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PPFE revisited

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aussiemichael
aussiemichael

I got diagnosed with Pleuroparenchymal fibroelastosis (PPFE) following a lung biopsy about 18 months ago. Yes it is a rare condition and idiopathic. There is not a great deal of medical reports/research into this - I am the first they have seen in my State. There has been a slow decline and then a drop in my lung capacity, oxygen levels etc. No one has been able to give me a prognosis, and I am currently going through testing and assessment to determine if I am suitable to be placed on the "list" for a double lung transplant - which I discovered that PPFE can develop in transplanted lungs. Any idea of recent research/articles on PPFE would be most welcome. From what I have seen on the net, most are case studies. Thank you!

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