What to do when pulmonologist is passive?

@snoei I was not too diligent about replacing mine either, until about a year ago - I misplaced the old one, broke out the new one and the treatment felt "different." When the old one resurfaced a few days later as I unpacked, I tried them side-by-side, on the same setting. The new one required less effort to get the same vibration in my chest. So, now I am convinced that they are on to something. I don't know whether it is extended use or repeated sterilizing (I only do it once a week), but something changes the way the device works over time.

@bronchiectasaurus I can't thank you enough for your encouragement and kind words. I called the closest clinic, which is about 3 hours east of me in Charleston, SC. They said my pulmonologist had to refer me. I think I will see if the PA will do that for me. I have literally seen the pulmonologist once, for about 20 minutes.
Have the best evening. And again, thank you for your kindness. It genuinely matters.

Sunni

This is my first post but I may be able to help. I receive excellent care at the Bronchiectasis Care Center at UNC in Chapel Hill. We travel from Virginia, about 200 miles each way, a couple of times a year. The team is outstanding. Good Luck

Thank you all so much. UNC requires dr referral. I made an appointment for Dr Colin Swanson at Emory….DECEMBER 31st, lol. I asked if I could be put on a cancellation list and they said ok, however unlikely.
So I’ll try to get referral next week from nurse practitioner at pulmonologist office, and also a prescription sent for an OPEP.
Y’all have literally saved me and I can’t thank you all enough

@scoop It might not be "rare" in prevalence, but treatment knowledge and experience does not seem to be increasing as fast as one would hope.

Like you, I hope that "..."theoretically more pulmonologists will become familiar with the disease and include it in their differential diagnosis...'' I plan to talk to my pulmonologist about how she/we can help advance knowledge and recognition. With the use of diagnostic tools, there should be a way to get there.

But once recognized, the key is to be current with best practices & treatment protocols. My Fear is the recognition may be there, but the people with up-to-date skills will not.

Just to get a picture of totals, based on numbers from the Lung Association, the Asthma and Allergy Foundation, and bronchiectasisinfo.org:
Bronchiectasis 600,000 people (based on increasing awareness/diagnosis) or .18% of people,
COPD 11,100,000 or 3.3% of people, and Asthma 28,200,000 or 8% of people
That means the pulmonologist is 18 times more likely to see people with COPD and 450+ times more likely to see people with Asthma than people with Bronchiectasis.

Where will their treatment knowledge and expertise be the greatest?

Thank you all so much. UNC requires dr referral. I made an appointment for Dr Colin Swanson at Emory….DECEMBER 31st, lol. I asked if I could be put on a cancellation list and they said ok, however unlikely.
So I’ll try to get referral next week from nurse practitioner at pulmonologist office, and also a prescription sent for an OPEP.
Y’all have literally saved me and I can’t thank you all enough

@sunnirivers Dr. Swenson has a podcast on BE/NTM that is fabulous. NTMTalk. Honestly, he seems like the BEST. A 6 month wait at the designated care centers is pretty standard. I have gone to two (out west) and in both cases it was a 6 month wait for my initial appointment. Cancellations do happen, but are pretty rare. When you’ve waited 6 months for an appointment, you tend to make it, come hell or high water. Dr Swenson is speaking at next week’s NTM conference hosted by NTMir, which you can still sign up to attend virtually. (https://connect.ntminfo.org/events/event-description). If you can get in earlier at UNC, worth doing so, but honestly I think I would still see Dr Swenson, if only for another opinion ( if you can swing it). If he weren’t so far away from me (literally opposite coast) he would be top of my list.

Thank you all so much. UNC requires dr referral. I made an appointment for Dr Colin Swanson at Emory….DECEMBER 31st, lol. I asked if I could be put on a cancellation list and they said ok, however unlikely.
So I’ll try to get referral next week from nurse practitioner at pulmonologist office, and also a prescription sent for an OPEP.
Y’all have literally saved me and I can’t thank you all enough