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Old Thu Sep 23, 2010, 08:11 PM
Lisa Z Lisa Z is offline
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Join Date: Nov 2008
Location: Ft. Washington, PA (Philadelphia area)
Posts: 111
If I thought I was only going to live 4 more years, tomorrow would be the last day that I would work. I'd at least want the remaining years to be work free and totally enjoyable with my family and doing what I love, every day!. But, I truly believe, that even though I am likely low risk to low-intermediate, (what ever that is), I think I will live for a long, long time and I have begun to live my life accordingly, to some extent. If I ever thought that I had just years to live, I think I would be depressed all the time.

My docs will not even give me a prognosis in terms of life expenctancies. They really don't know. Everyone is different. And, like I said, I met some amazing people at the International conference who were very encouraging, as far as that goes, who have lived long lives with bone marrow failure diseases. And, when I was getting transfusions at my local hospital, (haven't needed one in 14 months :-)), one of the nurses told me she had a patient who had been getting them for 20 years! (don't know her disease though). So, statistics are just that. Sure, they will be accurate for some of us, but I don't think one should put too much weight on them. I still feel, it's something we don't need staring us in the face, and certainly not for those newly diagnosed. Just my opinion.
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Dx. 6/08 with AA, then changed shortly thereafter to MDS. Campath trial at NIH March '09 and have been transfussion independent since June '09
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