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Resources for The ABC's on Bronchiectasis and MAC (NTM)

Posted by Sue, Volunteer Mentor @sueinmn, Sep 8, 2023

When you are first diagnosed with Bronchiectasis or MAC, chances are you never heard of it before. And the brochure from the pulmonologist's office - if you get one - isn't much help, and can be downright scary, right? Both of these are rare diseases - bronchiectasis affects perhaps a million people in the US, and MAC or NTM maybe 100,000 (17/10,000 (.17%) of the population and 3/10,000 (.03%) respectively. Many doctors, even pulmonologists, have never or rarely seen a case.

So you do what anyone does in 2023 - jump on the computer and "Ask Google" - where you find all kinds of scary stuff, and not a lot of detail. Chances are that's how you found Mayo Connect.

We have so much info, and so many discussions, that's it is hard to find the basics.

So here is a list of places you can find a concise description of diagnosis, treatment and terminology, and some of the basics on airway clearance, which is so important to our healthy:
https://www.lung.org/lung-health-diseases/lung-disease-lookup/nontuberculous-mycobacteria/learn-about-nontuberculosis-mycobacteria
https://www.bronchiectasisandntminitiative.org/
https://www.ncbi.nlm.nih.gov/pmc/articles/PMC5478409/

Interested in more discussions like this? Go to the MAC & Bronchiectasis Support Group.

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pacathy | @pacathy | Oct 20, 2025

Here's the 5 year outcome from early enrollees of the US NTM AND Bronchiectasis registry that I think many of are now part of. It shows some hopeful info.
https://www.atsjournals.org/doi/10.1164/rccm.202307-1165OC

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reneemc | @reneemc | Oct 23, 2025
In reply to @pacathy "Here's the 5 year outcome from early enrollees of the US NTM AND Bronchiectasis registry that..." + (show)
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Here's the 5 year outcome from early enrollees of the US NTM AND Bronchiectasis registry that I think many of are now part of. It shows some hopeful info.
https://www.atsjournals.org/doi/10.1164/rccm.202307-1165OC

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@pacathy terrifying

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pacathy | @pacathy | Oct 23, 2025
In reply to @reneemc "@pacathy terrifying" + (show)
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@pacathy terrifying

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@reneemc I'm sorry! I found it had rays of hope. I'll respond in another thread to keep this for resources rather than discussions.

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Sue, Volunteer Mentor | @sueinmn | Nov 6, 2025

Here is another, excellent, plain language resource for people with Bronchiectasis:
https://europeanlung.org/en/information-hub/lung-conditions/bronchiectasis/

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alicebrew1 | @alicebrew1 | Jan 17 6:11am

Can anyone tell me what inhaler they take ? Do you take it everyday? Also do you nebulizer the salt everyday? I’m alittle confused I have allergist saying asthma pulmonologist saying I have a patch of bronchiectasis . Taking trelogy everyday . Still cough up alittle mucus . Background dealt with haemophilus for 2 years . Going to drop off a sputum sample again to make sure it not back . Also get allergy shots and take Zyrtec every day

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pacathy | @pacathy | Jan 17 7:12am

@alicebrew1 I have bronchiectasis, but not MAC or other active infection. I have mild asthma and I use an Advair inhaler daily. (Doc wanted to change it, but insurance denied.) I have albuterol to neb or inhale. I had been using the neb daily followed by 7% saline nebs, but doc told me in October I could ease up a bit on airway clearance since I’ve been stable with no URI in a year-for first time in at least 20 years! He said to do it “a few times a week” and I’m still trying to figure out how much to do. I don’t want to rock boat too much, but have been crazy busy recently and it’s been nice to have a bit of extra time. If I don’t neb, I use the albuterol inhaler and do active deep breathing. Note: the Autogenic drainage coaching app is helpful for modeling how to do it. I do use the 7% if I know I’ll have my young grandkids or be in a crowded situation.
Good luck to you! I hope your culture is negative and your sputum clears soon.

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alicebrew1 | @alicebrew1 | Jan 18 8:05am
In reply to @pacathy "@alicebrew1 I have bronchiectasis, but not MAC or other active infection. I have mild asthma and..." + (show)
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@alicebrew1 I have bronchiectasis, but not MAC or other active infection. I have mild asthma and I use an Advair inhaler daily. (Doc wanted to change it, but insurance denied.) I have albuterol to neb or inhale. I had been using the neb daily followed by 7% saline nebs, but doc told me in October I could ease up a bit on airway clearance since I’ve been stable with no URI in a year-for first time in at least 20 years! He said to do it “a few times a week” and I’m still trying to figure out how much to do. I don’t want to rock boat too much, but have been crazy busy recently and it’s been nice to have a bit of extra time. If I don’t neb, I use the albuterol inhaler and do active deep breathing. Note: the Autogenic drainage coaching app is helpful for modeling how to do it. I do use the 7% if I know I’ll have my young grandkids or be in a crowded situation.
Good luck to you! I hope your culture is negative and your sputum clears soon.

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@pacathy thank you for this info . I know it’s so confusing . I have 2 Dr saying opposite things . My allergist just past away . So I’m going to start all over and just have pulmonologist take over care . I feel trelogy is to strong of an inhaler and I don’t want more damage . Never was offered the saline nebulizer. Going to ask about that . I have been doing air clearance . Any particular ones that work best for you

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lesleys56 | @lesleys56 | Jan 18 8:14am
In reply to @pacathy "@alicebrew1 I have bronchiectasis, but not MAC or other active infection. I have mild asthma and..." + (show)
Profile picture for pacathy @pacathy

@alicebrew1 I have bronchiectasis, but not MAC or other active infection. I have mild asthma and I use an Advair inhaler daily. (Doc wanted to change it, but insurance denied.) I have albuterol to neb or inhale. I had been using the neb daily followed by 7% saline nebs, but doc told me in October I could ease up a bit on airway clearance since I’ve been stable with no URI in a year-for first time in at least 20 years! He said to do it “a few times a week” and I’m still trying to figure out how much to do. I don’t want to rock boat too much, but have been crazy busy recently and it’s been nice to have a bit of extra time. If I don’t neb, I use the albuterol inhaler and do active deep breathing. Note: the Autogenic drainage coaching app is helpful for modeling how to do it. I do use the 7% if I know I’ll have my young grandkids or be in a crowded situation.
Good luck to you! I hope your culture is negative and your sputum clears soon.

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@pacathy what is the airway clearing?

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