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Good advice Dan.
I am just short of 5 years post transplant. In most cases the GVHD is not a real problem and seems to cease being a problem in a couple years. Not so for me.
3 months post transplant I had a severe case of gut GVHD. My wife was advised that it would probably be fatal. They did not tell me so I survived. I spent 2 months in hospital and went 3 months without eating or drinking anything. I was on IV feed.
Things got better. At the 1 year mark I was declared to be cured of MDS and I was taken off all drugs. Within days I came down with severe skin and eye GVHD. Ii was put back on drugs. The skin was healed but the eyes have gotten worse. I now have anemia, fatigue, blood pressure problems and dizziness while not life threatening are is giving me poor quality of life. My doctors have no way of telling for sure if my problems are GVHD or something else.
I partly blame the doctors for not tapering me off prednisone at the 1 year point. My advice is to do you own research and not to be afraid of questioning your doctors.
Ray
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