Help! Positive testimonials required

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

@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...

I have had Bronchiectasis most of my life. I never knew it until 2005. The 2 NTMs I had then required surgery. I got no help with both NTMs here, so I went to National Jewish in Denver. They found the bronchiectasis, and also cleared up the two NTMS, after 18 months on meds.
I did fine. I retired, then cared for my grandson everyday while his parents worked. I did that for 3 yrs. I have MAC now, not treated.
I Always aware that I need to take time when I need it. I am now 73. I now have scar tissue in lungs from NTMS. I always do the clearance. I can't use saline. I try to stay active. I still go out, shop, see friends, with a mask! Try to be with my grand kids as much as I can.
I hope you can see that although you can have times when you catch a bug or two, a culture is done, and antibiotics clear them up.
You will get a routine for your clearance. Making sure to take time to rest if you need it. Its hard, I know , with two little ones. This site is the best for learning and asking any questions you have.

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?

@mary80 Oh my goodness! You are full of anxiety about this - and rightfully so. What to do? That is the 64 million dollar question. And how do you know it won’t come back? We live breathe and eat with MAC every day. Such an unwanted guest for so many! How rude! Being 44 might be a blessing in disguise as your body is better equipped to deal with it. Just maybe you are lucky! Start eating a Mediterranean diet or a plant based diet now! I spent my adult life being a grazer- and then eating off of people’s plates as a mom trying to do everything. Good nutrition and Vitamin D are key! The MAC journey is not an easy one but there is light at the end of the tunnel. Make sure you have a pulmonologist and an infectious disease doctor. Do not let MAC define you. Do the medication if necessary. Wear an N95 mask in situations where you are highly exposed like out in a field or being anywhere where there is a lot of dust. Ditch the thermal spa ( hot tub) if it is inside. Life advice - Be moderate in all things. If it turns out the meds make you sick or don’t work, try Arikayce. It is an inhaled medication (somewhat time consuming), that cured my MAC. I was shocked truly because it took over five years of on again off again oral medication. But it is gone and hasn’t come back, and that was in August of 2022. Wishing you strength and piece of mind about it. The good God has your back -,your front , your arms , your legs- all of you including your lungs!! Wishing you all good things. Just being 44 tells me you will beat this! Irene5

I did not take Paxlovid, but not because I didn’t want to. We were not sure how long I’d had Covid and it must be given within the first five days of getting sick. I’d just started getting over a cold, so at first I thought I still had the cold. I did talk to my nurse about the situation, she agreed that I shouldn’t take it. My husband did take it and it helped him greatly! No side effects for him. (There are certainly medicines that can not be taken along with Paxlovid, so he had to stop two of his meds.)

I hope you will be well very soon. My husband and I still have lingering feelings of a slight head cold. I look forward to warmer weather!