Healthy with MAC: What's your follow up like?

This is a very useful discussion to have started, @rmason. While follow up is often discussed, we don't have a discussion dedicated to it. Here are a couple of related discussions:
- No symptoms- do I have to be treated? https://connect.mayoclinic.org/discussion/no-symptoms-do-i-have-to-be-treated/
- Diagnosed with MAC but not being treated https://connect.mayoclinic.org/discussion/diagnosed-with-mac-but-not-being-treated/

@auntnanny @brigby @irene5 @poppins @deborahwolf @boomerexpert @tdrell @heathert @pfists
When your asymptomatic, what follow up schedule does your specialist recommend?

I'm never asymptomatic in that I always have a horrible sounding cough. sometimes it is worse than others but -- always there. It has never gone away since I was diagnosed with bronchiectasis and have been told I do have some MAC but it is not bad enough to be treated. But cough and phlegm is always with me and Mayo's just says I have to cough it up -- it's the only way to get it out of lungs and they try to not suppress it. Not fun, but I've lived with it for many years now. I'm not what I call "sick"...... but it does kind of make decisions for me about where to go, etc. Especially now, with the pandemic..... I could clear a room in 15 seconds.

@rmason I still have a 6 month follow up, with sputums and CT scan.

5 years after full review at NJH....and being told no Med treatment at that point....to return for view every year...then 18 months....need to return now ....sent in culture 18 months ago...negative.
Focus for me was to do daily airway clearance ...follow GERD guidelines.

Two years after dropping antibiotics, while still MAC positive, doing daily airway clearance with 7% saline, I am virtually symptom free, except for frequent shortness of breath. Talked to pulmonology nurse today. Switching to alternate 7% / 3% saline nebs due to supply issues. Already down to annual visits and CT scans.
Feeling fortunate.
Sue

I was diagnosed 4 and a half years ago- I live in SW MO- two good sized hospitals in my town but they are not teaching hospitals. My pulmonologist told me “not to do anything different “ and infectious disease doc recommended “hot steamy showers” to clear my lungs! I learned on this forum that was not good advice!
I was on a year course of the big 3 which turned into big 2 as I could not tolerate one. Still growing some MAC at the end but chose to stop.
I am doing saline nebs each morning and can get some phlegm up, and have a slight cough occasionally but no other issues. I’m very active-biking,hiking,etc.
My pulmonologist doesn’t want to see me regularly at all! I am retiring in May and will be eligible for Medicare in August. Now the decision to get traditional Medicare so I can get seen where I choose, or managed Medicare where I will be limited to same providers. Obviously there will be a big cost difference. I haven’t had a CT scan or cultures in 2 years.
Thoughts?

Hi! I have a managed Medicare which is pretty liberal about my providers so you may find one where you can go where you want and still save some money. It has also not given me any difficulty about which facilities I am able to have procedures etc. It seems you should have a pulmonologist who definitely sees you on a regular basis, maybe can vary the frequency at times but that would depend on how your appointment goes. Might be time to find a new doc. We need to have confidence in our healthcare provider. Congrats on your upcoming retirement and good luck with insurance shopping. My medical doctor does provide a program to assist in choosing the right health care for your needs. It can be a headache, good luck.

Me too!

Sue, do you have any other lung morbidities or just MAC?

Asthma, allergies, hyper-reactive airway disorder and Bronchiectasis. I also am at increased residue to workplace exposures to paper dust, printing plant chemicals, asbestos, and childhood exposure to asbestos (we used to play in contaminated slag piles)
Sue