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I was recently diagnosed with Bronchiectasis.
MAC & Bronchiectasis | Last Active: Nov 19 7:40pm | Replies (181)Comment receiving replies
@sueinmn, @gbippy , @alecia52, @colleenyoung, and all...
Well, Goody. I saw my Mayo pulmonologist last week. He diagnosed brachectasis, a new one for me. I have Sarcoid that hit my lungs when I was 40 and have multiple pneumonia, chronic bronchitis, asthma, lots of shortness of breath and low o2 at times. I'm using a bi-pap for obstructive sleep apnea and other sleep disorders, slight automatic neuropathy, forget to breath during the day at times, and ????
This new diagnosis was a surprise. So, I'm researching, asking questions so I know with what I'm dealing.
Doc referred me to pulmonary rehab, wait list due to lots of covid patients. Nebulizer with albuteral. I used it first time yesterday and had med reaction for hours.. I spoke with nurse, then doc called and switched me to levelbuteral, I think. And saline. How does the saline work in nebulizer? Add to med? Does it extend the moist treatment and help loosen phlegm?
Also, added an oscillary positive expiratory device??? Said it's a bit messy getting more junk out of lungs. I coughed up brown/green stuff yesterday. Nothing now since not using nebulizer until get new med Tuesday! Yuck.
Taking 5 days 20 MG prednisone, 1x daily Breo inhaler.
Referred to immunology as I have frequent infections...sinus that required surgery last year with infection non-responsive to any antibiotic, even in nasal spray. I use xylytol nasal spray 1x daily. Allergic to all others.
Testing immunoglobulin levels and expect to begin IVIG Infusions. Had years ago for misdiagnosed MG, but helped a lot.
Shortness of breath is at times very bothersome. I love pool therapy and do that in 94 degree water 2x daily w/pt. Love it!!!!
Walk with walker when strong enough but not lately.
I'm feeling some concern and want more info. Need to understand it all. So, any help and info is appreciated.
Worn out writing this. Headed to bed soon...be well and be blessed.
Elizabeth
Replies to "@sueinmn, @gbippy , @alecia52, @colleenyoung, and all... Well, Goody. I saw my Mayo pulmonologist last week...."
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Hi Elizabeth -
- we currently have a lot of people with bronchiectasis or MAC - I don't know why, every so often it just happens that way. Pretty much EVERY newly diagnosed person has similar questions and concerns - here I hope are a few helpful answers.
All that said, do we know what causes bronchiectasis? Not exactly - but we do know some things that can contribute to people developing it - chronic asthma, chronic bronchitis, frequent bouts of pneumonia, SOME inflammatory autoimmune disorders...
Is it progressive? Generally - taking good care of your lungs and general health can really slow it down. According to my doc, bronchiectasis is generally a disease you live with & seldom something you die from. My Mom had it for many years, but ultimately died of a totally unrelated cause.
What does the saline neb do? Use it second, after the neb to open your airways. The saline will probably irritate your lungs, making you cough more and more deeply to get the mucus out. Saline has also been shown to tamp down on the growth of bacteria in your lungs. Feel free to use the little magnifying glass to search for 7% saline for lots of info.
So, go ahead and read all about it. I suggest sticking to Connect, NTMir.org and National Jewish Health resources for the latest and most accurate info. Here is a quick starting place from the American Lung Association: https://www.lung.org/lung-health-diseases/lung-disease-lookup/bronchiectasis/questions-to-ask-your-doctor
See you on Connect - ask all the questions you would like. It will help our more shy members as well.
Sue