What is your Top Question about MAC and Bronchiectasis?

I had NTM in 2002 - resolved with 18 months of antibiotics & macrolids. I now have bronchiectasis and have had six pneumonia events in past 18 months.Does anyone ever feel like there is a major block in your airway and lungs to oxygen even when your oxygen levels are at normal levels. It's as if when I breathe in deeply, it is painful in the morning. I notice that my heart rate is always up at these moments, even though I have had my heart checked out by a cardiologist and everything is normal. I do not have sleep apnea. My bp remains stable. I feel like I am literally dying at times, I feel so weak. I am using my nebulizer daily and watching the sputum color, which is clear to light yellow. I am on supplemental oxygen and use oxygen at these moments and of course upon activity. I have an appointment at NJH at the end of August and their times I feel at times like I'm not going to make it until then. Nothing seems to add up. I have Aspergillus with no treatment. I've signed up for airtivity study - waiting to see if I'm accepted. Any comments that might help would be much appreciated.

Have you been treated for the aspergillus? Untreated aspergillus could slow you down and make breathing difficult.

Thank you - I saw an ID who said he didnt feel it needed treatment. I keep thinking this is the very thing that is causing all my weird symptoms- i guess I'll have to wait until I get to NJH to get decent treatment.

I use medela micro steam bags in the microwave, because I too got tired of boiling. So far, no mac for 3 years. Only steam aerobika a couple of x a week. not sure if this is “great” practice. daily sterilization of nebulizer tho.

Thank you. I will try that when the time comes. I just hope I don’t go into a coughing fit with too much mucus build up.

For me, you are the top few questions
Is profuse a.m. mucus upon waking a good or bad thing question. Does it accumulate after using clearance Devices and just show up in the morning. It’s very confusing.

I have the be in three lobes and very scary. They made the diagnosis about a month ago after almost 2 years of pneumonia during which time they recommended hernia surgery and sinus surgery, which I had.
After each surgery, my pneumonia continued and accelerated this past year from one to three|lobes
In the first few months of treatment in 2024, I developed an abscess of the right upper lawn with process and cavitation along with be
I’m doing airway clearance twice daily with three devices finding for the first time that I feel stronger in between the treatment, but I do worry about Progression of the underlying pneumonia thank you Jill Crawford
Why would that happen in one year?

Like you, I had almost a two year bout of continuous pneumonia and felt extremely weak to the point where I kept falling from instability
I think pneumonia just in general makes you weak and leave you weak until you fully recover if that ever happens
But I do kindly feel that doing aerobica -plus vest
Plus nebul8zer 2xday Helpful.
Between these two times I am much more energetic, breathing easily and not weak at all. This lasts until late evening when I have to restart my routine. I also make sure I do at least half an hour of walking each day and I try Ramp up the intensity. Regards, Jill

I’m curious if anyone finds the smart vest and nebulizng sufficient to clear air ways or is the aerobic still used and helpful?

I think that if you polled 100 people here about their airway clearance process, you would get at least 50 different answers.
Are you still having issues clearing your airways? Do you use the vest while you nebulize?

My best trick (I don't use a vest) is to use my inhaler & nebulize saline first, do some activity - exercise, yoga, PT, housework or weeding - for 15-30 minutes, then clear my lungs.

Dr Pamela McShane suggested the "pause" between nebulizing and clearance to allow the solution to penetrate throughout the lungs and help to loosen mucus. She also suggests exercise to further move things.

This makes so much sense. Thank you. Trying to get it "right", especially as our conditions change due to an exacerbation or other health issues, it always helps to have one more tool in our tool box.