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What is your Top Question about MAC and Bronchiectasis?
MAC & Bronchiectasis | Last Active: Jul 19 3:25pm | Replies (59)Comment receiving replies
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.
Replies to "I had NTM in 2002 - resolved with 18 months of antibiotics & macrolids. I now..."
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
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.
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Have you been treated for the aspergillus? Untreated aspergillus could slow you down and make breathing difficult.