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Stem cells for Pulmonary Fibrosis

Lung Health | Last Active: Aug 27, 2021 | Replies (40)
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@robtlhughes

I'll see my pulmonologist next week. What should I ask him? After five or six years of being monitored for my slowly deteriorating lung condition--coughing, throat clearing, two or three bouts of out-patient pneumonia--I've been diagnosed with pulmonary fibrosis. Idiopathic? I don't know. According to Dr. Google, it's mild--for now. I think I'll be asked to start an anti-fibrotic. But which one? Both Olev and Esbriet sound scary. Is the medical cookbook for this disease something any decent pulmonologist can follow, or is it necessary to go to a teaching hospital? I'll be 80 in December and am in generally good health, but I do have low platelets and several other conditions not uncommon for my age.

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Replies to "I'll see my pulmonologist next week. What should I ask him? After five or six years..."
Sue, Volunteer Mentor | @sueinmn | Aug 15, 2021

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

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