Connect
← Return to Stem cells for Pulmonary Fibrosis
Discussion
Stem cells for Pulmonary Fibrosis
Lung Health | Last Active: Aug 27, 2021 | Replies (40)Comment receiving replies
Hello, I'm not sure how much your read on "Dr Google" (love that term!) but here is info from Mayo:
https://www.mayoclinic.org/diseases-conditions/pulmonary-fibrosis/diagnosis-treatment/drc-20353695
Here are some suggested questions for your pulmonologist that may help you decide whether (s)he is a good person to treat you: https://pulmonaryfibrosisnow.org/2018/07/10/pulmonary-fibrosis-14-questions-to-ask-your-doctor-after-a-diagnosis/
Pulmonary fibrosis would be classified as a rare disease, as it affects around 150,000 people in the US, or about 5/10,000. In contrast about 25 million, or 750/10,000 have asthma. So while it would be unusual for a pulmonologist to see a lot of patients with PF, many in smaller markets or mining areas may see it fairly often.
By the way, to me, all drugs sound scary. In your place, I would be interested in exploring all non-drug options like supplemental oxygen and exercise too.
I would like to hear what you learn at your appointment, and whether tou decide to keep your doc, or get a recommendation for a new one.
Sue
Replies to "Hello, I'm not sure how much your read on "Dr Google" (love that term!) but here..."
Hi Sue,
I saw my new doc at Duke yesterday and, on balance, it was a good experience. With several years of old CT scans and PFTs, he thought I was still fairly mild, but declining. How soon? How far? Who knows? He started me on OFEV. For me he thought it was preferable to the other one. Even with your helpful tips on dealing with the side effects, I wasn't at all enthusiastic. But I was out-voted two to one. (My wife went with me.)
The plan is for me to have a PFT every three months--alternating with my pulmonologist here in Asheville--and have a CT scan annually or sooner if needed. I'm okay with that and hope my local pulmonologist will be too. I haven't broken the news to him yet.
Thanks again for your help.
Bob
Connect
Sue,
I appreciate your thoughtful, detailed response. I’d happened across the Mayo piece some time ago, but the "14 questions to ask" was new to me. It’s exceptionally helpful. (I was startled to learn that 90 percent of the fibrosis patients have GERD. I have it big-time.)
I’ll see my pulmonologist a week from Thursday in Asheville where the only thing we mine is tourist dollars. My uncle, a coal miner in West Virginia where I grew up, died of black lung. My family doctor has referred me to the Duke Lung Clinic in case a second opinion is warranted, and it probably will be.
I’ll let you know what develops. Thanks for asking. And thanks for helping get oriented to and get started on whatever’s ahead.
Bob