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Posts (4)

Jul 19, 2016 · HRCT in Lung Health

I have been DXed 2 years and on the search the first year of Pf or IPF. A lung biospy was the protocol and proved out the Dx. I have been on ofev for a year. And was accepted into Fibrogens safety trial for 3109 My numbers are not great and general health is good ,Doc numbers are dropping. I swim 3 times a week and it is wonderful, almost never out of breath….has anyone made a major move from one COE TO another? I hope I can be a part of the solution with this study. Together we are strong.

Jul 19, 2016 · Pulmonary Fibrosis* in Lung Health

Hello. Yes our lives have changed but we know our devil so to speak…. I understand the resistance to 02 but have decided to feel better than worse. I don’t get to mow my grass but I can sit and pull reeds ( very therapeutic) are you on Ofev? Remember the musical Godspell. Day by day Memorize those words my IPF friend.

Jul 16, 2016 · Pulmonary Fibrosis* in Lung Health

Hi Terries. You mentioned your husband was DX 2011. What treatment has he been on. I was DX in 14 and on Ofev(1 year) 02 24/7 2lts and swim 3 days a week… It’s important to ex cerise and get the 02 his body needs. How are you? Hang in caregiver he needs a strong you too…..

Jun 30, 2015 · I was Dxed with IPF 2014. in Transplants

Hello All. My name is Nancy. I was Dxed with IPF 2014. I know am going to go thru the process of being placed on transplant list . I am hoping I can get advice from the get go on this .Afraid and stupid and otherwise in good health ( end stage lung disease in right lung) 61… Help. What can I expect?