Life Expectancy with cavitary MAC

I hardly cough and when I do, nothing comes up. Had to have a bronchoscopy to get my initial diagnosis (which probed positive). as I could not produce a sputum sample at all. Right now I have no other symptoms, either. My doctor has not said anything about any airway management techniques. I assume that’s because he doesn’t see need at this point. However I see many, many comments here about its importance and it seems to be a universally applied. Should I question my doc?

It may be worth a discussion regarding saline nebulisation but you can Google airway clearance and get information from the likes of National Jewish, NTMir, COPD Foundation and their YouTube clips and webinars. There are different techniques and we each find the one that works for us.
I don't have much of a cough or sputum but airway clearance is lung hygiene. Like cleaning your teeth.

Hi MC, I replace it every 3 months. I had my water tested for Mycobacterium through TapSimple (or is it SimpleTap?) and it came back after several months negative. I still clean my shower heads and stay away from garden dirt without a mask. I mow with a mask, too. Elevating your bed 4” may be the ticket. Good luck and keep us posted.

I was just at National this past spring. They emphasized how important airway clearance/nebulizing is and should be done every day.

Hay MaryCarol, I was diagnosed over 5 years ago. I'm still here! Doing all that I can on my end with air way clearance, exercise, raised head of bed, take baths, boil water drinking water or use Lifestraw, mask when needed, etc. I did have surgery last year. I'll be getting off of meds next month,,,be persistant come what may, you'll get through it!

Airway clearance is like flossing our teeth. Even if we don’t see anything stuck between our teeth we still floss. It breaks up the biofilm and prevents gum disease.

Likewise, it’s important to break up the biofilm in our lungs. When I bring out my daily “weapons” - my vest, saline, and Aerobika, I’m letting those bacteria, fungi and viruses know who’s boss!

Best,
Linda Esposito

So I just got a call from my primary physician and told me that my sputum test was positive for MAC. I have never heard of this and she seemed very vague as she was trying to explain to me what it was. She said it was a bacteria. She did mention antibiotics for the next 18 months. She also said that I will be referred to an ID doctor.
I decided to look this up on the internet. I was truly shocked when I read mortality rate is about 5 years. Then I found this sight. I feel much better reading everyones post. Especially those who have mentioned that they have had this for a while. I'm not sure how I feel. I don't feel bad. The only thing I've had is this chronic cough for years. I do have the head of the bed raised 4 inches because of acid reflex. If this is also in our gut then it kind of makes sense as to how I might have gotten this. I appreciate all the comments that I have read. Thank you.

Kudos to your primary care physician for finding your MAC.
I was diagnosed almost 2 years ago and and the pulmonologist referred me to an ID doctor. I was told by both to start treatment but declined since I didn’t feel sick. The good thing is the pulmonologist had me start nebulizing with 7% saline. I have since gone to NJH and have found a local pulmonologist specializing in bronchiectasis and MAC. People on this forum helped convince me how important airway clearance is and I nebulize 7% saline twice a day. When I went to NJH almost 9 months ago, my sputum did not show MAC. I know it can come back and I am careful to take precautions I have learned here. I have not taken antibiotics.
I do not have reflux but others here that do may have suggestions for you such as raising your bed higher.

Hello, and welcome to Mayo Connect. We have a wonderful support group here to help one another deal with our journey with MAC and Bronchiectasis.

First, let me reassure you that unlike many other infections, most MAC infections are very slow to grow and expand, so a wait to see your new doc need not be too concerning.

Here are a few discussions you might find helpful as you wait to see your ID doc:
https://connect.mayoclinic.org/discussion/macntm-is-different-for-everyone-treatment-might-be-different-too/
https://connect.mayoclinic.org/discussion/find-an-expert/
Has the doctor talked to you about airway clearance techniques to get the mucus out of your lungs? If not, you might need to see a pulmonologist for this.
Sue

While it might be hard, please try not to let this number live in your head. At 13 years since diagnosis (and I probably had it for a year and half before that), I know this number to be only a statistic derived from some study that evidently doesn't apply to me. Maybe it doesn't apply to you either...