I have had breathing difficulties for a few years now. Last year i had an open lung biopsy and the result was this diagnosis. Finding information on my condition is nearly impossible as it's so rare. All i do know is that it is idiopathic and i am going to need a double lung transplant. From the information i've been given, i'm in the 3rd stage of the disease. I am just really hoping someone out there has had a similar experience, how they've coped with it and if anyone has had a transplant before that could help me find a positive perspective on all this
Last edited by Matthew1976
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