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

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Sunday, May 18, 2008

One week out from Transplant

Steve is having a pretty rough time of it at the moment. Not totally unexpected, but hard to watch. They have him on oxygen and feeding tubes and a huge tower with numerous pumps. He is very confused. His neck and face are swollen because of the steroids. He can't swallow because his whole GI tract has been ravaged and his throat and mouth and tongue are solid blisters. It is hard to understand him as he can't speak clearly. He is shaking like a leaf all the time, drops everything he tries to pick up. Every few minutes his whole body does an involuntary spasm. I can only say we hope this phase passes quickly.

Here is a photo of Steve taken last Sunday, two days post transplant. All things being relative, he was doing well at the time. He is quite bald, and remember the swelling of face and neck comes from the steroids, but you can see he still has a good attitude. We all marvel at Steven's strength, both physical and mental. I cannot imagine surviving even a tenth of the indignities his body has suffered.
My brother and I went to the hospital on Saturday for a five hour series of classes addressing many of the post transplant concerns in depth, taught by Dr. Berryman (who was at med school with Steve's brother) and other key members of the transplant team. It was well done, with a lot of specific information which may help down the road. There were many transplant survivors attending, at varying stages post transplant. It was interesting to hear their take on the journey and to see how very differently each one of them has progressed. They stressed that each patient will find their "new normal".

One of Steve's colleagues from Fidelity visited the other day bringing a set of poster boards done by people at work with their photos and little notes from each person. Very cheerful and sweet. We taped them up all around Steve's little room. His Saturday nurse, who had Steve for the first time, saw the posters and asked if Steve worked at Fidelity. Then she asked if he knew several different people, all of whom he did. Then she said that one of them was her fiancé. How small is this world?


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