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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.

Profile picture for pacathy
pacathy | @pacathy | Jan 18 10:22am
In reply to @lesleys56 "@pacathy what is the airway clearing?" + (show)
Profile picture for lesleys56 @lesleys56

@pacathy what is the airway clearing?

Jump to this post

@lesleys56
There are a number of techniques people use for airway clearance and people, with advice from their docs. Mine has changed since initially diagnosed. I went to Mayo thinking I had MAC lung based on CT’s and inadequate sputum samples.
They thought I had it, too, and while waiting the 6 weeks for cultures, they told me to do the following 2x/day:
Albuterol inhaler
Aerobika
Huff cough
Postural drainage
Huff cough and exercise 30”/day

I really didn’t get stuff up even with all this. When doc called with negative sputum results, I asked if I could cut back to daily and she ok’d it.
I’d been on wait list for appt at Penn and saw doc there 3 months later. He agreed daily would be ok. I also told him I had started getting reflux from postural drainage and had stopped it. He agreed.
I did daily nebs and airway clearance with albuterol nebs followed by either accapella or Aerobika or Autogenic drainage for about a year. I was also getting aggressive treatment for my post nasal drip.
In fall of 2024, Penn pulmonologist suggested I add 7% saline because I’d had frequent respiratory infections the prior winter. That really seemsd to help and I had no URI’s.
This past October, pulmonologist said I could do AC a few times/week. Note-I have great PFT’s and don’t bring up sputum. I would have to do more otherwise. If I get a URI, I’d go back to clearing 2x/day. As you see, needs changes as conditions change.

Here’s a video from National Jewish. https://m.youtube.com/watch

Sue has posted a list of Resources that are helpful if you have time to browse that post.

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2 replies
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pacathy | @pacathy | Jan 18 10:33am
In reply to @alicebrew1 "@pacathy thank you for this info . I know it’s so confusing . I have 2..." + (show)
Profile picture for alicebrew1 @alicebrew1

@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

Jump to this post

@alicebrew1 I wrote a long post to Leslie about mine. Now that we have my sinus under control, I don’t produce much mucus and never have. Most here who do produce sputum seem to use albuterol nebs, hypertonic saline 7% or 3 if 7 isn’t tolerated and Aerobikas and/or exercise then huff cough. It does vary with what people find works.
I’ve been very stable for a year. If that changes, I’ll increase AC to twice daily until better.
Good luck to you!

REPLY
1 reply
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lesleys56 | @lesleys56 | Jan 18 11:06am
In reply to @pacathy "@lesleys56 There are a number of techniques people use for airway clearance and people, with advice..." + (show)
Profile picture for pacathy @pacathy

@lesleys56
There are a number of techniques people use for airway clearance and people, with advice from their docs. Mine has changed since initially diagnosed. I went to Mayo thinking I had MAC lung based on CT’s and inadequate sputum samples.
They thought I had it, too, and while waiting the 6 weeks for cultures, they told me to do the following 2x/day:
Albuterol inhaler
Aerobika
Huff cough
Postural drainage
Huff cough and exercise 30”/day

I really didn’t get stuff up even with all this. When doc called with negative sputum results, I asked if I could cut back to daily and she ok’d it.
I’d been on wait list for appt at Penn and saw doc there 3 months later. He agreed daily would be ok. I also told him I had started getting reflux from postural drainage and had stopped it. He agreed.
I did daily nebs and airway clearance with albuterol nebs followed by either accapella or Aerobika or Autogenic drainage for about a year. I was also getting aggressive treatment for my post nasal drip.
In fall of 2024, Penn pulmonologist suggested I add 7% saline because I’d had frequent respiratory infections the prior winter. That really seemsd to help and I had no URI’s.
This past October, pulmonologist said I could do AC a few times/week. Note-I have great PFT’s and don’t bring up sputum. I would have to do more otherwise. If I get a URI, I’d go back to clearing 2x/day. As you see, needs changes as conditions change.

Here’s a video from National Jewish. https://m.youtube.com/watch

Sue has posted a list of Resources that are helpful if you have time to browse that post.

Jump to this post

Thank you for your response.

