What is your Top Question about MAC and Bronchiectasis?

I had two cataract surgeries last year. I just put the Aerobika away for the first 5 days each time and did gentle huff coughing. It worked fine.

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.

6 weeks is a long time to wait. I'd suggest contacting your ID and/or pulmonologist to notify them by call, MyChart message or appt.

You mentioned using oxygen. What is your saturation during those feeling of doom/going to die? Do they happen in certain positions or while walking? Some people have saturations that are fine at rest but drop sharply with activity.
Lastly, is you oxygen portable enough to have while you're at Denver's higher altitude when you go? Hugs to you.

Thank you for your reply. The days that I feel so weak I do nothing literally but lay on the couch with my oxygen. My sputum is clear so I guess there's no infection, and I nebulize every day. I called my pulmonologist and talked to the nurse so that she could send a message to the doctor and I heard nothing back. I live in a rural area where pulmonologist are obviously overwhelmed. I do have a portable oxygen concentrator that I can carry with a strap over my shoulder to Denver. I am hoping that NJH prescribes the new drug brensocatib as it is due to be approved by FDA Aug 12 I believe. Either that or I get accepted to the phase III airtivity clinical trial. I continue to do everything I can to eat protein, fruits, and vegetables every day. Three months ago I used no oxygen, was walking 2 1/4 mile twice a week, riding my recumbent bike twice a week and doing floor exercises twice a week. I now am on oxygen and it takes all that I have just to walk that 2 1/4 mile once every two weeks - it just feels like a rapid decline. I'm shocked literally at this turn of events.

I suppose they must have tested your blood gases? Could you have hypercapnia? It causes great fatigue.

Thank you for this insight. I know that i shallow breathe because deep breathing causes me to cough. The drs here are just not up to the level of knowledge they need to be for my case, or they're just overwhelmed with patients, i'm not sure. I am just going to do the best I can until I can get to NJH at end of August.

6 weeks is a long time to wait. I'd suggest contacting your ID and/or pulmonologist to notify them by call, MyChart message or appt.

You mentioned using oxygen. What is your saturation during those feeling of doom/going to die? Do they happen in certain positions or while walking? Some people have saturations that are fine at rest but drop sharply with activity.
Lastly, is you oxygen portable enough to have while you're at Denver's higher altitude when you go? Hugs to you.

My thought is to call NJH may be there is a cancelation. Call your ambasssador and leave a message how bad you are and that you cannot get help locally. May be may be just try

Good God, I have been in touch with my doctor. I am not nearly as sick as the folks here. All good, thanks.