← Return to Help! Positive testimonials required

Discussion

Help! Positive testimonials required

MAC & Bronchiectasis | Last Active: Mar 8 1:16pm | Replies (55)

Comment receiving replies
@sueinmn

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

Jump to this post


Replies to "Mary, I am no "Suzy Sunshine" but I can say with confidence that you can have..."

Thanks Sue, I know you are one of many… but you have kept me on the right path of being positive and healthy while dealing with mac and bronchiectasis. Thank you for continuing your very supportive and helpful advice and care. I need reminders every once in a while that this is doable and am not alone.
Cindy

@sueinmn Thank you very much Sue. I need to metabolize this condition. It’s difficult to accept to live in a chronic condition. I don’t even know if I will tolerate the therapy, if it will be efficacious at least in the middle term…there are so many scaring question… my pneumologist have said to me that no one ever really manages to eradicate it… For this reason I wrote, hoping to find that he was wrong…

Always so helpful to read your experiences and suggestions. Thank you Sue.
I just wish I knew why I bring up this white foamy, bubbly "stuff." It can be as much as a quarter cup full, of a red solo cup. All the doctors, including Tyler and NJH, so far have said: " Don't know what that is.." Two ENT's did not see sinus or post nasal drip last year. Working on securing a local ID doctor and a pulmonologist locally who does more than say "come back in 3 or 6 months." Why no facility has a team approach with a respiratory therapist on hand to teach a patient the different types of airway clearance techniques is beyond me. Nor has a pulmonologist even asked "do you know the different methods of doing airway clearance breathing techniques......Thank goodness for this site and the internet to watch helpful suggestions to clear the airways. There is nothing like good actual face to face teaching. I would think it is always better with someone saying: "That right or that's wrong let's try again." Thoughts?