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

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?

I was diagnosed over 4 yrs ago with bronchiectasis & MAC after landing in the ER due to hemoptysis. I switched from a Medicare advantage plan to a supplemental plan to insure that I could go to the medical provider of my choosing. Obviously it is more expensive monthly but I have had no copays for doctors, procedures, or scans. My Mayo pulmonologist does an annual CT & has ordered multiple sputum tests while contemplating whether to treat me. My symptoms are a slight cough & occasional (now) hemoptysis. I walk 2-4 miles, 4 times per week, garden & generally stay active. I faithfully do airway clearance twice a day with 7% sodium chloride & altho MAC is still present in my sputum, I feel very fortunate. Regular CTs, sputum samples, & Dr. visits make sense to me. Take care.

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.

I guess I’m comparatively lucky Auntnanny. My coughing paroxysms pretty reliably occur mid-to-late evening when I become recumbent. For a few loathsome minutes it sounds like I’m about to regurgitate my thorax

I was diagnosed over 4 yrs ago with bronchiectasis & MAC after landing in the ER due to hemoptysis. I switched from a Medicare advantage plan to a supplemental plan to insure that I could go to the medical provider of my choosing. Obviously it is more expensive monthly but I have had no copays for doctors, procedures, or scans. My Mayo pulmonologist does an annual CT & has ordered multiple sputum tests while contemplating whether to treat me. My symptoms are a slight cough & occasional (now) hemoptysis. I walk 2-4 miles, 4 times per week, garden & generally stay active. I faithfully do airway clearance twice a day with 7% sodium chloride & altho MAC is still present in my sputum, I feel very fortunate. Regular CTs, sputum samples, & Dr. visits make sense to me. Take care.

Hi Bee, just wondering when you had hemoptysis how much bleeding did you hv? I had same thing. Scary. I had a clot around the bleed. They took our following day. Thanks, Kathy

@bee1950 Your journey sounds very similar to mine…if I had not had hemoptysis I would not be diagnosed.
I am working on trying to figure this Medicare business out- when you say you changed from Medicare Advantage to a supplemental plan, are you referring to original Medicare with Medigap supplement?

Since my initial visit to the ER with hemoptysis, I have not been back. However the frequency of its occurrence increased over 3 1/2 yrs until my pulmonologist was ready to treat me. When the ID Dr. did not recommend treatment due to my otherwise good condition, I waited & it stopped for about 6 months. Now it is very infrequent perhaps due to using 7% sodium chloride and/or due to the removal of a litter box—both of which occurred around the same time. It’s hard for me to estimate the amount of blood at first occurrence, but perhaps a tablespoon or 2. Take care.

Hi Bee, do u go to ER each time. Only had one episode but dr said I should go when it happens. I only hv Bronchiectasis, no MAC at this point. I hv fibrosis. Do you get the saline treatment only when u hv MAC? Kathy

Hi Kathy,
I have only been to the ER once due to the hemoptysis. Although I’ve experienced it many many times, the amount of blood has not warranted a return to the ER. I have kept my Pulmonologist informed of frequency & about one year post diagnosis, she recommended airway clearance. That now includes Albuterol before I nebulize sodium chloride & use of an Aerobika afterward. My understanding is that airway clearance is important for managing bronchiectasis. Take care.