1. < MAC & Bronchiectasis

Bronchiectasis: New Diagnosis

Posted by navylady @navylady, Jul 26, 2018

New to your group. Non-smoker. Pneumonia x6 in 12 years, double pneumonia twice. Was diagnosed with chronic bronchitis and COPD for past 15 years, now pulmonologist based on x-rays and MRI has diagnosed no COPD, yes bronchiectasis. Take advair 250/50 twice a day. Past ten days I am increasingly gurgling, wheezing, some chest pain. I have recently moved to Florida which I like but am having long wait times to get into see a family care NP who can hopefully refer me to a pulmonologist. I walk 20-30 minutes a day. Any ideas how to manage this now. Am worried about getting pneumonia again. I went to one walk-in clinic at a reputable hospital. They literally did nothing except take x-rays. Didn't even talk to me. Just billed $2000+ for x-rays. Do I try another walk-in clinic. I feel very alone right now with this chronic medical problem.

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Mentor
Terri Martin, Volunteer Mentor | @windwalker | Sep 15, 2020
In reply to @barbb "@gej53, I don't even know what MAC is other than it seems to have some relationship..." + (show)
@barbb

@gej53, I don't even know what MAC is other than it seems to have some relationship with bronchiectasis. What is a smart vest? Sounds like good news about your CT. The Acapella is the only thing I'm doing. I don't know whether it is making any difference at all! So I look forward to seeing the Pulmonologist about that in October (very difficult to get an app't with her!) My symptoms: more coughing than normal - sometimes seems like a lot. Amount of phlegm is minimal, sometimes not. I'm guessing you may have more phlegm which would be why the other devices you mention? Did your doc show you how to use the Acapella? Mine had her nurse show me and then I practiced a few times with the RN. I think that was helpful.

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@barbb, Hello. Here is some info for you in a nutshell. MAC is short for mycobacterium avium complex a.k.a. NTM (non-tuberculosis mycobacterium) mac is a cousin to T.B. only it is not contagious like t.b. People with bronchiectasis are more prone to developing an infection from this bacteria than people without .That is due to the structural changes in the lung tissue that bronchiectasis causes and it traps bacteria. There is a lot of info in our older posts. You can go to the Discussion Board on the group's homepage and scroll through the topics. If you go to the magnifying glass at the top of this page and click on it, a box will appear. Type in @kateman and that member's posts will pop up. She has p Please let me know if you have trouble navigating this site.osted lots of helpful info. Same with my name @windwalker.

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Mentor
Terri Martin, Volunteer Mentor | @windwalker | Sep 15, 2020
In reply to @sueinmn "Hi Terri - I got mine on-line, I think through shopnebulizer.com, but I see Walmart also..." + (show)
@sueinmn

Hi Terri -
I got mine on-line, I think through shopnebulizer.com, but I see Walmart also has it - quite possibly cheaper. I find I prefer the Aerobika because I can use it while I neb (between neb cup & mouthpiece) or separately.
Sue

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Thank you Sue. Did your insurance pay for it?

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Mentor
Terri Martin, Volunteer Mentor | @windwalker | Sep 15, 2020
In reply to @kathyhg "What is the advantage of using the aerobika with the nebulizer - maybe besides saving time?" + (show)
@kathyhg

What is the advantage of using the aerobika with the nebulizer - maybe besides saving time?

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Hi Kathy, Nebulizing opens airways (w/albuterol) and the saline moistens and thins the mucous and sometimes helps to induce coughing. The,aerobika and acapella, are flutter type devices that help by using vibration to dislodge mucouse from the bronchial walls and from scarred areas of the lung.

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Terri Martin, Volunteer Mentor | @windwalker | Sep 15, 2020
In reply to @ginak "I ordered my Aerobika from Amazon. I had a prescrip from my Dr, but I was..." + (show)
@ginak

I ordered my Aerobika from Amazon. I had a prescrip from my Dr, but I was told my insurance didn’t cover that. So I just searched it on line.

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ok, Thank you Gina.

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Sue, Volunteer Mentor | @sueinmn | Sep 15, 2020
In reply to @windwalker "Thank you Sue. Did your insurance pay for it?" + (show)
@windwalker

Thank you Sue. Did your insurance pay for it?

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Partly - I think 20%, but it was my Blue Cross policy, not Medicare. It was hardly worth the paperwork.
Sue

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barbb | @barbb | Sep 15, 2020
In reply to @windwalker "Hi Kathy, Nebulizing opens airways (w/albuterol) and the saline moistens and thins the mucous and sometimes..." + (show)
@windwalker

Hi Kathy, Nebulizing opens airways (w/albuterol) and the saline moistens and thins the mucous and sometimes helps to induce coughing. The,aerobika and acapella, are flutter type devices that help by using vibration to dislodge mucouse from the bronchial walls and from scarred areas of the lung.

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@windwalker Hi Terri, Okay to call you by name rather than moniker? This is the best - and really only explanation that I have ever heard as to why I have to blow into the Acapella (whose name unnerves me because I use to love listening to a capella singing - before hearing loss). I'd like to plant you in my doctor's office (and probably many other offices) to talk to patients about their condition and the Acapella and similar items! 🙂

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barbb | @barbb | Sep 15, 2020
In reply to @rits "Bronchiectasis is a lung disease which causes difficulty for normal movement of mucus through our airways...." + (show)
@rits

Bronchiectasis is a lung disease which causes difficulty for normal movement of mucus through our airways. Our bodies send proteins and antibodies to fight the Bronchiectasis which combine with the mucus, forming sputum which gets stuck in our airways. Mycobacteria (MAC) ,as well as other bacteria and fungus love sputum. Flutter devices like the aerobika, percussion vests and nebulized saline help us cough out the sputum.

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@rits Thank you for your explanation!

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barbb | @barbb | Sep 15, 2020
In reply to @judyhodgern "Hi Barb, a very excellent source of NTM info is NTMir.org—judy" + (show)
@judyhodgern

Hi Barb, a very excellent source of NTM info is
NTMir.org—judy

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Thanks!

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gej53 | @gej53 | Sep 15, 2020
In reply to @windwalker "@gej53, Good morning. I have a script for the acapella gadget too, but no clue how..." + (show)
@windwalker

@gej53, Good morning. I have a script for the acapella gadget too, but no clue how or where to get it filled. How did you get yours?

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I received my nebulizer through a local DME (durable medical equipment) company. I contacted them and they checked on the insurance company coverage and mailed it to my home. My doctor had to send them a script for it also. 🙂

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1 reply
tdrell | @tdrell | Sep 16, 2020
In reply to @barbb "@tdrell Thanks! Another question! What is NTM? (neurological.....?)" + (show)
@barbb

@tdrell Thanks! Another question! What is NTM? (neurological.....?)

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Barbb.....as explained Already by wonderful others....NTM stands for non tuberculin mycobacterium......and under that heading MAC is one of several hundred identified species...see all the great other responses....and utilize Dr Google on line tdrell

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