How do you explain your disease to the uninitiated?

@sueinmn
Thank you for that resource. I have a lot to learn. I’m located in southern Delaware, about 2+ hours from both Baltimore and Philadelphia.

@coffcoff
Thanks for the suggestion but I am on the east coast and Denver wouldn’t be feasible. I am trying to get my PCP to complete the required referral to Johns Hopkins NTM and BE clinic. I live equal distances from Baltimore and Philadelphia (2 to 2 1/2 hrs).

@jessed Just diagnosed (age 65) but relate to your saying you probably had is 10 years before dx. I feel the same way; that I've had it a long time wo anyone paying attention. My CTs were showing "chronic infection" but PCP and initial pulmonologist treated as asthma to no avail. My fault for not finding another doc. Can you share your tricks for not letting this chronic illness get the best of you?

@pgpunch
We had common experiences.

Great question. Thanks!!! Hmm. Today I am slacking but your question got me back on track!

Tips to keep BE-Mac chronic illness from getting the best of me,
1) our middle son’s philosophy: “mom, We all have something but we still prevail.” He has schizoaffective disorder, a severe and chronic mental illness and lots of meds.
2. A pulmonologist at UNC chapel hill gave me hope and a good plan. She said it was slow growing and that “I would die w it but not from it.” I believe her. If I have a plan I’m usually golden. Marcie Wiener’s recent webinar and Dr Pamela McShane’s tips and this group have been so helpful. Thanks for asking. You helped me! What helps you?

@jessed Glad I helped in a small way - u never know what’s around the proverbial corner!
My way of distraction is putting myself out in nature. Thank you for sharing your personal life’s learnings! I hope your son is finding relief

@pgpunch. You did help me. I felt so much better after I did my airway clearance. Yes, nature or just hanging out on our balcony fussing w my flowers is my respite also. Thanks for kind thoughts 🙏

@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.

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.

@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.

@pgpunch
LOL I thought of that, too, but decided to just say, " It is a rare lung condition that is not contagious, but makes me susceptible to infection"
I was just diagnosed as well. I have just begun treatment a week ago.
Someone else said it well....others' eyes glaze over and they just can't take too long of an explanation!