Guest guest Posted August 28, 2009 Report Share Posted August 28, 2009 I was diagnosed Oct 20 '08. 4 years ago i lost 30 lbs in 30 days & started a nagging dry cough. They misdiagnosed me with asthma...It wasn't unitl i went on a trip to Columbia 2 years ago that i felt the severe tightness of chest & shortness of breath. That's when i knew something was really wrong...especially when i had trouble just showering. I finally go referred to a lung specialist & on my 1st visit he wanted to send me straight to the hospital. His suspicion of PF-UIF was confirmed after he convinced me to have a lung biopsy done a few days later. What should of taken 1-3 days, ended up being a 26 day stay with 4 surgeries...the doc's told me that everything that could go wrong did. My lung collapsed twice, & they found a leak & did actual lung surgery on one of my lungs. I blew up like a 300 pound person-of which i weigh normally 115 pounds. Here i am almost a year later & still recuperating. I am so thankful to be alive & i would like to share my story. MY lungs are equally bad 12.5 % with total of 25% working so our next step is to put me on lung transplant list asap. I am 42 years old & praying for a miracle! I would like to start a PF support group in San -i was told there isn't one here. Any suggestions? My next step is to call PFF & speak to Leanne to help! Love you guys! You are so brave & thank you please keep sharing! Quote Link to comment Share on other sites More sharing options...
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