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Old Tue Sep 13, 2016, 09:32 AM
Margaret W Margaret W is offline
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Join Date: Dec 2015
Location: Michigan
Posts: 31
Welcome, Charles. I'm sorry to hear of your diagnosis and wish you well as you pursue treatment.

I was diagnosed with severe aplastic anemia on Nov. 7, 1972, when I was 22. I'd had symptoms all my life, though. At that time there was no treatment available for aplastic anemia and they treated symptoms only. At that point, my platelets were 37K, my neutrophils were nearly 0, I had no granulocytes, etc. My hemoglobin was around 6 and my RBC count was under 1m.

I went into a "stabilized" condition, had a baby in 1974 by C-section with a LOT of transfusions... Then in 1987, everything took a nosedive and my platelets went to a routine 0-5K. I had my brothers tested for a possible bone marrow transplant at Fred Hutchinson Cancer Research Center in Washington state, but although they were all suitable matches, they didn't want to do it and so that plan was nixed. (My sister refused even to be tested.) At that time, ATG was experimental and so after the fight with the insurance company, I had 16 days (!) of equine ATG. I went into a partial remission for quite awhile and only crashed again last fall.

A BMT generally is a cure.

Everyone is different and everyone's course of aplastic anemia is different, so the treatment itself must be tailored and custom-fit to everyone. I think people should keep in mind that the need for each transfusion should be carefully considered. I'm at a point now where antibodies have built up to where I can never have a transfusion again and that's a rather discomfiting thought. But I've had almost 44 relatively good years with this disease (actually more, because they tell me now I was probably born with it). No one ever, EVER thought I'd be a senior citizen with this without ever going into a complete remission, but here I am.

Again, I wish you and everyone else here very well... AA is not the easiest thing to have because people simply don't understand it (not even doctors outside of hematologists, and sometimes, not even hematologists know much about it). But you can live a good life with it, if you're very careful.

Margaret
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Margaret, SAA patient diagnosed 1972; ATG 1987; moderate AA for years; hep. C from transfusion 1987; now SAA is back.
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