How much time do you spend managing bronchiectasis?

Posted by bronchiectasaurus @bronchiectasaurus, Jun 11, 2025

I conservatively estimate I spend 2 hours a day doing lung protocol stuff for my bronchiectasis. That includes at least 2 long saline nebulizer/Aerobika sessions, 2 nasal lavages, and rinsing, boiling, sanitizing, prepping (such as boiling, cooling, and storing distilled water for nasal lavage), and other maintenance.

I have — or had — 16 waking hours in a day. With all the lung stuff I now have 14. My day has been reduced by 12.5%. It’s worth it, to be able to breathe and reduce respiratory infections, but it has a real impact.

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minute22 | @minute22 | Sep 7, 2025

In reply to @tte "I thought the Pari eFlow was just for Arikayce ? I got one when I got..." + (show)

I also thought it was just for Arikayce and would love to find out if I can use it for levalbuterol and 7% saline as it seems it's faster and quieter. Did you get any info on this?

Sue, Volunteer Mentor | @sueinmn | Sep 7, 2025

In reply to @minute22 "I also thought it was just for Arikayce and would love to find out if I..." + (show)

Please see the FAQ's directly from Pari. I'm not sure which handset is used for Arikayce, but the handsets are interchangeable.
https://www.pari.com/int/products/eflow-rapid-inhalation-system/frequently-asked-questions/

deb2230 | @deb2230 | Sep 8, 2025

I use 7% saline with nebulizer attached to Aerobika 30 minutes session twice a day. No albuterol. My CT has improved over the course of one year.
I boil the equipment once a day while cleaning the kitchen. It drys in a baby sterilizer. I also boil drinking water which takes about 5 minutes a day using the instant pot.
I’m on the big 3 antibiotics. If I continue to stay negative the antibiotics will stop in December. So I would say about one and half hours a day dedicated to the improvement of this disease.

lsm1936 | @lsm1936 | Sep 9, 2025

In reply to @deb2230 "I use 7% saline with nebulizer attached to Aerobika 30 minutes session twice a day. No..." + (show)

Do you have any problems with the "Big 3? Antibiotics just don't like me so I have avoided thus far and my doctor at Mayo says she doesn't really want to use them at this time. I am 88 years old and don't want to spend the rest of my life being down and out daily.

deb2230 | @deb2230 | Sep 10, 2025

In reply to @lsm1936 "Do you have any problems with the "Big 3? Antibiotics just don't like me so I..." + (show)

I do have upset stomach so I take probiotics to help with that. Definitely follow your doctor recommendations. I glad you were able to avoid them so far;)

amap2025 | @amap2025 | Sep 10, 2025

With all 2.5 to 3 hours. I nebulize albuterol, 7%saline and Tobramycin . Plus nasal Lavage amd cleaning/sterilizing. I do get alot done will sitting ,like checking in here. Nebulizong right now!
Peace and good health to all
Ann P