Trials and tribulations of a patient in search of a bone marrow transplant

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Monday, June 2, 2008

Day 23

We are anxiously awaiting the news that Steve's donor's system is taking over. The only way I know to check for now is to see what blood type they are using for his transfusions, since he is still needing both platelets and blood, although his white counts are good. They transfused him yesterday with ONeg, but said with his crossmatch he could have taken A, B, or AB negative. The donor was APos, Steven BNeg. It means the new system hasn't taken over yet, but the nurse doesn't think it is terribly unusual. We won't know for sure until they do the bone marrow biopsy, which should be coming up shortly. Steve is day 23 today. This whole changeover of bloodtype is fascinating.

After a couple of really rough and scary weeks in the ICU, Steve is much improved, though still very dizzy. The heart doctor has been in several times and says he has congestive heart failure (CHF). I read in the booklet he brought that even multiple transfusions can cause CHF, never mind all the drugs and chemos. That doctor changed several medications and the fluid dropped right off. Skinny ankles again, Hallelujah! They are having trouble getting the Prograf level correct with oral medications. It is way too low today but was double too high yesterday. They have to stabilize everything with the oral medications before he can come home.

Steve is very fatigued, but clear and understandable. He still has trouble eating due to the mouth sores, but they have taken him off intravenous feeding. Still has elevated sugar levels so they are giving him insulin regularly. It's all a balancing act.

A PT guy came in this morning and walked Steve out of the room and down in the elevator and outside, in his hospital gown. Since Steve hasn't walked in weeks, except once briefly with me, I am delighted that they are starting to work with him on that. Steven kept telling me what a beautiful morning it was.

Steve is starting to complain about the hospital bed, the toilet, the room temperature, the Kleenex, the fit of the 50 pairs of underwear David and I bought him. David says when a patient starts to complain, they are getting better! He can complain all he wants and we'll just cheer him on! I asked Steve an hour ago if he wanted his computer back in his room and he said not yet.

Steve is good right now for phone calls or visits. He is still in the ICU, but they are talking about moving him to the normal rooms when they can. And as soon as he is stabilized, he can come home, with very frequent visits back to the clinic. The fatigue is a known problem and will probably be one of the most difficult things to deal with at first. He is already talking about going back to work as soon as possible. We all know that will take some time, but it shows his good attitude.

Our friend and fellow transplant recipient Lauren, who went home for a couple of weeks post transplant, is back in the hospital for tests. We know that can happen and are mentally prepared, though we are surely hoping it won't be necessary.


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