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Old Sun Jun 8, 2014, 04:45 PM
Robi1Knobi Robi1Knobi is offline
Join Date: Mar 2007
Location: Austin, Texas USA
Posts: 98
Pulmonary fibrosis worse, Aplastic Anemia better

Bad news: pulmonary fibrosis has gotten worse, but not sure its new job related (new environment, construction in building for mos, & stress exascerbated), or the fact that I've had 4 respiratory illnesses this year (3 between Jan-March (flu twice) and another now which required hospitalization June? I've started on inhalers this year, had 2 medrol packs, oxygen at night & prn.

Good news: Haven't needed 1 blood transfusion since I started the Danazol protocol & came off of it. Platelets are still low, but not low enough to need a transfusion. I'm going back to NIH in August, how're the rest of you?
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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