Hi Michael. Once I had a true diagnosis, I told my kids individually because it is hard to get everyone together. I felt that they needed to know and they also know that I have always told them if I had procedure that was to be done and since this will impact them a lot, it was very important to me that they know what is going on. Then they…

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Treprostinil

I did trial for a drrug that stops the progression. I was very happy to participate and after the year, I got on the guaranteed real drug. I have been on the real drug for about 3 months now and everything is good. I would urge anyone that has the chance to get into a trial. As another participate said, you have nothing to lose. But in my…

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Steve, I can attest to that. I got Pneumonia in December and it took 4 rounds of antibiotics and a round of Prednisone to get me back on tract. But, in that time I lost 14% of my lung capacity. I was in a trial and doing well with stable lung capacity. I went in for my last appointment in a trial I was in for a drug that STOPS the progression…

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Mine happens on and off. It usually doesn’t last very long then I am back to normal. Still haven’t figured out what the trigger is and I have been on it for 2 years now

I had a Pulmonologist that I didn’t like and he didn’t do much for me and said my lungs had “scarring” from my many bouts of Bronchitus. So I stopped seeing him for 4 years. Then I had issues with shortness of breath so I went to a new Doctor. She did more for me than he did in the 5 years that I saw him. Then told me, “But I can’t help you”.…

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My wife was diagnosed with Sarcoidosis in 2014 but hers started in her left Eye and took her sight in that eye. She has no symptoms of IPF since she knows full well what IPF is and the symptoms. I was diagnosed with IPF in about 2012 but was told it “went away” a few years later. I didn’t like the doctor so never went back. Finally, I was…

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I am living my life to the fullest. I was diagnosed 13 years ago but never got told exactly what I had until I asked for a new doctor because I had not been to mine for 5 years because I didn’t like him and I was having some breathing issues. That was a year ago and I got hit with the reality of what I had. But, I was NOT given any time frame.…

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I started out having Pneumonia 3 and 4 times a year with hospitalizations. I finally saw a pulmonologist in 2013 and was told I had PF. I was not offered anything at all. Then, about 3 years later, I was told that it went away. He sai he had never seeen that before but it had gone away. Then in 2022, I was having shortness of breath on… Read more