusion about her life. There has to be some natural treatment that would help to build or maintain her platelets and blood count and extend her life. Please I need help. Can someone with experience call me at 443-567-2596 to discuss options further. Thank you, Kaye

118. Administrator said,

     July 2, 2008 at 8:04 pm

     Hello Kaye:

     I just sent off an email to you privately since here in LA we’re about 3 hours behind your time. So I figured it’s a bit late there. One thing I didn’t mention in my email was whether you have looked into Essiac Tea and Pau d’Arco.  If you do a Google search for those teas and cancer, you will likely find some hits.  My dad has multiple myeloma and appears to be benefiting from the combination of those two teas. Multiple myeloma is a blood plasma cancer for which the current medical community has no cure. Even bone marrow transplants are not considered cures in the medical community for multiple myeloma.

     Hopefully someone else will see your post here and contact you.

     Take care,

     Marla

119. patti said,

     July 2, 2008 at 9:35 pm

     Hi Kaye,

     I have to second Marla on those teas. I wish we’d known about them when my MIL was going through her MDS/leukemia. My MIL did take essiac tea for awhile but she should have stayed on it and I believe she needed to make it stronger. But Marla can correct me on that if strength doesn’t matter.

     Have you tried juicing fresh pineapple for your mom to help with her platelets? My MIL would get a 10K boost in platelets if she ate or juiced a fresh whole pineapple a day. I know it’s a lot, but it can help. The pineapple seemed to work for my MIL for about a year before it stopped.

     The only other thing I can think of for platelets is this stuff mom’s chinese doctor gave her. They use it in China during battles when a soldier is bleeding on the battlefield. They can put a pellet in their mouths and it will instantly stop bleeding until they can get medical care. We used in on mom a few times to try and prolong her platelet transfusions. If you’re interested, I can send you Dr. Kou’s contact info. Unfortunately, he’s very chinese and very hard to understand on the phone, but he might be able to help a little.

     Do you know where your mom’s blast percentage is at? Did she have RAEB that transformed to AML or did she have some other type? My MIL lived over 2yrs with well over 50% blasts in her marrow. Are all three blood affected? There are foods mom juiced for the different blood lines. Juicing beets are excellent for red blood cells. Another thing I wish we’d taken more of was chlorophyll. It’s a good hemoglobin builder. Mom took it, but not much and not often. I wish it had been one of her staples.

     Marla, do you know if chlorophyll affects iron? That could be a negative to the clorophyll if iron overload is already a problem. Kaye, do you know where your mom’s ferritin level is? Does she get RBC transfusions very frequently?

     patti

120. imackamGaiple said,

     December 19, 2008 at 7:56 am

     Hi

     As a fresh goatrevolution.com user i only wanted to say hi to everyone else who uses this site

121. FepepeCah said,

     February 15, 2009 at 2:57 am

     Hello.
     I’m new there
     Nice forum!

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