(MAC/MAI) Mycobacterium Avium Complex Pulmonary Disease: Join us

Dear Jane, I was like you unable to cough up phlegm. Bronchoscopy was necessary to diagnose the infection. I progressed from
1. Accapella alone to
2. Aerobia with nebulized saline to
3. The Vest with nebulized saline.
Accapella did not cut it for me and could not withstand heat sterilization, so I stopped it. The respiratory therapist at NJH taught me to use Aerobica along with nebulized saline. During the first three days of my stay at NJH, I had to repeat airway clearance with 7% and 10% saline to loosen up thick mucous in the lungs. After that, only 7% was prescribed for home use. Later, I found The Vest to be the best device. Initially, the Vest was set on one fixed frequency. But, after learning about the Minnesota Protocol that changes frequencies during a session, I become more productive. What works for me now is 20 minutes on The Vest with simultaneous nebulization of 7% saline, followed by autogenic drainage. Others do it differently because their needs are different.

If you are interested in having a guided autogenic drainage, go to the App Store, download Autogenic Drainage and just follow the directions in the Application. It takes 4-5 minutes/session.

From experience, I really recommend having NTM respiratory therapist to help you decide what the best course of airway clearance is best for you. You may have to make several adjustments like I did. It took me over 2 years to get to this point. The therapist is another yet NTM specialist you need to have in your life. The RT will also teach you how to clean and sterilize all the tools you use for airway clearance which is very important to prevent reinfecting your lungs.
Best of luck.

@lauraadam2425 - Sue's description of her progression and the help she got from the RT is one of the best l have seen!
As with everything else associated with MAC and Bronchiectasis, each one of us is different, and we need to keep trying until we achieve success.
Early in my journey, I coughed constantly, but it was dry and painful. The pulmonologist's very experienced nurse finally got me producing sputum with 10% saline and manual back percussion. It looked like green glue!
Once on the saline, using Aerobika and understanding how to get the saline in deeply, I can now, after 5 years, do airway clearance quite easily.
If l get lazy with the saline nebs, it begins to thicken up again. Since I never want to go back on the antibiotics again, it's right back to daily news!
One thing that works for me - I use a tiny, portable neb. As soon as I finish using it, I clean it (and boil weekly) then put it on my desk next to my computer to use again. Every morning as I read Connect, I "smoke my pipe" and cough.
I hope with Sue's tips, you find a routine that works for you!
Have you worked with a respiratory therapist?

I’m pretty much in that same boat. I use a nebulizer three times a day, a vibrating vest twice a day, and a flutter valve device twice a day. A couple of times a week I will cough up a chunk of mucous, but cannot produce enough sputum to do a culture.

It is frustrating, sometimes if I tell my pulmonary Dr that the nebulizer isn't working I get the feeling she doesn't believe me that I am using it.

I go to the respiratory department in the hospital to try and give sputim samples every month. They try to help but always comment that there isn't anything coming up. I can feel my lungs are heavy but nothing is loose. Sometimes I get a very small amount for a test but takes a lot of work and a long time.

I have been using the nebulizer and aerobika for over 3 years and remained stable. Prior to that, I was on the big 3 (3 antibiotics, 3 days a week) for about 6 months but had to stop because I woke up one day with terrible tinnitus and hearing loss. I realized that my respirologist didn’t know very much about NTM so I found an NTM specialist (who took me off the medication and started me on airway clearance). My bacterial count in the AFB test was 4+ after 6 months on the medication but it has fluctuated around 0 or 1+ since getting established on the airway clearance.

Like you, I had barely any sputum all the time I was on the medication. I do now that I do airway clearance twice a day with 7% saline and use the aerobika. I also get my husband to pat my back and sides where the respiratory therapist working with the NTM specialist directed us (further loosens the goop in my lungs). I also do sort of lung (autogenic) squeeze that I learned from a facebook group I follow on lung matters.

This is a great forum to follow as there is so much knowledge and experience shared by people who have been dealing with bronchiectasis and NTM (I have MAC). Hope you are able to benefit from this knowledge to manage your health care!

Jane - Even though it doesn't seem like it when you read about it on Connect, Bronchiectasis & (especially) MAC are quite rare. As a result many smaller communities lack pulmonologists and respiratory therapists with a good understanding of our conditions and how to treat them. You may need to seek out professionals with more experience. National Jewish Health (NJH), the Mayo Clinics, and several other places in the country are highly experienced in treating us.
Is there any chance you can seek treatment in one of those places?
Sue

Thank you all for your replies. I will continue to be diligent in using the nebulizer and hope with time it works for me. I am waiting for my last culture results wish can rake 2 months to get back and see where I stand after 6 months. I have been reading your site for a while and finally decided to reach out. You all seem to be such a good source of information, thank you for that.

Jane, please, don’t give up. Most of us struggled initially, but we persevered. Airway clearance used to take me 2 hours/session doing 2 sessions daily. Now, it takes 30 minutes/session. It was one of the most difficult life style changes I had to make.
Are you nebulizing with 7% saline? How often do you do it?
Is it possible to ask your pulmonologist to prescribe The Vest?

To sue 102. Thank you for your reply. I use sodium chloride 7% and albuterol 2.5 % twice a day each in a nebulizer and follow with the flutterer. . I try so hard to breath them in I get light headed. It takes that much effort, but just makes my cough worse then and couple of hours afterwards. I take 7% sodium chloride when I go to the Respiratory Therapys at the hospital every month to give sputim tests. Their comment is that they agree there just isn't anything they can hear. My CT's have gotten worse (due for one in Feb). See my infectious disease Dr in a couple of days and will see what he says, but am sure the answer will be to continue the nebulizer.