Connect
← Return to What to do when pulmonologist is passive?
Discussion
What to do when pulmonologist is passive?
MAC & Bronchiectasis | Last Active: 5 hours ago | Replies (32)Comment receiving replies
@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?
Replies to "@scoop It might not be "rare" in prevalence, but treatment knowledge and experience does not seem..."
@sueinmn absolutely. It is incredible how few pulmonologists have the treatment knowledge and experience to treat BE well, even where they had the wherewithal to include in differential. The treating WELL part is really lagging. As someone who is part of a very large HMO, I had to go elsewhere for that expertise (and pay out of pocket) and I can tell you that the difference in expertise between my very large HMO and the designated care centers for BE/NTM (I have been to two) is significant! My experience has made me a huge advocate for the designated care centers.
Connect
@sueinmn
Holy cow. Yeah. I couldn’t agree more. When this all started in me over 25 years ago, NJH in Colorado was our only hope and even they were in a discovering phase.
And so much has changed since then. An experienced Dr is so important. Like when battling cancer, I wanted someone with experience because protocols, medication, our responses are all so different. I’m taking all of your advice and going to find the best fit for my situation. Hell, it could be cancer. He’s not even doing another cat scan until July. But I genuinely don’t think it is or I would be on the phone with my oncologist, lol.
Thanks again. All of your voices, advice and experience matters. I’m, again, just so thankful for this group