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Old Sat Nov 14, 2015, 02:33 AM
Robi1Knobi Robi1Knobi is offline
Join Date: Mar 2007
Location: Austin, Texas USA
Posts: 98
Not doing good, be careful!

I inhaled some construction dust at my job last year, and it exacerbated the pulmonary fibrosis and I've been hospitalized twice for pneumomediastinum. At NIH in August, Dr. Young told me that I now need a double lung transplant, and later a bone marrow transplant. I had to get started on Promacta because my platelets were slipping down to 20's, even with staying on Danazol. Please be careful everyone, don't let this happen to you. I think I may die from this...
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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