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Cleaning nebulizer/aerobika
After some thought and prayer about a compromise in daily routine of cleaning and sterilizing with what risk tolerance (or honestly lack of it) I have here's what I've decided to do as a routine. Any thoughts? And to note I DON'T have MAC or other bacterial infections I'm fighting.
AND any thoughts on boiling more than one set together (obviously then can't keep separate to know how long each is being used).
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Here it goes:
1) 1st day after am use - wash and soak and rinse then put in Bololo with auto sterilize/dry with boiled distilled water.
2) after pm use - same thing
3) 2nd day - am use - wash and soak and rinse then put in Bololo with sterilize/dry with boiled distilled water.
4) 2nd day pm use - wash and soak and rinse and then take the sterilized set out of the Bololo and boil both sets with IP in distilled water.
And when done because I have the wabi mini uv cabinet, I will add both sets to the uv cabinet
5) 3rd day start process all over again ...
So basically wash and soak and rinse each session, sterilize/dry day one and am of day 2;
And after end of day 2 wash soak rinse and boil both sets and put in uv cabinet
At least this way sterilized each day in Bololo; boiled every other day and still getting double use by putting in uv cabinet which can sterilize and dry and can uv every 3 hours for 9 hours so gets the benefit of overnight
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It's still overkill by manufacturer recommendations, but not as extreme as boiling after each use OR using the pressure cook cycle on IP.
Thank you everyone for your ongoing support. 🙏❤️
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Well, I've personally found that simple is better. I have a "set" of equipment to use for each twice a day session. I wash each after use then put them both in the baby bottle sterilizer at the end of the day to run. Next day, they are ready to go again.
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6 ReactionsI see no reason to boil and use Bololo. Either method (assuming 10 min boil) kills the MAC and I'm not sure what sanitizing twice would help. I prefer Bololo since it decreases the chance of contamination by handling. I put equipment in there and leave it until next use. When I boiled, I had to get equipment out to dry-increased chance of touching and contaminating and paper towels are clean, not sterile. It's a good method if space is limited, for travel, etc.
I also prefer not handling so much boiling water-burns hurt.
Everyone has to figure out what they're comfortable with. It's your decision if you need to double sanitize.
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1 Reaction@pacathy understand 😊 I'm sure it's overkill just trying to "unlearn" a little when fear caused anxiety and overwhelm. Focusing on good solid info like Dr McShane's talk and other reputable info health experts have talked about - risk levels and learning to live life with adjustments.
Thank you so much. Happy weekend!
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2 Reactions@cwal
ditto I do the same.
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1 Reaction@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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6 Reactions@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
@sharonednaramsey High concentrations of NTM in and around indoor swimming pools due to limited ventilation.
https://www.bronchiectasisandntminitiative.org/BronchandNTM360social/Community-Discussions/Blog/Article/172/Summer-Precautions-for-People-with-Bronchiectasis-and-NTM-Lung-Disease
@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.
@kate2025 I have lived with Bronchiectasis for going on 8 years, and must say I have relaxed a lot. I figure that as long as I don't start getting exacerbations, and my lung function stays good, I am doing enough.
Using the philosophy promoted by Dr Honda (and my pulmonologist, a BE and asthma specialist, here are my precautions:
I use filtered water, keep the hot water heater above 135f to minimize NTM growth, and take short showers with the vent fan running, but I don't fuss about boiling water or worry about a little steam from the sink or dishwasher.
I am scrupulous about cleaning our reusable water bottles, fanatical about handwashing, and strict about clean towels, dishcloths, sinks, etc. I feel like these go a long way towards staying healthy.
We also go through a lot of N95 masks - air travel, crowds, if anyone in the house is ill.
My sputum testing is "once every year or so" because I had both NTM and pseudomonas in the past, and have other health issues, use meds for asthma and rheumatoid arthritis that suppress my immune response, travel and garden a lot. Or right away if I get an exacerbation that requires steroids or antibiotics.
My CT scans are done every 2 years.
But I still believe overcleaning equipment is more stressful than truly useful, and the group(s) that support it so fervently don't have hard data to show NTM grows on equipment so quickly as to pose a real danger a real danger if it is not boiled or steamed after every use. And to be honest, a saucepan with distilled water, used on the range top, and monitored with a kitchen timer, is far less bother than sterilizer, steam bags, insta-pots and all the other things that would take over my small countertop. For me simplicity reduces stress.z
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2 Reactions@sueinmn, Amen!