Guest guest Posted January 17, 2006 Report Share Posted January 17, 2006 I am new to this group....I am 54 and have been on oxygen for over a year. I have a severe curvature of the spine and have been somewhat short of breath for years....never smoked....but when my shortness of breath got worse, I went for testing and was diagnosed with pulmonary fibrosis...I was seeing a pulmonologist at a lung center who told me that although I had pulmonary fibrosis, it was not the main problem and was stable....recently, I went for a second opinion and this pulmonologist says that I have PF, probably idiopathic. He sent me for another PFT and CT scan. I get really winded just doing the least little thing. I will go back to the physician who ordered more tests in about a week...I'm really terrified about everything I read about IPF....doesn't seem to be anything that can be done...my doctor talked about prednisone as an option....and another drug that is $50,000 a year....he said he does have a patient on it that is paid by their insurance....I can't even get approved for an electric wheelchair so I can get around!! So, I decided to join this group and see if I can learn more...I was a pediatric nurse for 25 years before this and took care of many children with cystic fibrosis....but I never heard about PF until I was diagnosed. --Diane Quinlan dianequinlan@... Quote Link to comment Share on other sites More sharing options...
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