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How are you?
Hi Lou, just wanted to check in with you & see how you're doing? I'm back on Danazol, alternating 100 mg with 150 mg everyday. I also cut down on the NAC from 600mg TID (3xday) to twice a day because my acupuncturist said the TID was making my kidneys/liver work too hard & I def don't want to do anything to make liver cirrhosis pop up. The pulmonary fibrosis was exacerbated last year by me inhaling construction dust for 5 mos, I was hospitalized, & am on SS disability now, needing oxygen at night & when working out. I'm happy & as healthy as one can be though, was wondering how you are & wanted to check up on you  . Drop me a line & if your on Facebook, I am too! Linda
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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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