Which specialists do you see for MAC with Bronchiectasis?

Posted by yaduhyaduhsquawk @yaduhyaduhsquawk, Apr 10 9:59pm

Which specialists do you see for MAC with Bronchiectasis?
I have been seeing a pulmonologist. Because I am fortunate to live in an area with a nationally recognized medical facility I figured I would get a second opinion for treatment with an Infectious Disease specialist. Ugh! They have opposite opinions. Just wondering what the general consensus of our group’s health care provider/s are. Pulmo or ID?

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payette78 | @payette78 | Apr 11 9:07am

I have an appointment to see an ID specialist for medications decision on mycobacterium abscessus. Also have bronchiectasis. Pulmonologist diagnosed and is handling everything but medication, I think. Not sure who is the lead. Curious as to what the opposite opinions were.

Sue, Volunteer Mentor | @sueinmn | Apr 11 5:09pm

@yaduhyaduhsquawk That's quite a conundrum. My initial pulmonologist "fired" me because I saw and ID doc - said I was second-guessing him. My ID doc referred me to a pulmonologist with whom he worked as a team - that was wonderful while I was on the meds. My newest (and BE/MAC expert) pulmonologist is managing my care with her pulmonology partner as the ID doc has left the group and was not replaced.

I will give you my take - for my lungs, a pulmonologist is the best, able to understand how Bronchiectasis, MAC and Asthma interact. Also, because medication is just one piece of the treatment plan, and the ID doc knows less about airway clearance, exercise, related diet/appetite/weight issues, if I had to choose between the two, I would be inclined to go with pulmonology.

There is another choice - be your own best advocate, fist ask if the doctors can consult with one another. If that's a "No" ask each doctor why their preferred protocols differ. I did exactly that when the pulmonologist and ENT gave me differing opinions on nasal irrigation (since part of my issue is sinuses) and found the pulmo was more current in her knowledge.

Do you have a sense for which doc is more experienced in treating not only MAC, but BE?

steph139 | @steph139 | Apr 12 7:07am

In reply to @sueinmn "@yaduhyaduhsquawk That's quite a conundrum. My initial pulmonologist "fired" me because I saw and ID doc..." + (show)

This is great advice for Bronchiectasis & NTM patients. I learn more through support groups than from doctors especially which questions to ask. Another great support group is through the American Lung Assoc / NTM/ BE.
This is not an easy path - we need all the support we can get - Thank you!

yaduhyaduhsquawk | @yaduhyaduhsquawk | Apr 12 12:37pm

In reply to @payette78 "I have an appointment to see an ID specialist for medications decision on mycobacterium abscessus. Also..." + (show)

@payette78
Thank you for your response. I do want to reply to your curiosity. Just need some time. Honestly….ruminating on the conflicting info has caused me quite a bit of distress and I need to some time to process it. 🫨

yaduhyaduhsquawk | @yaduhyaduhsquawk | Apr 12 12:40pm

In reply to @sueinmn "@yaduhyaduhsquawk That's quite a conundrum. My initial pulmonologist "fired" me because I saw and ID doc..." + (show)

@sueinmn
Thank you Sue! Very helpful comments. See my reply to @payette78 about.

payette78 | @payette78 | Apr 12 1:32pm

In reply to @yaduhyaduhsquawk "@payette78 Thank you for your response. I do want to reply to your curiosity. Just need..." + (show)

I totally get it. This is all overwhelming to me. Feeling so not in control. No need to respond at all if it's too much. So sorry you're going through all of it.

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