Help! Positive testimonials required

@mary80 Are you beginning to see that many of us live full lives with these conditions? When I was at my lowest ebb emotionally, my ID doc sat me down and said "This is a disease you can live with. It is exceedingly rare to die from it. Take reasonable precautions, then go out and live your best life."

That was 5 years ago, I stopped the meds over 4 years ago. A year later, my trusted PCP repeated the message and pushed me to form a Covid bubble with family and a few close friends instead of being totally isolated. But I still keep my asthma tightly controlled, do daily airway clearance and use 7% saline a few times a week to keep down any germs.

I am past 70 and have had lung issues for many years although I was not diagnosed until 6 years ago. I have had only a few exacerbations in the past several years - in spite of Covid, travel, and spending a lot of time with 2 young grandchildren. By the way, I could run with them when they were small, but they are too fast for me to keep up with now - but we still climb rocks and do many other activities together.

Hang in there, it gets easier to manage as you learn how your body handles things. And stay away from websites and Facebook pages that make you fearful. You can find great information here and on some other research-based sites like NTM Info (https://ntminfo.org/what-is-ntm/)
Sue

Karen, my experience is very similar to yours. Spring of 2021 my pcp recommended a scan to get a calcium score because of my family history. Heart was fine but places discovered on my lungs. She suggested a follow up scan 6 months later and they were still there so referred me to a pulmonologist who diagnosed bronchiectasis and suspected NTM. I was experiencing no symptoms, didn’t cough up anything. Had a bronchoscopy and it confirmed NTM. Sent me to a ID doctor and both wanted me to start the antibiotics right away. I refused. Went to NJH and then found a nearby pulmonologist who specializes in bronchiectasis. I produce sputum now but NTM does not show up, yet my last CT showed my lungs were worse. Will see my doctor next month and see what is recommended after latest cultures come back. I am 66.

I have seen an ophthalmologist twice since I began the Ethambutol last June. Thus far, no vision issues. Fingers crossed!

Yes, it’s hard to say if MAC was there for all those years and we just couldn’t get a positive culture. And there are people with bronchiectasis who don’t have MAC. Also, you wouldn’t want to be on this medication regimen, with all the potential side effects, unless really necessary. It’s a puzzling condition. MAC can cause bronchiectasis, but having bronchiectasis can cause you to get MAC. It seems it can be difficult to determine which is the cause and which is the effect.

@sueinmn , I'm worried because I’m 44 years old and a long war awaits me... assuming I manage to get cured with a long therapy, then what kind of life will I be able to have? Given the fact that we are talking about ubiquitous opportunistic germs, the possibility of catching them again, sooner or later, is almost a certainty. I live in the countryside and I am surrounded by land. The wind or a tractor plowing the fields raises mountains of dust... should I leave my house and move to the city? But the risk is still there, with tap water, water vapor, the shower head... Should I boil the water before drinking it? But what if I wash fruit, vegetables, or brush my teeth? And if I go on holiday how can I do with the water? I will never be able to go to a thermal pool, etc... it seems like a losing battle because too much effort has to be made to protect oneself, with absolutely no guarantee of success. and if you let yourself be influenced so much you can no longer have a normal life...

Thank you, that makes me feel better about starting the meds.

Were you able to, or did you, take Paxlovid?
I had Covid for the first time this Feb.
I took Paxlovid because of the BE and my age (81+) although all tests indicate my overall health is good. No MAC so far. I just thought I had to take it with the BE and my age.
I didn't want to take it but not knowing all outcomes with having BE and 'elderly' I took it.
Thoughts of those who had Covid and the decision to or not to take Paxlovid?

Mary, I am no "Suzy Sunshine" but I can say with confidence that you can have a very normal life with Bronchiectasis, it just takes some mental and physical adjustments.

I will compare it to my husband, who was diagnosed with diabetes and rheumatoid arthritis in his 40's. (Oh, and he has bronchiectasis from the RA, too.) Thirty years later, he's still hanging in there! He adjusted his diet, keeps his weight down, takes his meds and exercises.

Let me start with this - I daresay we were all scared and depressed when we were diagnosed. Then we went to our computers and read DIRE stuff. But the people here can tell you, we learn to deal with it.

Let's start with living in the countryside - if you have a well, have it and your household water tested - quite likely you do not have NTM in your taps, so you can relax - no boiling, no shower issues, no worries about washing...
For the dust issues, we have installed HEPA filters in our house, become a no-shoes indoors, replaced carpet (over time) with wood and tile to keep the indoor environment as clean as we can. We do close the windows and run the fans on windy days to help.
As for outdoors, think of it like this - we have been walking through the air for a very long time and cannot avoid it, so we protect ourselves from concentrated exposure - dampen soil before gardening to keep dust down, wear an N95 mask when clouds of dust cannot be avoided (like mowing lawn, helping cut hay or raking leaves) and generally be sensible.
As for water sports - I swim in outdoor pools and salt water. I paddleboard in fresh water lakes. If I was at a thermal springs I would most likely use it - just double up my saline nebs for a few days to wash anything out of my lungs.
Reinfection - many of us in this group have found 7% saline nebs and daily airway clearance keeps us safe. I have remained infection-free for over 4 years, and only had a couple of exacerbations that required short-term treatment. I introduced an acquaintance at church to 7% saline last winter and her husband calls it a miracle - for the first time in 11 years her chronic cough is minimal, and she has not needed treatment with antibiotics for a year.

Long-term Maintenance - now that I have been infection-free for a while, I use a mucus thinner to keep mine flowing and not sticky. I use my inhaler twice a day. I do airway clearance once every day, or twice if slightly congested, using saline first about 2-3 times a week to keep down bacteria in my lungs. Airway clearance takes 10 minutes (20-25 on neb days) which I do as I am at my computer. I wash my Aerobika & Nebulizer daily & sterilize once a week.

If you are having trouble coming to terms with the concept of a chronic condition, it might be helpful to seek out short-term counsel. But rest assured that a normal life is entirely possible - it just may have a few features you hadn't envisioned before.
Sue

Take heart. You can still live a normal life and have a long life span. It is not easy to find a good pulmonologist, but to find one who has treated MAC and BE is essential. You will have to ask around. Please ask us any questions you have now or in the future.
It is important to use Airway Clearance. National Jewish Hospital has recently led me to therapy treatment including nebulized albuterol, nebulized saline, with both of these using the Ombra compressor to deliver the solutions, along with the Aerobika breathing device. And then there is the SmartVest if your doctor advises it.
I am 76 and have caught in these past two years from my grandchildren who are in daycare not only a flu causing chest infection, but stomach bug, and Covid. If your children are in daycare, you can disinfect their hands when they come home, keep your surfaces wiped down, and even wear a mask when they have a runny nose or you are alerted that there is a sickness going around in daycare.
And try not to worry.

I am 76 and had Covid for the first time in December 2023. My doctor said I could take Paxlovid
(my son did when he had Covid), but she said it was hard on the kidneys so I chose not to.
My son said Paxlovid helped him.
It is hard to know......we always hear different recommendations.