About 15 years ago I was told I had a myeloproliferative blood disorder evidenced by a very high platelet count. No treatment was recommended. Suddenly in 2004 the platelet count dropped significantly (back to within the normal range) but the red blood count and hemoglobin also dropped to below normal. In March 2005 my spleen enlarged and after a bone marrow aspiration I was diagnosed with idiopathic myelofibrosis.
I am 61 years old, work full time, have no pains or discomfort to speak off other than night sweats. (Does anyone know how to reduce night sweats?)
I am now taking procrit once a week (40,000 units) to stave off mild anemia and stay at the minimum normal RBC and hemoglobin level and do monthly CBCs for monitoring. Doctors have told me that I will need a bone marrow transplant at some time in the future and I have a sibling who is a match. My doctors don't subscribe to the idea that no transplant should be given to anyone over 55 and go as far as 70.
What is so unsettling, however, is not knowing how this disease will now play out. I do not know what plans to make in the interim. Will it be one year, two, five? They can't tell me. A bone marrow transplant will put me out of commission for about a year I've been told, which means that my job would be lost too.
Only a few people in my immediate family circle know about my condition but not at work or any of my friends. Is there anyone out there with a similar situation who might have some concrete advice?