How much time do you spend managing bronchiectasis?

Posted by bronchiectasaurus @bronchiectasaurus, Jun 11 9:26am

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.

Interested in more discussions like this? Go to the MAC & Bronchiectasis Support Group.

jill6063 | @jill6063 | Jun 15 4:12pm

In reply to @sheila7a "Hi 10-15 minutes of aerobika? I soak in hydrogen peroxide. I tried alcohol a couple of..." + (show)

I haven't tried the peroxide but read that's it a fine technique also - just have to soak for 30 minutes, so a bit longer.

rozie83 | @rozie83 | Jun 19 3:07pm

An interesting thing happened this morning. I was diagnosed with BE less than two years ago. I have not had a lot of mucus coming up even with use of devices and twice a week practice of Qi Gong with a wonderful practitioner on line. I walk at least 3 miles daily. After my walk this morning I started to cough and cough up more mucus than I have ever produced before. It continued for several hours when I started my Qi Gong class. I still have some but not like this morning. I was very glad to have this happen. When I hear what so many of you do to help keep your airways clear, I am frightened. This kept me home for several hours. I have new empathy for those of you who spend so much time caring for your needs.
Roz

Sue, Volunteer Mentor | @sueinmn | Jun 19 8:22pm

In reply to @rozie83 "An interesting thing happened this morning. I was diagnosed with BE less than two years ago...." + (show)

Roz - That can be really frightening the first time it happens! It is truly a mixed blessing - we know we need to eliminate the mucus, but it sure interferes with life doesn't it?
Have you been diagnosed with MAC/NTM? Have you done a sputum culture lately? Now might be the perfect time, since your body is naturally producing mucus for you to submit.

PS Now, years after infection and treatment, I seldom produce much mucus. So I have a standing order from my pulmonologist to submit 3 specimens whenever I can produce them. We are in a hot, humid, smoky, high-pollen situation right now, so I will be doing extra nebs this weekend trying to get a good sample.

rozie83 | @rozie83 | Jun 19 10:11pm

In reply to @sueinmn "Roz - That can be really frightening the first time it happens! It is truly a..." + (show)

Thank you, Sue, for your comments and suggestions. My pulmonologist is only seeing me every 6 months. I will call her, however, and ask if I should get another sputum culture...I've only had one in a two year period. I am also going to relay the information about the increase in mucus. Roz

Sue, Volunteer Mentor | @sueinmn | Jun 19 10:44pm

In reply to @rozie83 "Thank you, Sue, for your comments and suggestions. My pulmonologist is only seeing me every 6..." + (show)

People on antibiotics for MAC usually have sputum cultures done every 2-3 months to determine whether the infection has subsided. Please do ask for a culture soon. You do not need to see the doctor - it can be dropped at a lab to be sent for proper testing.

pacathy | @pacathy | Jun 20 5:14am

In reply to @rozie83 "Thank you, Sue, for your comments and suggestions. My pulmonologist is only seeing me every 6..." + (show)

My pulmonologist has a standing order for a sputum culture for me and I keep cups on hand. Like you had been, I produce little or none most of time. You might ask about the standby order when you call. Good luck to you.

wsbme74 | @wsbme74 | Jun 20 7:38am

In reply to @sueinmn "Unfortunately, hydrogen peroxide doesn't kill NTM. Neither does vinegar unless you soak for at least 24..." + (show)

Hi, Sue. What sort of soft brush do you use on the Aerobika, and how? Thanks!

kathyjjb | @kathyjjb | Jun 20 8:43am

In reply to @rozie83 "An interesting thing happened this morning. I was diagnosed with BE less than two years ago...." + (show)

Who do you practice qi gong with online? I used to years ago and would like to start again. Kathy

Sue, Volunteer Mentor | @sueinmn | Jun 20 9:43am

In reply to @wsbme74 "Hi, Sue. What sort of soft brush do you use on the Aerobika, and how? Thanks!" + (show)

I have a set of 5 long-handled bottle/nipple/drinking straw brushes on a ring. No idea where I got them - I use several in cleaning my devices.

PS I sanitize the brushes (along with our dishes, glassware, cutlery and almost everything else) in my dishwasher on the hottest setting, which maintains temps of 165-180F for 30 minutes. We were able to measure the internal temp with an industrial calibration probe my husband has had for many years.

wsbme74 | @wsbme74 | Jun 20 10:26am

In reply to @sueinmn "I have a set of 5 long-handled bottle/nipple/drinking straw brushes on a ring. No idea where..." + (show)

Thank you! I soak my aerobika in clear Dawn and agitate it, followed by the Bololo sterilizer. But, as is common to find out with the management of this disease, there’s always more one can do!

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