Guest guest Posted June 6, 2008 Report Share Posted June 6, 2008 Last evening was my first time doing the Thursday evening chat. I want to tell everyone just how helpful this was for me. I have never "talked" to anyone else who is suffering from this terrible disease. Well, a couple at rehab, but just a passing conversation. Neither person wanted to talk very long or in-depth, perhaps in denial??? Thank you all for your welcome - Beth, Peggy, Lou, Jane, Mama Sher (was there last evening, but all too briefly!). I hope to be able to contribute more as I get better acquainted with everyone. As I said last evening, I am a TEN year survivor of this disease (NSIP). I've mostly done this by hit and miss technique. I know you learn how to LIVE with the disease from other patients. Already, I've learned several things from the rest of you on the board. I was diagnosed in SO CA, moved to Texas, evaluated for a transplant at Southwestern Univ of Texas in Dallas in April 2000 (but declared too healthy at that time), moved to near Knoxville, TN, in Dec '2002 and go now to Vanderbilt in Nashville. After having pneumonia a couple of times in Feb and March of this year, I've taken a downturn and now may be faced whether to once again be evaulated for a transplant in the fall. Your input will greatly help in my decision. Perhaps, though, with work/time/rehab I will once again respond to the upping of Prednisone and be able to avoid the decision. Sherry , NSIP '98, Bronchiectasis, Pulmonary Biliary Cirrhosis (autoimmune disease) and mild Pulmonary Hypertension '2008 Quote Link to comment Share on other sites More sharing options...
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