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Old Mon Feb 20, 2012, 01:00 PM
Robi1Knobi Robi1Knobi is offline
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Join Date: Mar 2007
Location: Austin, Texas USA
Posts: 98
back from NIH

Hey guys! I had a good NIH visit Feb. 14th. I had a half-day of testing that included an Abdominal (abd) & also a transvaginal (violated!) Ultrasound (us). This was my 3rd time for them to get the abd us, since I didn't have enough urine in my bladder the last 2 times. I chugged water from 7-9am (3 bottles) and they got it this time ). My hgb was 10.1, hct 37, wbc 2.7, platelets 52 (decreased from 70's since last month). I did have a bladder infection last month, maybe why my platelets went down 20 points? It was a good visit and the docs gave me 2 thumbs up . I have to go back in 6 mos (August?) and have another BMB then. After my NIH visit, I met my hubby at IAD and we flew to NYC together, to do something on my "wish list". We spent 5 days close to Chinatown & Little Italy, and did most of the touristy things I've always wanted to do. I hope some of you are able to do things on your "wish list" too. Who knows how long we will feel good on Danazol? Dr. Dimitriu said that I could still be on Danazol after the study, so that was encouraging. However, I think it costs boocoo's of dollars. Anyway, those of you feeling good go have some fun!!
Cheri, you are having a rough time right now, I hope you find the cause of your decreasing numbers & kill it! Keep us posted, I feel like we are all holding each other up
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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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