Joe
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There are 3 PFF Care Centers in Florida. Two of them are within 3 hours of Polk County Florida. These PFF Care Centers are the best in the country for pulmonary fibrosis: https://www.pulmonaryfibrosis.org/researchers-healthcare-providers/community-engagement/care-center-network
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I would like to thank everyone for their thoughtful input. It really helps. Thank you!
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Jon,
Thanks for your response and here is an update. I am learning all this from a fire hose. The FEV/FVC was 98% so I read it wrong. The 74 was the recording but for my age, it was 98% so everything appears to be normal or above normal for a 58 year old who exercises everyday. I do have my appointment at Duke Pulmonary Clinic on August 11th. It was actually September 15th but I kept calling and picked up a cancellation.
They are having me do another PFT and a 6m walk which should be fun since I can still run an 8 minute mile. So, I am praying very hard that I receive some positive guidance upon my visit. My view on this after hashing and rehashing over and over in my head is that it is more likely I have had this for years vs. catching it on a calcium score scan coincidently at the exact time when I am 58 that it is something that is progressing. The original day I found that my pulmonologist stated I had pulmonary fibrosis I bought a very good spirometer with a 3L syringe and the readings for the last 7 months have not changed at all. So, I’ll let you know what the doctor says at Duke in August. Take care!
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Jonathan,
That has been one of the most detailed explanations I have had and is extremely astute based on all the reading I have recently done. Wouldn’t it be nice if my pulmonologist would have stated exactly what you had stated? First time I saw him, he wrote that I had asymptomatic pulmonary fibrosis. I was sent for an ILD panel after that and the panel came back negative. I then met with him and read his notes and he put me down as idiopathic pulmonary fibrosis which is why I turned to the forum. He may not have revisited my notes or whatever and always seems to be very busy. The PFT that you had asked about had FVC 122%, FEV1 120% and FEV/FVC of 74. My DLCO was 107%. You may know this but why would he have put me down as ipf based on minor scarring without honeycombing or bronchiectasis, excellent PFT, no history of drugs or asbestos, etc., and negative ILD panel? Did he use that instead of the week previous diagnosis of asymptomatic fibrosis because he doesn’t know where the scarring came from? If so, I assume there are different meanings of idiopathic pulmonary fibrosis? I appreciate any of your insight and thank you so much for responding previously.