Hello, Ling. My story with pulmonologists is kind of a long one. After my primary care dr diagnosed bronchiectasis in early 2016, I saw Dr. Tashtoush Basheer, and he was great! He did bring up the possibility of NTM, but after a follow-up CT scan showed a big decrease in inflammation, and I was not having any symptoms other than a cough, he said even if I had NTM he would not treat me at that point. But he moved to Florida and the person I was assigned to next denied I even had bronchiectasis. I requested a change and was given my current pulmonologist in 2019. He confirmed bronchiectasis, said "you might try nebulizing with 7% saline," which he prescribed, and also mentioned the huff cough. Instead of scheduling my next follow-up he said, call me if you need me." Without direction, I didn't find nebulizing terribly effective, and my cough would get a bit better and bit worse, but I was never sick-sick, so I didn't call until it was bad enough in 2022, that I did call, took 5 months to get an appointment. At that point, with the violent coughing, sometimes low-grade fever, and some green in my sputum, he ordered testing, CT scan (fist in 5 1/2 years, and did the bronchoscopy. My scan had not changed much, but the bronchoscopy turned up H-influenza and MAC. By the time the MAC culture came back I had been treated for H-influenza and was feeling SO MUCH better! Still the dr just said I needed to start on the Big Three immediately. I took him at his word, and was looking for support and answers to questions about life-style changes, when I found all this information from this group, NTMir and others, and learned that, at my level of disease, there are other options to the Big Three. When I told him I wanted to wait, he said, I'd have to have that treatment sooner or later. I told him I had seen a video in which Dr. Winthrop (whom I knew my dr respected as an authority) said this was an option, he gave me the referral. So, how do I like my pulmonologist? I am very grateful that he discovered the problem and know he was simply following recommended protocol, and he was nice enough to listen and to go though my CT scans image by image showing me the small changes, and happy to give me the referral, but like so many others in this group, find it frustrating that he seems to be aware, of only one track. I really like it that Dr. Basheer, laid out options, explained things instead of just giving me directions, and scheduled regular follow-ups. I mention his name in case anyone in Florida might come across him.
I have heard great things about Dr. Winthrop and OHSU, have already had a lovely email exchange from a woman who is seeing if it might be possible for me to see a respiratory therapist while I'm there. I am already feeling so much less like I'm stumbling in the dark.
More than you wanted to know, but like you said, I've learned so much from this group, and I think knowing one another's journey's helps when it's time to question and advocate for our care. All best to you.