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Cleaning + disinfecting nebulizer and aerobica

MAC & Bronchiectasis | Last Active: Aug 3 12:56pm | Replies (115)

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@sueinmn

@cate123456 @kathyhg @cavlover @303wendy
Good morning everyone. I am going to say something here that will have some on this forum unhappy, but bear with me. If you are already concerned about keeping your equipment clean and doing periodic sterilization, you are well ahead of half the population. Studies of CF and COPD patients show that half or fewer routinely clean and disinfect their nebulizer, CPAPs and other devices.

The biggest challenge in living with MAC and Bronchiectasis is learning to do the best we can to minimize risks while still having a life. When I was first diagnosed, and very ill, we stayed home & limited contact with everyone for fear of more issues. I felt like I was suffocating, not sure if life was worthwhile lived that way. For me "living with" means taking common sense precautions, but not letting fear take over my life.

Base of the pyramid: Exercise, eat well, rest, take my necessary meds, live my adapted life
Next level: Neb 7% saline, do airway clearance, avoid sick people, wear a mask
when prudent
Third level: Keep equipment clean daily, sterilize as recommended, avoid high risks
(hot tubs, close soil contact), take short showers
Top Level: Keep learning & adjusting

Not in my pyramid: I do not sterilize my water, though I do filter my drinking, cooking &
equipment cleaning water.
I'm not concerned about water or ice in restaurants, friends' homes, etc.
If I use my neb for 8 days without sterilizing because I am traveling, I
don't panic.

My adapted life includes traveling, carefully, but a lot. Going to outdoor functions, a lot. Going to select indoor gatherings, quite often masked. Gathering with friends and family when all are healthy. Caring for my grandkids. Pursuing my passions in volunteering, fiber arts and gardening (in mask & gloves.)

If you want to travel, please give yourself permission to create your own "pyramid" or philosophy for living with a chronic condition, not surrendering your life to it.
Sue

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Replies to "@cate123456 @kathyhg @cavlover @303wendy Good morning everyone. I am going to say something here that will..."

Thanks. Your experience and wisdom are always appreciated. There are so many differing opinions out there about what to eat, supplements to take, how to clean equipment, what equipment to use, etc etc and, I guess, at some point we just make our best decision and move on.

Sue,
I don’t see how this can get anyone upset. For me anyway, it is very helpful. I need to hear your words and not live in fear. I did a lot of traveling before Covid and I plan to continue as it is one of my favorite passions. And I’m glad I did a lot of hard adventure trips like trekking gorillas, climbing mountains, etc. when I did - and not because of now having Bronchiectisis, but because I’m getting older😂The bottom line is I need to do what works for me, listen to my body, do the best I can (and this can differ depending on the circumstances) and live life.

Now may I ask how you filter your drinking, cooking and equipment water? I like your ideas! Thank you! 😘