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lmh7
@lmh7

Posts: 11
Joined: Apr 20, 2017

Are all of you NJH patients with MAC doing pulmonary hygiene?

Posted by @lmh7, Wed, Oct 17 9:47am

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.

REPLY

@lmh7 Hi there. From what I understand, the use of an Aerobika is to help bring up the gunk in your lungs. I thought it was used by patients that are very congested and have a difficult time bringing it up. I am sure that all people have some amount of mucous in their lungs and it gets worked upward and out. Because those of us with lung disease usually have lung structure issues like scarring or bonchiectasis; mucous can get trapped in our lungs. Sometimes it isn't obvious to us that phlegm is being trapped because it is a small amount and doesn't cause a cough. It can still become a breeding ground for mac and pseudomonas. I find that doing the inhaled saline (sodium chloride) really helps to keep my airways cleared. It works on several levels: 1) it thins the mucous by adding moisture to it; that it turn, makes it easier to bring it up 2) it is slightly irritating so it can cause you to cough up the loosened phlegm 3) the salt is a natural antibacterial that hinders the growth of colonies. You may want to consider using the inhaled saline if you aren't already. I am hoping that others will jump in with their experience with the Aerobika to help you decide. Please let me know what you do and how it works for you. BTW, NJH is ONE of the top centers for treating MAC. Mayo Clinic is the other. : )

@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.

@windwalker

@lmh7 Hi there. From what I understand, the use of an Aerobika is to help bring up the gunk in your lungs. I thought it was used by patients that are very congested and have a difficult time bringing it up. I am sure that all people have some amount of mucous in their lungs and it gets worked upward and out. Because those of us with lung disease usually have lung structure issues like scarring or bonchiectasis; mucous can get trapped in our lungs. Sometimes it isn't obvious to us that phlegm is being trapped because it is a small amount and doesn't cause a cough. It can still become a breeding ground for mac and pseudomonas. I find that doing the inhaled saline (sodium chloride) really helps to keep my airways cleared. It works on several levels: 1) it thins the mucous by adding moisture to it; that it turn, makes it easier to bring it up 2) it is slightly irritating so it can cause you to cough up the loosened phlegm 3) the salt is a natural antibacterial that hinders the growth of colonies. You may want to consider using the inhaled saline if you aren't already. I am hoping that others will jump in with their experience with the Aerobika to help you decide. Please let me know what you do and how it works for you. BTW, NJH is ONE of the top centers for treating MAC. Mayo Clinic is the other. : )

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@imh7…Hi there….I use the aerobika x2 a day for app 15 minutes each time, to get the mucous out of my lungs…in the am, I don't get much, but after I work out for an hour it all comes up with the aerobika…I also use the saline…sometimes we get conflicting information, and just have to use our own common sense as to what works for us….I find Terry's information always informative, and use her information as a baseline..

@imh7 I went to @windwalker 's Dr at Mayo. I have mild bronchiectasis and mild MAC. I do not cough except to try to get the phlegm up after nebulizing. He suggested the aerobika green and also likes me nebulizing. Just offering a little more input. Kate

@alleycatkate

@imh7 I went to @windwalker 's Dr at Mayo. I have mild bronchiectasis and mild MAC. I do not cough except to try to get the phlegm up after nebulizing. He suggested the aerobika green and also likes me nebulizing. Just offering a little more input. Kate

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Thank you, Kate

@megan123

@imh7…Hi there….I use the aerobika x2 a day for app 15 minutes each time, to get the mucous out of my lungs…in the am, I don't get much, but after I work out for an hour it all comes up with the aerobika…I also use the saline…sometimes we get conflicting information, and just have to use our own common sense as to what works for us….I find Terry's information always informative, and use her information as a baseline..

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I am using the nebulizer now 2x a day with albuterol sulfate inhalation solution. I will talk to my Pulmonologist about the aerobika. There’s a Mayo Clinic here in Phoenix, AZ. If they accept my insurance, I will consider switching to a Mayo pulmonologist. Thank you. You’re all very helpful.

@alleycatkate

@imh7 I went to @windwalker 's Dr at Mayo. I have mild bronchiectasis and mild MAC. I do not cough except to try to get the phlegm up after nebulizing. He suggested the aerobika green and also likes me nebulizing. Just offering a little more input. Kate

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I am sorry…I meant the ACAPELLA, not the aerobika.

@jasmine321

I am using the nebulizer now 2x a day with albuterol sulfate inhalation solution. I will talk to my Pulmonologist about the aerobika. There’s a Mayo Clinic here in Phoenix, AZ. If they accept my insurance, I will consider switching to a Mayo pulmonologist. Thank you. You’re all very helpful.

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@jasmine321 Hi Jasmine. If your insurance covers you to go to the Mayo there in Phoenix, I defiitely would. Once you have the Mayo experience, you won't want to go anywhere else. Also, you stand a greater chance at recovery by going there.

@windwalker

@lmh7 Hi there. From what I understand, the use of an Aerobika is to help bring up the gunk in your lungs. I thought it was used by patients that are very congested and have a difficult time bringing it up. I am sure that all people have some amount of mucous in their lungs and it gets worked upward and out. Because those of us with lung disease usually have lung structure issues like scarring or bonchiectasis; mucous can get trapped in our lungs. Sometimes it isn't obvious to us that phlegm is being trapped because it is a small amount and doesn't cause a cough. It can still become a breeding ground for mac and pseudomonas. I find that doing the inhaled saline (sodium chloride) really helps to keep my airways cleared. It works on several levels: 1) it thins the mucous by adding moisture to it; that it turn, makes it easier to bring it up 2) it is slightly irritating so it can cause you to cough up the loosened phlegm 3) the salt is a natural antibacterial that hinders the growth of colonies. You may want to consider using the inhaled saline if you aren't already. I am hoping that others will jump in with their experience with the Aerobika to help you decide. Please let me know what you do and how it works for you. BTW, NJH is ONE of the top centers for treating MAC. Mayo Clinic is the other. : )

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@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.

@alleycatkate

@imh7 I went to @windwalker 's Dr at Mayo. I have mild bronchiectasis and mild MAC. I do not cough except to try to get the phlegm up after nebulizing. He suggested the aerobika green and also likes me nebulizing. Just offering a little more input. Kate

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@alleycatkate Which Dr do you see at Mayo? I am so surprised my pulmonologist there says I don't need either the Aerobika or nebulizer. I think I am going to insist on it.

@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 ?.

@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.

@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.

@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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