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Hi Connie
Thanks for your kind words. I'm leaving for Maryland this Sunday to go to NIH Tuesday, just for an evaluation (and ANOTHER biopsy, ugh). I hope I qualify for a study there. I could go somewhere here in Texas, but my insurance company won't cover a donor search or match. I just found out that I could appeal, but we'll see what NIH says first. I'm sick of having shortness of breath, but I don't think I'm as sick as alot of people on this forum since that's my only complaint. How are you doing?
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Linda, 47 yo, married, mother of a teen, moderate AA w/ TERC mutation (2007 NIH), Pulmonary Fibrosis 2010, was on Danazol study (Aug 2011-2013 & restarted 9/14/15), last transfusion May 2011. On Promacta now. Needing a double lung and stem cell transplant.
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