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Newly-diagnosed with Bronchiectasis and shocked

MAC & Bronchiectasis | Last Active: Feb 13, 2022 | Replies (13)

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@sueinmn

@discerning1 and @karissy I think most of us were shocked by our diagnosis. I certainly was frightened when the pulmonologist dropped the diagnosis on me and told me "you can look it up on the Internet" - and I started to search. What luck that I found my way to Mayo Connect and got so much support from the other members here!
I want to let you know that things are not as dire or scary as they might feel right now.
Here are the things I have learned:
Not every infection requires antibiotics - there are guidelines for treatment, and many more conservative approaches available in some cases.

Many doctors, even pulmonologists, are unfamiliar with bronchiectasis. It is important to find someone familiar with it, or at least willing to consult the experts.

Bronchiectasis, according to my second & wonderful pulmonologist, is a condition you can live with, often for a very long time, by making some lifestyle changes to stay healthy.

My 4 big changes were - stay out of and away from hot tubs, use extreme caution with soil, peat & mulch (I'm an avid gardener), do daily airway clearance, and stay healthy with diet, exercise & avoidance of sick people. Even before Covid, N-95 masks were my friend during flu season & when doing emergency daycare for little grandsons when ill. Other people, whose disease is perhaps more severe than mine, or by nature are more cautious, take more precautions. You will need to figure out what works for you.

Airway clearance has been my best tool, and I learned about it here and through National Jewish Health (NJH) videos. The approach to airway clearance depends on the severity of your disease. In my case, there a 5 "tools" - mucolytics to thin mucus (Mucinex 600 LA & N acetyl cysteine 600 MG 2xdaily), daily 7% saline nebs, lots of water, huff coughing to bring up mucus, and if needed a PEP vibratory device (Aerobika is one) to loosen the mucus.

What recommendations did you get from your doctor when diagnosed?
Sue

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Replies to "@discerning1 and @karissy I think most of us were shocked by our diagnosis. I certainly was..."

I also use the aerobika, supposed to do it daily to bring everything up and keep my lungs cleared, but it makes me so miserable and I hate it. It’s like the mucus never ends, I usually do it until the rattling in my chest stops. I just found recently that I also have a mild dilation of my aorta and it scares me that I put all this bodily stress on myself to clear my lungs and that now it may be damaging my heart.