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I am recently diagnosed with PPFE in Australia. I was told that 60% of my lung capacity is already reduced and I may need a transplant in next 5 years. Doctors believe it could be due to some autoimmune condition - exact autoimmune disease currently they are not sure about. It all started with patchy lungs and recurring pericarditis and heart inflammation episodes. I did lot of reading and seems it is idiopathic disease which mostly end up with lung transplant. To be frank I am bit worried with the thought of transplant. Doctor had given me a timeline of 5 years as of now. Anyone else facing same situation - just hopeful if people faced decline in lung damage over course of time. I am also open for suggestions about PPFE specialist and hospitals in Australia.
Thanks - Redsheep.
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