Are all of you with MAC doing pulmonary hygiene?
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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@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.
@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
Thank you, Kate
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.
I am sorry…I meant the ACAPELLA, not the aerobika.
@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 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 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.