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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@Imh7 Dr Leventhal at Mayo. I told him I was nebulizing and he responded that nebulizing is a "good basic treatment for (my) ongoing mild bronchiectasis to help control symptoms of cough and sputum." Also a suggestion of the acapella- green (not aerobika, my earlier mistake) to help clear phlegm. It was suggested that once I get my acid reflux under control and my airway symptoms are better than the nebulizing could be reduced or possibly stopped. I think it is all a matter of how severe symptoms are but as he did say in response to a comment I made about nebulizing...."it can't hurt." I personally would prefer overkill just to ensure I am doing everything I can to keep Bronch & MAC at bay. My original, local pulmonologist said absolutely not to nebulize...I did not believe him and got a script from my GP for the nebulizer/saline. I feel it helps...and am glad I can now rest easy after seeking advice from a professional at Mayo. Maybe you need a further discussion with your Dr. for an understanding on his thinking? Do you cough or have phlegm. Also wondering if you have bronchectasis ?.

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@alleycatkate

@Imh7 Dr Leventhal at Mayo. I told him I was nebulizing and he responded that nebulizing is a "good basic treatment for (my) ongoing mild bronchiectasis to help control symptoms of cough and sputum." Also a suggestion of the acapella- green (not aerobika, my earlier mistake) to help clear phlegm. It was suggested that once I get my acid reflux under control and my airway symptoms are better than the nebulizing could be reduced or possibly stopped. I think it is all a matter of how severe symptoms are but as he did say in response to a comment I made about nebulizing...."it can't hurt." I personally would prefer overkill just to ensure I am doing everything I can to keep Bronch & MAC at bay. My original, local pulmonologist said absolutely not to nebulize...I did not believe him and got a script from my GP for the nebulizer/saline. I feel it helps...and am glad I can now rest easy after seeking advice from a professional at Mayo. Maybe you need a further discussion with your Dr. for an understanding on his thinking? Do you cough or have phlegm. Also wondering if you have bronchectasis ?.

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Yes, I have bronchiectasis. I also have frequent dry coughs and occasional phlegm. When I started nebulizing the green phlegm came out and now its white. Most of the time it’s dry cough. He suggested the vest therapy to help mobilize secretions, but the device is so expensive I cannot afford it. My insurance pays 70% but I have 30% copay which is $3400.00. The nebulizer helps.

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@jasmine321

Yes, I have bronchiectasis. I also have frequent dry coughs and occasional phlegm. When I started nebulizing the green phlegm came out and now its white. Most of the time it’s dry cough. He suggested the vest therapy to help mobilize secretions, but the device is so expensive I cannot afford it. My insurance pays 70% but I have 30% copay which is $3400.00. The nebulizer helps.

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@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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@lmh7

@windwalker Thanks for your always informative info! I'm wondering how you inhale saline, or is that what the Aerobika is used for? Or is it put in a nebulizer? I will be asking about this at my next appointment. Also, which doctor do you see at Mayo? I keep reading about Dr. Aksamit and wonder if I should consult with him also. I see Dr. Clain, who is a wonderful pulmonologist; although I'm not sure if he "specializes" in MAC or not.

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@lmh7 Hi. @alleycatkate, @america, and myself see Dr. Leventhal at the Mayo in Florida. Dr. Aksamit I believe is at the Mayo in Rochester. The only way to know if your dr knows much about treating mac is to ask him. Ask him how many mac patients he has treated and how was their outcome. Askhim wjat he knows about mac. You should get an idea from that.

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@lmh7

@windwalker Thanks for your always informative info! I'm wondering how you inhale saline, or is that what the Aerobika is used for? Or is it put in a nebulizer? I will be asking about this at my next appointment. Also, which doctor do you see at Mayo? I keep reading about Dr. Aksamit and wonder if I should consult with him also. I see Dr. Clain, who is a wonderful pulmonologist; although I'm not sure if he "specializes" in MAC or not.

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@lmh7 The saline is 7% sodium chloride. It is inhaled as a mist by using a nebulizer. The benefits are that it adds moisture to the phlegm making it thinner and easier to cough up. Phlegm is often very sticky and clings to the insides of your lungs and bronchial tube. Thick phlegm is attractive to mac and pseudomonas. They look for goo to colonize in. Since you are not coughing, you may not need the saline at this point. You may want to discuss with your dr as to whether it would be a good prophilaxis (preventative measure).

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@lmh7, Your dr. may think you don't need to nebulize the saline at this time because you are not coughing and saw no build-up of phlegm in your x-ray or ct scan. I feel like you can trust a Mayo doctor, they only hire the best of the best.

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@windwalker

@lmh7 Hi. @alleycatkate, @america, and myself see Dr. Leventhal at the Mayo in Florida. Dr. Aksamit I believe is at the Mayo in Rochester. The only way to know if your dr knows much about treating mac is to ask him. Ask him how many mac patients he has treated and how was their outcome. Askhim wjat he knows about mac. You should get an idea from that.

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@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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@windwalker

@lmh7 The saline is 7% sodium chloride. It is inhaled as a mist by using a nebulizer. The benefits are that it adds moisture to the phlegm making it thinner and easier to cough up. Phlegm is often very sticky and clings to the insides of your lungs and bronchial tube. Thick phlegm is attractive to mac and pseudomonas. They look for goo to colonize in. Since you are not coughing, you may not need the saline at this point. You may want to discuss with your dr as to whether it would be a good prophilaxis (preventative measure).

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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

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 Hi Gina. There are several members here on Connect that use 3% sodium chloride. It is less irritating for those with more gragile lungs. I know that @flib is on that dose.

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@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 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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