REPLY
Profile picture for alicebrew1
alicebrew1 | @alicebrew1 | Jan 18 11:47am
In reply to @pacathy "@alicebrew1 I wrote a long post to Leslie about mine. Now that we have my sinus..." + (show)
Profile picture for pacathy @pacathy

@alicebrew1 I wrote a long post to Leslie about mine. Now that we have my sinus under control, I don’t produce much mucus and never have. Most here who do produce sputum seem to use albuterol nebs, hypertonic saline 7% or 3 if 7 isn’t tolerated and Aerobikas and/or exercise then huff cough. It does vary with what people find works.
I’ve been very stable for a year. If that changes, I’ll increase AC to twice daily until better.
Good luck to you!

Jump to this post

@pacathy thank you

REPLY
Profile picture for scoop
scoop | @scoop | Jan 18 12:05pm
In reply to @pacathy "@lesleys56 There are a number of techniques people use for airway clearance and people, with advice..." + (show)
Profile picture for pacathy @pacathy

@lesleys56
There are a number of techniques people use for airway clearance and people, with advice from their docs. Mine has changed since initially diagnosed. I went to Mayo thinking I had MAC lung based on CT’s and inadequate sputum samples.
They thought I had it, too, and while waiting the 6 weeks for cultures, they told me to do the following 2x/day:
Albuterol inhaler
Aerobika
Huff cough
Postural drainage
Huff cough and exercise 30”/day

I really didn’t get stuff up even with all this. When doc called with negative sputum results, I asked if I could cut back to daily and she ok’d it.
I’d been on wait list for appt at Penn and saw doc there 3 months later. He agreed daily would be ok. I also told him I had started getting reflux from postural drainage and had stopped it. He agreed.
I did daily nebs and airway clearance with albuterol nebs followed by either accapella or Aerobika or Autogenic drainage for about a year. I was also getting aggressive treatment for my post nasal drip.
In fall of 2024, Penn pulmonologist suggested I add 7% saline because I’d had frequent respiratory infections the prior winter. That really seemsd to help and I had no URI’s.
This past October, pulmonologist said I could do AC a few times/week. Note-I have great PFT’s and don’t bring up sputum. I would have to do more otherwise. If I get a URI, I’d go back to clearing 2x/day. As you see, needs changes as conditions change.

Here’s a video from National Jewish. https://m.youtube.com/watch

Sue has posted a list of Resources that are helpful if you have time to browse that post.

Jump to this post

@pacathy How often do you have CT scans?

REPLY
1 reply
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pacathy | @pacathy | Jan 19 5:59am
In reply to @scoop "@pacathy How often do you have CT scans?" + (show)
Profile picture for scoop @scoop

@pacathy How often do you have CT scans?

Jump to this post

@scoop My last was March or April of 2024. I’d had them every 6-9 months until then, but had still been getting viral URI’s.

I’ll probably ask him about 1 at next appt. How often do you get CT’s? Did you get sinus infections cleared? I’m trying to decrease meds a bit and have wondered.

REPLY
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scoop | @scoop | Feb 9 2:23pm

Excellent summary presentation on current treatments for BE and especially NTM

REPLY
2 replies
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blm1007blm1007 | @blm1007blm1007 | Feb 10 10:38pm
In reply to @scoop "Excellent summary presentation on current treatments for BE and especially NTM https://www.youtube.com/watch?v=dRjFpRK_38c" + (show)
Profile picture for scoop @scoop

Excellent summary presentation on current treatments for BE and especially NTM

Jump to this post

@scoop So glad you posted this. Very informative. This presentation will give us all much to think about for different reasons since we are all different in our BE and journey.
Thanks Scoop, great detective work. 😋
Barbara

REPLY
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becleartoday | @becleartoday | Feb 11 6:20am
In reply to @scoop "Excellent summary presentation on current treatments for BE and especially NTM https://www.youtube.com/watch?v=dRjFpRK_38c" + (show)
Profile picture for scoop @scoop

Excellent summary presentation on current treatments for BE and especially NTM

Jump to this post

@scoop
Hi there! Perhaps you can start a new discussion with this link. I’m in Mexico without a computer and I know people are waiting for this recap. Warm regards, Linda Esposito.

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