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Environmental causes of bronchiectasis?

MAC & Bronchiectasis | Last Active: Dec 3, 2024 | Replies (20)

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@lvnl

It seems the experience and expertise are so widely variable and in my experience, even in the same hospital system. I was diagnosed with BE 12 years ago from my PCP hearing something in my lungs, sending me for a chest x-ray which was inconclusive with the radiologist recommending a CT scan where the mild BE with nodules showed up. However, my PCP told me it was "idiopathic" and nothing needed to be done since I was asymptomatic. Just repeat CT scans every 6 months for 2 years to make sure the nodules were stable (which they were). Eventually when I was diagnosed with Crohn's disease which is associated with BE, I started also going to a general pulmonologist to track the BE more closely. But, nothing was done until I started developing a chronic dry cough. My (now new) PCP was persistent in not letting that go (thank you!) and eventually I ended up at the NYU Bronchiectasis & NTM program. Eventually a CT reading said "consistent with MAC". The general pulmonologist sent me for a series of induced sputum tests which were negative (but also very small samples, I was barely producing anything then). But guess what? My previous PCP and general pulmonologist were also part of the same large NYU system here in NYC, a top hospital nationally, and although caring and highly competent overall, they were not proactive about the BE at all. I had no idea until my GI doctor was one who referred me, that there was a bronchiectasis program in the very health care system that was taking care of me. I believe I was either percolating NTM for a while, or was infected around the time I finally ended up with bronchiectasis-knowledgeable doctors because when they sent me to chest (respiratory) therapy and I started producing more sputum, it has been positive every since.
I have no idea how to understand such a wide divergence in knowledge in the profession. It seems that it's doctors who "take an interest" who end up educating themselves and each other and that's pretty random!

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Replies to "It seems the experience and expertise are so widely variable and in my experience, even in..."

I've read that there was quite some increase in BE knowledge
in the last decade with BE-databases being set up.

Doctors typically "take an interest " in conditions they encounter more than once. BE and NTM are rare, and most PCP's very rarely see it. Most pulmonologists encounter at least 100 COPD and 100 asthma patients for every case of BE they see, maybe more. My first pulmonologist had only encountered 27 cases of NTM in 27 years in a large urban practice. It doesn't surprise me that there are few experts.

I have said and believe as you do also....and I am sure many of us that come to this site, due to our experiences with needing the right care and diagnosis of BE and MAC, have come to this conclusion....that which you said: "It seems that it's doctors who "take an interest" who end up educating themselves and each other and that's pretty random!
Barbara