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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.

tracestew | @tracestew | Sep 20, 2023

I found this visual the other day. I found it to be really helpful in explaining to others how NTM works. I thought someone might enjoy it. https://www.aboutntm.com/inside-the-lung-damage/

REPLY
Mentor
Sue, Volunteer Mentor | @sueinmn | Oct 27, 2023

Hi everyone - Did you know you can search JUST the posts in the MAC & Bronchiectasis Group (or any other Connect group)?
This group has gotten so big and busy (over 1800 members and growing almost every day!) that it can be had to find what you want.

Here is how to do it: At the very top of each discussion page there is a link "< MAC & Bronchiectasis"
Click it, and you get to the main list of MAC/Bronch discussions. Below the Group name is a search box - anything entered there only gives you links to the discussions and posts within this group.

The first items listed are Discussions which include the search term you entered in their title.
At the bottom of the entry is the date the specific discussion was last active.

The next items listed are Individual Posts which include the search term you used.
At the bottom is the date the message was posted.

Three helpful tips:
If you remember recently reading about a specific topic that interests you, but you can't remember where, this can help you find it.
If you recently posted something, and now you can't find it - type in a few words you remember & voila! There it is.
Finally, if a discussion hasn't been active for a long time, or a post is quite old (say a year or more) realize that the member may no longer be active, so it might take a while to get a reply.
Or find a post that is newer, and almost what you need, and post a reply to that person asking your question.

Does anyone else have tips on how they find things here on Connect?
Sue

REPLY
1 reply
scoop | @scoop | Oct 28, 2023
In reply to @sueinmn "Hi everyone - Did you know you can search JUST the posts in the MAC &..." + (show)
@sueinmn

Hi everyone - Did you know you can search JUST the posts in the MAC & Bronchiectasis Group (or any other Connect group)?
This group has gotten so big and busy (over 1800 members and growing almost every day!) that it can be had to find what you want.

Here is how to do it: At the very top of each discussion page there is a link "< MAC & Bronchiectasis"
Click it, and you get to the main list of MAC/Bronch discussions. Below the Group name is a search box - anything entered there only gives you links to the discussions and posts within this group.

The first items listed are Discussions which include the search term you entered in their title.
At the bottom of the entry is the date the specific discussion was last active.

The next items listed are Individual Posts which include the search term you used.
At the bottom is the date the message was posted.

Three helpful tips:
If you remember recently reading about a specific topic that interests you, but you can't remember where, this can help you find it.
If you recently posted something, and now you can't find it - type in a few words you remember & voila! There it is.
Finally, if a discussion hasn't been active for a long time, or a post is quite old (say a year or more) realize that the member may no longer be active, so it might take a while to get a reply.
Or find a post that is newer, and almost what you need, and post a reply to that person asking your question.

Does anyone else have tips on how they find things here on Connect?
Sue

Jump to this post

There’s also a save/bookmark feature, which is helpful. When I really want to remember something, I take a screenshot!

REPLY
scoop | @scoop | Nov 1, 2023

Exacerbation Prevention and Management of Bronchiectasis ( 2023 May 10)

A new term I've never heard used in all these years!
ELTGOL -- slow expiration with the glottis opened in the lateral posture

https://www.ncbi.nlm.nih.gov/pmc/articles/PMC10323201/
(good graphics)

REPLY
3 replies
irenea8 | @irenea8 | Nov 2, 2023
In reply to @scoop "Exacerbation Prevention and Management of Bronchiectasis ( 2023 May 10) A new term I've never heard..." + (show)
@scoop

Exacerbation Prevention and Management of Bronchiectasis ( 2023 May 10)

A new term I've never heard used in all these years!
ELTGOL -- slow expiration with the glottis opened in the lateral posture

https://www.ncbi.nlm.nih.gov/pmc/articles/PMC10323201/
(good graphics)

Jump to this post

Wow very helpful publication! Thanks Scoop.

REPLY
cayenne | @cayenne | Nov 2, 2023

Thank you for the article. The definition of an exacerbation is helpful.

REPLY
Mentor
Sue, Volunteer Mentor | @sueinmn | Nov 2, 2023
In reply to @scoop "Exacerbation Prevention and Management of Bronchiectasis ( 2023 May 10) A new term I've never heard..." + (show)
@scoop

Exacerbation Prevention and Management of Bronchiectasis ( 2023 May 10)

A new term I've never heard used in all these years!
ELTGOL -- slow expiration with the glottis opened in the lateral posture

https://www.ncbi.nlm.nih.gov/pmc/articles/PMC10323201/
(good graphics)

Jump to this post

Cha-ching! Once again you have hit the jackpot with your research. I will be looking at a lot of those citations when I get back to a real computer.
Thanks,
Sue

REPLY
annagh | @annagh | Nov 3, 2023

I found another article which helps me understand what ELTGOL is and have at least a guess about how to do it. A video of someone doing it would be helpful.
https://erj.ersjournals.com/content/51/1/1702232
Thanks for opening this path.
Anna

REPLY
sweethighland | @sweethighland | Nov 3, 2023
In reply to @scoop "Exacerbation Prevention and Management of Bronchiectasis ( 2023 May 10) A new term I've never heard..." + (show)
@scoop

Exacerbation Prevention and Management of Bronchiectasis ( 2023 May 10)

A new term I've never heard used in all these years!
ELTGOL -- slow expiration with the glottis opened in the lateral posture

https://www.ncbi.nlm.nih.gov/pmc/articles/PMC10323201/
(good graphics)

Jump to this post

I searched ELTGOL on youtube but all in different languages.

REPLY
1 reply
annagh | @annagh | Nov 3, 2023
In reply to @sweethighland "I searched ELTGOL on youtube but all in different languages." + (show)
@sweethighland

I searched ELTGOL on youtube but all in different languages.

Jump to this post

Me too. Looks like a respiratory therapist would be helpful, but maybe I can do an adapted version on my own, kind of opening back to breathe in, then twisting and compressing when breathing out slowly with throat open. Hopefully, I can combine this with the Aerobika on my side that Dr. Winthrop wants me to do.

https://www.youtube.com/watch?v=U1gOpRTBa4M
https://www.youtube.com/watch?v=81UFy4eSdls

Anna

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