Lung Matters Protocol
Hi, the info shared here has been so helpful as I'm now diagnosed with MAC after quite a few years of asymptomatic bronchiectasis. I see some back and forth about Lung Matters Protocol, could someone post the actual site (url)? Googling turns up several confusing results.
Thank you.
Interested in more discussions like this? Go to the MAC & Bronchiectasis Support Group.
Thank you, Sue. I will contact the trainer to ask about the 10 minutes for the Arikayce nebulizing head. I never thought about placing the Pai and Aerobika into a closed container and then shaking to agitate. So simple and definitely reduces the amount of water needed.
I am part-time in a camper with limited water & storage, so always looking for ways to minimize water use.
I’m in the wash in water that’s just boiled, rinse in boiling water, and then sterilize camp. (I had my water heater increased to 140 so it shouldn’t be a source.) I am even less diligent than most and use the sterilizer bags 2x/day most days, but wash with Dawn and boil the equipment 10” 2x/week. I don’t have MAC. I keep changing my cleaning and am likely to change again.
I don’t recommend this for others, but for my current situation with no infection, it seems a reasonable trade off considering risk and time.
I use SeJoy sterilizer and dryier. I tried literally three before I decided on this one. It is the right for me because the upper part separates from the bottom tall part. That way I can use only the upper part for my nebulizing pieces plus a nebulizer mask. It is also not expensive, it was $53 on sale through Walmart. Most of the baby bottle sterilizers/dryiers have more functions which I do not need. This one is simple. Honestly I really like it.
It's great to find a sterilizer that can be used without the large middle tank. Grownsy also makes one that is fairly compact and can be used without the tank. I take it on trips, road and by air. It sterilizes for 8 minutes and uses 90mL of water. Makes traveling and sterilizing easier than boiling water. I soak my gear in Dawn and hot tap water before popping in sterilizer.
The Bololo I use at home for everyday use as it sterilizes around 13 minutes and uses 150mL. The Bololo is not configured to use without large tank.
@sueinmn Just to clarify, do you use the baby bottle sterilizer daily, or once a week? I am using an aerobika and Pari nebulizer with saline. I rinse in soapy hot water after each use, but boil for 10 minutes weekly. I have a Wabi steam sanitizer and dryer, but have never used it…
I followed the link and it looks like it was not tested for MAC. Is that correct?
Six different types of non-tuberculosis mycobacteria (MAC is in that category) were tested.
I am like you, wash thoroughly after use, boil weekly. I have never used a sterilizer because I have no space for it.
@sueinmn Thanks- I guess then if I decide to use the sterilizer it would just replace the weekly boiling- it may be harmful to devices to expose to that high heat daily.