How do you explain your disease to the uninitiated?

@snoei I don’t find that the commercials for Brinsupri use scare tactics. Many with bronchiectasis have a very challenging time. Brinsupri is (currently) targeted for this patient population, the frequent exacerbators. You are fortunate that this does not include you, but that doesn’t make the marketing of Brinsupri inappropriate.

You definitely are right about airway clearance being the answer to dealing with Bronchiectasis and MAC. I have been living with both diseases for six plus years as well as Pseudomonas and have been using 7% sodium chloride with my Aerobika twice daily. My sputum samples used to show a lot of MAC but are now showing very few. I credit this to the airway clearance as well as walking 4 to 5 miles daily and eating healthy. I am also on 25 Mg Brinsupri which has helped reduce the mucus production. I feel fortunate at age 79 to be able to live an active life without my lung disease keeping me down. Best of luck to you in your journey.

@ja24 Thank you for the positivity! I was just diagnosed recently and my head is still reeling over this! I am learning so much! When you were first diagnosed, were you on the 3 antibiotic regimen? I will be asking the dr. about Brinsupri. So happy for you that you can live an active life, and your walking distance is impressive...very motivating! Thank you!

@raintyler I sympathize with your situation. At least you knew what to ask for, which is great. I had (had is operative word) a pulmonologist who wasn't listening to my constant complaint of immovable mucus and was sick for two months while he did little despite my requests. So I fired him, got another pulmonologist, and a culture and a bronchoscopy confirmed MAC infection. I drive 2.5 hours to get care - would go farther if needed - altho that's not within everyone's reach.

Airway clearance is key. MAC lives in mucus, BE creates space for mucus to accumulate, and mucus removal is the game. You need a PEP- you can get one on Amazon w/o scrip, Aerobika is best but scrip is required (I'm still waiting for mine to arrive), vest if that's needed. 7% hypertonic saline is best. I specify 7 because my pulm would only give me 3. I researched as soon as I learned the culture was + for MAC and immediately implemented all environmental changes I then read about (I'm a project manager and very risk averse ;-). I've read some ID doctors support environmental controls, some don't. But if I know the primary vectors of transmission are potting soil and aerosolized water, I'm going to avoid them. I now only take baths instead of showers. I turned my water heater up to +130 degrees (MAC grows in biofilm and high heat retards growth), replaced my dishwasher with one that sanitizes, bought a LifeWater bottle and countertop pitcher to filter my water (you need a .02 micron filter). I wear a mask when around people- sometimes just surgical, sometimes N95 depending on situation. Exercise supports airway clearance and your immune system so I exercise daily now altho I couldn't when first diagnosed as I was too sick. I do postural drainage to aid airway clearance - bridge pose is great.

You need a pulmonologist and an Infectious Disease doctor to properly treat (imo) and they need experience in this area. To provide perspective, NTM infection occurs in very low numbers of the population, depending upon the region in which you live. In areas where it's prevalent, it's still only ~30 / 100,000 people but avg's about 20 / 100K nationally. The CCN at NTM Fndn has a list of providers and hopefully one is near you. Otherwise read doctor profiles and look for those which specifically state they treat NTM infection. Interview providers you find and keep searching to find one you can work with and with whom you're comfortable. Best of luck to you.

@raintyler I sympathize with your situation. At least you knew what to ask for, which is great. I had (had is operative word) a pulmonologist who wasn't listening to my constant complaint of immovable mucus and was sick for two months while he did little despite my requests. So I fired him, got another pulmonologist, and a culture and a bronchoscopy confirmed MAC infection. I drive 2.5 hours to get care - would go farther if needed - altho that's not within everyone's reach.

Airway clearance is key. MAC lives in mucus, BE creates space for mucus to accumulate, and mucus removal is the game. You need a PEP- you can get one on Amazon w/o scrip, Aerobika is best but scrip is required (I'm still waiting for mine to arrive), vest if that's needed. 7% hypertonic saline is best. I specify 7 because my pulm would only give me 3. I researched as soon as I learned the culture was + for MAC and immediately implemented all environmental changes I then read about (I'm a project manager and very risk averse ;-). I've read some ID doctors support environmental controls, some don't. But if I know the primary vectors of transmission are potting soil and aerosolized water, I'm going to avoid them. I now only take baths instead of showers. I turned my water heater up to +130 degrees (MAC grows in biofilm and high heat retards growth), replaced my dishwasher with one that sanitizes, bought a LifeWater bottle and countertop pitcher to filter my water (you need a .02 micron filter). I wear a mask when around people- sometimes just surgical, sometimes N95 depending on situation. Exercise supports airway clearance and your immune system so I exercise daily now altho I couldn't when first diagnosed as I was too sick. I do postural drainage to aid airway clearance - bridge pose is great.

You need a pulmonologist and an Infectious Disease doctor to properly treat (imo) and they need experience in this area. To provide perspective, NTM infection occurs in very low numbers of the population, depending upon the region in which you live. In areas where it's prevalent, it's still only ~30 / 100,000 people but avg's about 20 / 100K nationally. The CCN at NTM Fndn has a list of providers and hopefully one is near you. Otherwise read doctor profiles and look for those which specifically state they treat NTM infection. Interview providers you find and keep searching to find one you can work with and with whom you're comfortable. Best of luck to you.

I love the short auto immune explanation that causes a non-contagious cough. Thank everyone for the various ideas. I can see where it could be handy to have several explanations depending on the situation and the person asking. I am newly diagnosed with MAC and this group has been incredibly helpful.

@skygirl , thank you for your thoughtful reply. I am scheduled for a bronchoscopy tomorrow with my local pulmonologist but I have an appointment with a pulmonologist at Penn Medicine’s Harron Lung Center this week (I got in off their cancellation list). The 2+ hour drive will be well worth it.

You definitely are right about airway clearance being the answer to dealing with Bronchiectasis and MAC. I have been living with both diseases for six plus years as well as Pseudomonas and have been using 7% sodium chloride with my Aerobika twice daily. My sputum samples used to show a lot of MAC but are now showing very few. I credit this to the airway clearance as well as walking 4 to 5 miles daily and eating healthy. I am also on 25 Mg Brinsupri which has helped reduce the mucus production. I feel fortunate at age 79 to be able to live an active life without my lung disease keeping me down. Best of luck to you in your journey.

I say that I have a little known chronic lung disease that causes lung damage that leaves me open to lung infection which then can circle back and cause more damage. People that know me well it gets harder to explain about water, I’m still working on that one.