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

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Tuesday, August 19, 2008

It All Depends on Who You Listen To

Hmmmm, in two or three appointments with the nurse practitioner Lowell, whom we like a lot, Steven was told that the flow cytometry tests showed a miniscule amount of leukemia coming back. Then at last Tuesday's appointment, Dr. Agura said he saw no leukemia in the hand done tests, that the donor's DNA was showing up 100%, and that he wasn't worried at this time. When we asked him about what we had been told about the leukemia returning, he said he didn't see it, but one could read the same report different ways. Frankly, we prefer Dr. Agura's version.

Agura did take Steve off his Prednisone and said he would shortly also take him off the very low Prograf dose he is still taking. Since Steve is only 3 and a half months out from transplant, that is incredible. Normally with an unrelated donor one would need to take anti rejection meds for a year to life, especially when it was not a perfect match. For some reason, Steve is so far showing none of the symptoms of graft/host disease. Everyone else we have been following with similar transplant times has had some degree of graft/host, and they were all perfect donor matches. Actually, they would like Steve to show some GVHD because it should also fight the leukemia more. far, so good. We shall see what happens when they remove the Prograf completely.

Last Friday, Steve saw the heart doctor who said everything looks good for now, but that he would probably have to take the heart medications for life. They will check it again in six months. When he started having the heart problems way back in January at Baylor Irving after he contracted MRSA, the heart wall had thinned and separated. It looks good now, but the doctor thinks it is the heart meds which are keeping it in shape and that if he removed them, Steve might go back to having problems in a couple of months. On the other hand, Dr. Agura thinks that Steve's heart has a good chance to repair itself and that he might be able to drop those meds somewhere down the line. Hmmmm, still again we shall see.

This last Monday, for some reason all Steve's counts that had been looking so good dropped. White cells, hematocrit and platelets. Steve's hematocrit was actually just 3/10 of a point above automatic transfusion level and normally they would have given him blood. But Dr. Agura wanted to try giving him a B12 injection and putting him on high B vitamins to help him with his counts. So once again...we shall see. The doctor also put him on a weekly appointment level which is nice. Next Tuesday will tell if the vitamin strategy does the job.

Changing all of his medications around has left Steve quite tired. Coming off Prednisone, he "hit the wall" but is starting to feel better. They lowered his Bactrim dose to preventive, not treatment, level and they also halved the dose of Coreg, the heart medication. It will take a few days to see what happens there. Every reduction in the handfuls of pills he has to take is welcome. Steve actually changed a tire on Lisa's car the other day, but ran out of energy with two lugs to go.

Steve asked Dr. Agura if he needed to find a new internist for routine health problems, but Dr. Agura said he will be his doctor for everything for the next five years. They will keep checking Steve's bone marrow regularly to keep an eye out for the leukemia.

So all in all, things are going pretty well all things considered and we have high hopes for more energy soon. Bless Steve's donor once again. Life is good!


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