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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.

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Replies to "I have been DXed 2 years and on the search the first year of Pf or..."

Nancy, Congrats on getting into the study trial. Is this the trial you're referring to
Evaluate the Safety and Efficacy of FG-3019 in Patients With Idiopathic Pulmonary Fibrosis https://clinicaltrials.gov/ct2/show/NCT01890265

You asked "has anyone made a major move from one COE to another?" By COE, I assume you mean Center of Excellence. To participate in the trial, do you have to change medical centers?
When do you start the trial? I hope you'll keep us posted on your experience.

@nancyligon Congratulations on your acceptance into the trial but even more so, congratulations for the attitude you have developed regarding your health and life. It's wonderful that you swim (I love to exercise in the water as well) and I'm delighted that you say, "together we are strong." While I don't have lung problems as you do, I have a paralyzed vocal cord and work to keep my vocal cords strong with expiratory muscle strength training, speech therapy, etc. Yes, please keep us posted as you enter the study and let us know how you are doing. Mayo Connect is a great way to share your journey with others. We will cheer you on! Best wishes, Teresa