1. < MAC & Bronchiectasis

Are all of you with MAC doing pulmonary hygiene?

Posted by lmh7 @lmh7, Oct 17, 2018

I'm wondering if all of you NJH patients with MAC are instructed to use an Aerobika for pulmonary hygiene even if you do not have a chronic cough? My Mayo clinic pulmonologist says I don't need to use one as I do not cough so there would be very little benefit of using one. I realize NJH is the top clinic for MAC so I'd like to know what their doctors suggest.

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Mentor
Terri Martin, Volunteer Mentor | @windwalker | Oct 23, 2018
In reply to @alleycatkate "@Imh7 @jasmine321 @windwalker ...Oooops! Not sure if I am posting/responding to imh7 or jasmine...Jasmine...I apologize for..." + (show)
@alleycatkate

@Imh7 @jasmine321 @windwalker ...Oooops! Not sure if I am posting/responding to imh7 or jasmine...Jasmine...I apologize for not replying to you. I think we are all in the same discussion. Although I have not been nebulizing long, I too have found that I have gone from green/yellow gunk fairly often to mostly a clear color now when I cough up my phlegm, sometimes with just tiny specks of green. I take that as a very good sign. I have not gotten mine yet, as my medical supply shop is out of them, but I will be ordering the acapella online. Looks like they are running $35-40. ...It is called an Acapella flutter valve or Acapella Pep Device. I believe the green is for those with good air velocity. Terri... Do you know if that is right? Terri... Is that the clearance device you use or is yours an aerobika? .Also, Would there be any reason not to try this as opposed to a $3,400 vest? I don't think a lot of us have 3,400. to invest in a vest... Jasmine...can you call your Dr and ask which airway clearance device you could use that is affordable?

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@alleycatkate In short, I do not have an Aerobika, and I think the vests are for people that are in dire shape. They were originally designed for people with CF who are literally drowning in phlegm.

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Mentor
Terri Martin, Volunteer Mentor | @windwalker | Oct 23, 2018
In reply to @heathert "@imh7 My doc is the same but I insisted on the saline inhalation as it is..." + (show)
@heathert

@imh7 My doc is the same but I insisted on the saline inhalation as it is the only way for me to get something up and sometimes there is bits of yellow/green so I think it is a good thing although I do not have any symptoms and tests say Im MAC free now.

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@heathert Hi Heather. You should see your sputem turn to clear after a while of using the saline on a regular basis.

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1 reply
Flib | @flib | Oct 23, 2018
In reply to @ginak "Does anyone use anything less than 7%? I just started using the nebulizer and my Dr...." + (show)
@ginak

Does anyone use anything less than 7%? I just started using the nebulizer and my Dr. Only prescribed .9% saline. I guess I’m going to ask for a higher % saline.
Thanks
Gina

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@ginak I use 3.5% I tried 7% but it was too strong for my lungs. My doctor suggested the smaller dose and then I wanted to go higher. She was right.

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1 reply
heathert | @heathert | Oct 23, 2018
In reply to @windwalker "@heathert Hi Heather. You should see your sputem turn to clear after a while of using..." + (show)
@windwalker

@heathert Hi Heather. You should see your sputem turn to clear after a while of using the saline on a regular basis.

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@windwalker I have noticed that, and if I skip saline for a week I get a bit of green again when I start using saline, then after using saline for a few days, it goes clear, magic!!!!!!!

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jasmine321 | @jasmine321 | Oct 24, 2018
In reply to @windwalker "@jasmine321 Hi Jasmine.Those vests were originally designed for patiets with Cystic Fibrosis. It is intended for..." + (show)
@windwalker

@jasmine321 Hi Jasmine.Those vests were originally designed for patiets with Cystic Fibrosis. It is intended for people who are drowning in phlegm. They may be over-prescribing these things. I have a large massager with a strong vibration on it. I used to use it on my back and it did shake stuff loose in the lungs. There is also hand-cupping. If you have a spouse that can briskly pat/pound you on the back witj their cupped hands; that also works to loosen phlegm.

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Thank you Terri. I also have a massager that I bought a while back. That's what I’m using now.

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alleycatkate | @alleycatkate | Oct 24, 2018
In reply to @windwalker "@alleycatkate Did you see my post to @lmh7? It is a few posts back. It answers..." + (show)
@windwalker

@alleycatkate Did you see my post to @lmh7? It is a few posts back. It answers your questions. Let me know if you cannot find it.

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@windwalker Thanks Terri...I see the post.

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ginak | @ginak | Oct 25, 2018
In reply to @flib "@ginak I use 3.5% I tried 7% but it was too strong for my lungs. My..." + (show)
@flib

@ginak I use 3.5% I tried 7% but it was too strong for my lungs. My doctor suggested the smaller dose and then I wanted to go higher. She was right.

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@flib Thanks, I am going to ask for higher % than the .9 Maybe at least 3% and see how that works. I thought .9 seemed so low, not even 1%

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