Guest guest Posted September 29, 2009 Report Share Posted September 29, 2009 I've been diagnosed with pulmonary fibrosis and associated with dermato myositis an auto-immune disease. My problem is that I don't really wanna have lung transplant but my doctors are going to that path anyway. I feel a lots of pressure from my doctors and I'm in constant pain with all my muscles and joints. I'm just worried that I'm maybe getting worse too. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted September 30, 2009 Report Share Posted September 30, 2009 Tess, Good morning and welcome to Breathe Support! I'm glad you found us though of course I am sorry that you had reason to look for a group like this. I hope that you can find some of the information and all of the support that you are looking for. My name is Beth and like you I have pulmonary fibrosis (specifically fibrotic NSIP) and was diagnosed almost a year ago with dermatomysitis. It sounds like you are having a thoroughly miserable time of it and I'm sorry about that. What are they doing to treat you? Any meds? oxygen? Everyone here understands how demoralizing this diagnosis is and how difficult it is to navigate the medical system and make sure your wishes don't get swept aside. I share your ambivilance about lung transplant. I'm not at a point yet where it's something that I've had to make a decision about. First of all I need to lose weight and secondly I've remained relatively stable. It's given me the luxury of putting the decision off. I do know that I can't do that indefinitely. Where do you live? I'm in Durham NC and I receive my care at Duke. Please tell us more about you. We look forward to getting to know you! Beth Moderator Fibrotic NSIP 06/06 Dermatomyositis 11/08 To: Breathe-Support Sent: Wednesday, September 30, 2009 1:32:22 AMSubject: Pulmonary Fibrosis I've been diagnosed with pulmonary fibrosis and associated with dermato myositis an auto-immune disease. My problem is that I don't really wanna have lung transplant but my doctors are going to that path anyway. I feel a lots of pressure from my doctors and I'm in constant pain with all my muscles and joints. I'm just worried that I'm maybe getting worse too. Quote Link to comment Share on other sites More sharing options...
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