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Cleaning nebulizer/aerobika

MAC & Bronchiectasis | Last Active: 1 hour ago | Replies (14)

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Profile picture for Sue, Volunteer Mentor @sueinmn

@kate2025 Kate have you seen this talk by Dr Jennifer Honda (at the NTM Conference) about reducing the burden of living with Bronchiectasis?


It is well worth watching, especially the concept of picking a few critical things and letting the rest go. I know that when I was first diagnosed with BE, MAC & Pseudomonas, I was scared!
I found reading "too much information" and trying to do everything exactly right was driving me to high levels of anxiety.

My beloved PCP spent hours trying to calm me and get me to take a more reasonable approach. Finally, my ID doctor sat down and talked quite bluntly to me - his words were almost exactly the same as Dr Honda's - but six years earlier, in 2019. First, he said, "Bronchiectasis is a disease you will live with, but not die from." Then he said, "Pick the most critical things and let go of the rest."

Here are the things he said were most critical:
- Exercise, eat well, get plenty of rest.
- Stay away from sick people, wear a mask when you cannot. (This was pre-Covid)
- Do your airway clearance and keep your equipment clean. (He did not say "sterile")
- Take prescribed meds.
- Call your pulmonologist when you get a respiratory "bug." ( I have an exacerbation care plan)
- Stay out of indoor swimming pools, steam rooms, hot tubs and saunas where water is used.
- Stay away from "Dr Google" and get your instructions from your docs and one or two reliable sources. (I haven't met a doctor yet who thinks we should ask AI what to do)

Being cautious is great, but not when trying to "do everything" takes over your life. Do you have someone you can talk to about how to simplify your routine while still staying safe?

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Replies to "@kate2025 Kate have you seen this talk by Dr Jennifer Honda (at the NTM Conference) about..."

@sueinmn what is the problem with indoor swimming pools? I like to swim in one where I live in Florida because it’s out of the sun

@sueinmn yes I did watch. Very helpful. I am more cautious I think than most for sure!
I do eat well, get exercise and working real hard on a steady sleep routine.
I don't have any prescribed meds except the 7%sodium and trying to take my daily vitamins and supplements (although not everyday am I successful at taking them)
I am retired so not really around people too much. Hubby still works.
Love outdoors pools once in awhile if we go on vacation. Enjoy my flower gardens but now with a mask.
Enjoy family but no known sick people allowed - but obviously don't always know if you e been exposed.
Filter drinking water, cautious with hot steam for dishes and baths.
I think I'm doing a pretty good job. Just got scared and overwhelmed with sterilizing after every use as when I first joined other groups.
Followup with pulmanologist in December so hopefully he still thinks I'm doing good things.
He told me no need for every 6 month ct or sputum
Samples unless symptoms change, get sick or sputum changes like I've read so many people test a lot!
Anyway, always appreciate your wisdom and time.

@sueinmn, Amen!