I am 43 years old and since I was 32 I started getting blood transfusions. I get them every week and now ten years later I have heart failure, pulmonary hypertension and my lower legs/ankle and feet are tight ,purple and leathery. The Hematoligist in ND, Mayo in Minn and AZ said I need a stem cell transplant because what I have is so rare. My red blood cells drop to 3,4,5 from 7 where I hang out at . I have to go in every week for blood. My WBC is 3. The Dr. in Mayo Minn thinks I won't live through the transplant but the ND and AZ Dr's think I should have it . Has anyone else had this disease etc.