1. < MAC & Bronchiectasis

Airway clearance methods

Posted by mr1123 @mr1123, Jul 24 2:50pm

I am thankful for this group and the information shared.
My story started in November of 23 with shortness of breath. After 5 trips to the ER I was diagnosed with MAC in April of 24. The ID doctor started me on 3 antibiotics 3x a week. After 2 months he dropped the RafAMPOin so I am currently taking Azithromycin and Ethambututol.
I do not qualify for pulmonary rehab so I found a class on You tube and have done that, it is helpful.
I did buy a shutter valve and have used but it makes my chest hurt.
I do have GERDS and I have chest pain after eating or drinking.

Did the ID doctor or the pulmonary doctor discuss the airway clearance.
I’ve had over 25 doctor visits and tests, most tests come back normal for which I am thankful.

I am pushing myself to exercise and I believe my shortness of breath is improving.

Hanging in there and sending prayers to each of you in this group.
Thanks for being there.
Grateful in STL

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

cwal | @cwal | Jul 25 6:09am

I'm not sure how much you know about airway clearance, but I would suggest you do some research about how and why it is important. Learn all you can about it and then most important....do it.

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positivethinking | @positivethinking | Jul 25 8:44am

I too had chest pain from the acapella device so my doctor ordered me the airway clearance vest from Hillrom. Occasionally I still use the acapella device in addition to the vest but now that I’m not relying solely on it I don’t have the chest pain

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Mentor
Sue, Volunteer Mentor | @sueinmn | Jul 25 9:32am

@mr1123 Many of us feel lost when we are first diagnosed - doctor visits seem to focus tests, results, medications and referrals - with little help on what to do day-to-day, except maybe the words "airway clearance."
One of the most helpful things I found early on, besides the great people in this support group, was to watch the patient conference recordings with the experts.

My current favorite for an in-depth look at bronchiectasis and and why and how to do airway clearance, is from Dr Pamela McShane at UT Tyler, a respected treatment center.


Another are the videos from the 2024 Patient Conference at National Jewish Health

One last tip, if the flutter valve you are use is making your chest hurt, you may need to turn down the intensity for now, and increase it as you strengthen your lungs.

How are you doing with the antibiotics?

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1 reply
chilest0217 | @chilest0217 | Jul 25 12:13pm

I was on these 3 antibiotics for 12 months for MAC. I think M&Ms would have been just as effective as Azithromycin. I saw no benefit from the 12 months of being on these drugs.

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2 replies
mr1123 | @mr1123 | Jul 25 9:57pm
In reply to @sueinmn "@mr1123 Many of us feel lost when we are first diagnosed - doctor visits seem to..." + (show)
@sueinmn

@mr1123 Many of us feel lost when we are first diagnosed - doctor visits seem to focus tests, results, medications and referrals - with little help on what to do day-to-day, except maybe the words "airway clearance."
One of the most helpful things I found early on, besides the great people in this support group, was to watch the patient conference recordings with the experts.

My current favorite for an in-depth look at bronchiectasis and and why and how to do airway clearance, is from Dr Pamela McShane at UT Tyler, a respected treatment center.


Another are the videos from the 2024 Patient Conference at National Jewish Health

One last tip, if the flutter valve you are use is making your chest hurt, you may need to turn down the intensity for now, and increase it as you strengthen your lungs.

How are you doing with the antibiotics?

Jump to this post

I have been trying to read and watch the recommended programs.
So far the antibiotics have not been to bad.
Thanks

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arleneg | @arleneg | Jul 25 10:01pm
In reply to @chilest0217 "I was on these 3 antibiotics for 12 months for MAC. I think M&Ms would have..." + (show)
@chilest0217

I was on these 3 antibiotics for 12 months for MAC. I think M&Ms would have been just as effective as Azithromycin. I saw no benefit from the 12 months of being on these drugs.

Jump to this post

That’s hard to hear since I am about to start on them.

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1 reply
mariegrace | @mariegrace | Jul 26 8:45am
In reply to @chilest0217 "I was on these 3 antibiotics for 12 months for MAC. I think M&Ms would have..." + (show)
@chilest0217

I was on these 3 antibiotics for 12 months for MAC. I think M&Ms would have been just as effective as Azithromycin. I saw no benefit from the 12 months of being on these drugs.

Jump to this post

I started ethambutol+azithromycin 5 weeks ago. I wanted a chest xray after 3 months to see if thee drugs improved my congestion/MAC.
My pulmonologist said it takes a very long time to see any improvement in the lungs.
I also do vest, nebulizer tx, aerobika.
When I met with ID, he wanted me to add Arikayce 3x a week.
My pulmonologist wants me on the drugs for now. Its tough.
Stay strong everyone!

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rosa80 | @rosa80 | Jul 26 3:55pm
In reply to @arleneg "That’s hard to hear since I am about to start on them." + (show)
@arleneg

That’s hard to hear since I am about to start on them.

Jump to this post

I’m on the 3 antibiotics for over a month now, after 2 weeks on these , my cough is gone, I’m thankful for the good results , because I also have Bronchiectasis, I continue with airway clearance, I haven’t use my nebulizer or albuterol inhaler, I’m thankful for this support group,I also take a lot of supplements and recently I added NAC 600 mg daily, supposed to be good for “lung” health , again thank you Lord!

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