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May 12, 2004 DAY #197


I just got home again from my doctor's appointment. Everything is fine. No sign of rejection anywhere. The last week and a half has been pretty difficult though. You all read about my abdominal pain last Sunday. That has faded out to almost nothing. I can still feel it, but it is MUCH better. Just to keep me miserable, my back decided to give out after I got home from work yesterday morning. I spent most of the rest of the day in bed. Fortunately, this is a chronic condition that I recognize, and know how to deal with. It is a little better today. I was able to get to the hospital and back by myself, but I am moving very slowly. This is the first appointment I have been to where Menchie wasn't there by my side. She is working today. It was hard to convince her to go to work, but she went, and I did fine.

People are curious about what the peripheral neuropathy is. It is a nerve disorder. The symptoms I used to feel were extremely sensitive feet and shins. The slightest touch on my shins were extremely painful. The sensitivity of my shins has subsided since I have been on a lower dose of cyclosporine. In addition, my toes were both numb and highly sensitive. I could not tell if my feet were hot or cold, but I could tell if you touched them with something hot or cold. The numbness of my toes created balancing problems. They are still very sensitive to the touch. The balls of my feet feel swollen, although they are not. It feels like walking on marbles or golf balls, although it feels good to walk because that seems to help keep blood from pooling in my feet, which makes the pain worse. The pain is a burning, buzzing feeling in the front half of my feet. It feels like my feet are recovering from being frozen. Many of you have felt frozen (not frostbitten) tissue coming back to life. That is not pleasant. My feet feel like that all the time. It is also similar to when your leg or foot has circulation blocked and goes to sleep. When the blood flow starts up again, that is sort of how the neuropathy feels in my feet. Throw in a few painful muscle spasms in my toes every once in a while, and you pretty much have my peripheral neuropathy. Cutting down on the cyclosporine has lessened the scope of the problem. It has also eliminated the tremors, that disappeared unnoticed a couple of weeks ago unless I get really exhausted.

On the medical front, my creatinine was up to 1.7, although I have a theory that it was high because I had just taken my cyclosporine by mistake about an hour before I went to the lab. The doctor didn't even mention it. He did say that the abdominal problems I have had are clearly NOT Graft vs Host Disease (GVHD), and told me to cut my cyclosporine dose in half to 25 mg twice a day! YEAAAAAAHHHHHHH! That will probably help the creatinine levels and the neuropathy too! The doctor wants me to try Alpha Lipoic Acid for the neuropathy too. I guess that has been effective in diabetic neuropathies. I told him he just wanted to experiment on me, and he just grinned. If it helps, it will be handy for him to know for future patients. Everything else is NORMAL. NORMAL!!!! My next appointment is in two weeks!

Lab Results

Blood Cell Type

Normal Low





WBC 4.5 4.4 4.7 6.3 5.2
RBC 4.20 4.18 4.37 4.10 4.40
HGB 13.0 13.8 13.2 13.0 14.2
PLT 130 206 196 207 291

Have a great week!


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