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Old Tue Nov 26, 2013, 12:29 AM
1aplasticdiva 1aplasticdiva is offline
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Join Date: Jul 2013
Location: Dallas, TX
Posts: 3
30 y/o woman with AA dilemma

Hello everyone. I must say I never imagined needing to be apart of a forum like this but honestly I need you guys. I don't know which way to go. I was diagnosed in 9/2009. I have rituxan in 12/2009 and ATG in 2/2010. I was kept on cyclosporine until 8/2010 then switched to prograf. I had to have platelets about every three weeks and blood about every 12 weeks up until 3/2013. My counts fell (hgb 6, platelets 5) and every since then I've needed platelets every week and blood every other week. My doctor just took me off of the prograf since I haven't responded to it. He said my only chance of survival is a BMT. However I don't have a match. All I have is my parents who are naturally half matches. We've searched the database for 3.5 years and I haven't found anyone. Im lost. I don't know what to do. None of the medication is working. Do I insist that my doctors do ATG again? I got a second opinion and that doctor also feels that another round of ATG won't help. Do I have a half match transplant? Its so risky. Has anyone here ever had one? I've tried reaching out to the NIH but they are really challenging me to get very specific records which is tough because most of my records are in Wisconsin and the last year are in Dallas. No one in my family has AA, no one knows what Im going through. I don't know what to do. Im very afraid that I will make the wrong choice. Is there another medicine I can try? Im lost.
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