Advice for recently diagnosed with MAI

@soniar Welcome to Mayo Connect and our great support group. I am curious about how your MAC was diagnosed, whether you also had a Ling CT, and whether you have seen a pulmonologist.

There is a lot more to keeping healthy with MAC than periodically checking in with the doctor.

Has anyone suggested what underlying condition may have made you susceptible to infection? Or talked to you about airway clearance to help minimize the infection? Do you have any other health conditions?

Thank you for your response Sue. My pulmonologist had me do a sputum test, a blood test and a pulmonary function test (the latter was normal. Presumably the blood test was also normal since nothing was mentioned). I have had pneumonia a couple of times when I was younger and this very bad coughing episode twice. Both times these episodes lasted 5-6weeks. One coughing episode was five months ago and the other twelve years ago.
No other health condition. I'm a 64 year-old woman with generally good health. No talk about airway clearance. Really appreciate your help.

It is common for docs to do a CT to determine how much the lungs are impacted. Have you had one?
Were you cultures positive in all 3 samples?

Yes, a CT scan was done. I gave three samples (a day or so apart) but was not told if all three were positives. He just said the sample was positive.

Once I was diagnosed with BE, Bronchiectasis, the local pulmonologist told me I should buy an Acapella. He gave me an instructional flyer on how to use it that appeared to be a instructional flyer that the pulmonology dept. gives out. Therefore I had no direct instruction from him or instruction from a tech in the department and then when I bought it the paperwork from the manufacturer specifically indicated your doctor will instruct you and tell you what setting to use. Did not happen.
He also said to see him in 6 months. I went to him for a year and not once did he do or show me how to give a good sputum for testing for a possible infection. I was brining up sputum constantly and he observed that each time I had an office visit with him because I constantly carried a cup that I removed the sputum in when clearing my throat. However as of that time, and presently, I have not had a uncontrollable coughing spell/exacerbation.

After a year with the local pulmonologist who was lacking in directions to me, I went up to NJH when I realized I needed their expertise and direction that they give. That is when I found out I had MAI. I was told the antibiotics were not being prescribed at that time because my MAI was low. It was a 'wait and see, watchful waiting'" approach.
At the time at NJH and presently, 1 and a half years after NJH, my MAI load continues to be low and I have not started the antibiotics, my choice at this time.
I am fortunate that overall I feel well, no fatigue etc. at 82 and 5 months of life. I may have a small hiatal hernia, that is the only other possible health problem I have at this time. NJH indicated small hiatal hernia however I have no typical symptoms for it.
Yes, I also had pneumonia, two types at the same time in the 1980's.

With BE, Bronchiectasis and MAC/MAI I believe it helps us to find our way to loosen the mucus and make it "juicy", as one person on Mayo put it, to help remove the mucus (nebulizing etc.) and finding our way also to all the methods of airway clearance that are discussed on the internet and on this Mayo site.
I have found that it definitely is best to do the therapy two times at day morning and afternoon.

I also had to assume that my blood work was fine due to the BE specialist I began seeing in Texas did not discuss it with me after the test results came back. I had to specifically, on my follow up visit three months later, bring up the subject of the blood work. I did need clarification due to the results and my concerns with what I saw being said....low in some areas, high in over areas and what I read about the results on the internet at reliable sources.
So glad you found your way to this site and so many of us have after learning the news we never wanted.
Barbara

I too, am recently diagnosed with MAI, discovered by accident during the hunt for lung cancer. I am asymptomatic with extreme fatigue from it. I am 69 yo female, long childhood, adult history of pulmonary issues. So my xrays and CT scans show the battle scars. Clean bill of health with my heart. I was referred to an ID. He immediately wanted to do the big three. Didnt give me an option of doing yearly surveillance. Did the meds for 8 months, did CT scan and showed no changes. I have now stopped the meds and the doctor has dismissed me from the practice for being non complaint. Pulmonary has no experience with MAI but agrees to do the yearly CTscans. I have not been given any education, so i researched on my own. I am worried now because i am short of breathe. I am living my best life and limiting my exposure. But i am told this will be with me forever. This site gives me the most support and gives me advice as to what to discuss with my doctor.

@circleup Don't you just hate it when docs dismiss you instead of working with you on a solution? My first pulmonologist did that, but it turned out to be a blessing in disguise - the ID doc referred me to a better pulmo, who works nicely with a team.
I am so glad the members here have been helpful.
Are you doing airway clearance every day? Using saline ?