Guest guest Posted June 7, 2008 Report Share Posted June 7, 2008 Hi Sherry, I was reading your "bio" to Peggy. Your disease has followed much the same course as mine. I am almost 64, I was diagnosed at 52. At that time they said Pulmonary Fibrosis secondary to Connective Tissue Diseases, primarily Lupus. I had open lung biopsy. My docs now tell me that the pattern on that biopsy looks more like UIP than any other form. Anyway, I developed Bronchiectasis. For me, it is the worst part. I have so much mucus and have to work so hard to keep my lungs clear. I see that you have PAH, so do I. Just diagnosed within the last six months. It is in the severe stage and I have to take a drug Flolan through a main line in my chest. I am so glad that I have survived so long, but the battle is becoming so hard. Some days it is just overwhelming. Do you ever feel the fatigue of it all? I was turned down for transplant because of an autoimmune blood clotting disorder. And some heart problems. So, I just keep taking all the meds and praying for one more day. God has granted me many of those days and I am thankful. I am glad you are here. We learn so much from one another. Hugs, Joyce D.Pulmonary Fibrosis 1997 Bronchiectasis 2004 Pulmonary Hypertension 2008 Mixed Connective Tissue Disease (Lupus, RA, Sjogren's, etc) Rejected for Transplant 2006 .....I will not forget you. Behold, I have engraved you on the palm of my hands. Isaiah 49: 15-16 Quote Link to comment Share on other sites More sharing options...
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