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What to do when pulmonologist is passive?

MAC & Bronchiectasis | Last Active: 1 hour ago | Replies (22)

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Profile picture for Sue, Volunteer Mentor @sueinmn

@sunnirivers I am glad you are finding our group and the information here helpful. In our health journeys, I think we have all encountered less-than-helpful practitioners, and switching often takes a lot of time, energy and even money.
However, bronchiectasis and NTM are rare conditions, seldom encountered by many general-practice pulmonologists so we are left to search. It took me almost 4 years find my current awesome team and get an appointment - even though they were part of my same clinical system! If I were you, I would try to get a referral to the clinic in Charleston - it the PA goes to bat for you, most likely the pulmonologist will make the referral. If not, ask your primary provider to do it (this shouldn't require a visit - just a phone call.)
Good luck, and please return to us with many questions you may have.

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Replies to "@sunnirivers I am glad you are finding our group and the information here helpful. In our..."

@sueinmn Thank you so very much! 4 years, oh my gosh, I can't imagine feeling this uncomfortable for 4 years. I am so very sorry for your journey and grateful you found someone a team to help you. I am going to manifest the same!

@sueinmn
Not to split hairs or raise a red flag but Bronchiectasis is no longer considered a rare disease.

"Previously classified as a rare or orphan disease, bronchiectasis has now been reported at rates up to 566 per 100,000 population with a prevalence that has increased 40% in the past 10 years." [2018]
https://pmc.ncbi.nlm.nih.gov/articles/PMC6173801/
This is good news for all of us. As BE becomes more common and more widely recognized, theoretically more pulmonologists will become familiar with the disease and include it in their differential diagnosis.