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regen99 (@regen99)

Steam cleaning carpets?

MAC & Bronchiectasis | Last Active: Oct 23, 2023 | Replies (10)

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@regen99

oohhhhKAY. Think I've got it.

Here is another one; have you explored phage
therapy or the Jewish Clinic's work with MAC?
do you walk out doors without a mask when it is not windy? what kind of mask do you use? because I am 85 and have both copd, bronchiectasis, and strongly suspected MAC, I
keep myself in a bubble: we are moving to a small rural community where we have owned a sweet historic and carefully updated home for years. I can't wait to get out of the city. I miss
gardening so much, it has been hard, but I do a
minimal amount and that helps.

There is no one here, including my doctors and nurses, who are really interested (or knowledgeable?? ) or have the time for details; when your time is short you want to make the very best of it and know what you are doing to your odds by taking some well-educated chances. For instance: my body craves swimming. I know I can't. This move is incredibly difficult for us physically as we both have substantial physical issues and can't get any help.
Stay with me, Sue! Thank you.

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Replies to "oohhhhKAY. Think I've got it. Here is another one; have you explored phage therapy or the..."

Hmm, no wonder you are having a hard time - preparing to move and trying to "keep myself in a bubble..."

The very best advice I ever got came within a few weeks from two people I trusted very much - my primary provider of 20 years, and my infectious disease doc.

Both of them told me "Bronchiectasis is a disease you live with, not die from. Take care of your health, take reasonable precautions, but go out and live your life." I have done this for the last 4 years.

I do my airway clearance, eat healthy, stay away from sick people, exercise and try to get enough sleep. I also keep my asthma controlled, keep my immunizations up to date, and keep my chronic pain (and thus a lot of my stress) under control.

I don't wear a mask outdoors unless the air quality from the fires is really bad, or if I am working directly in the dirt in my gardens - then it's an N95 with a breather valve. Nope, I didn't give them gardening, but I leave the digging and mulching to a young assistant.

I swim - in an outdoor pool, lakes or the ocean. My ID doc approves - he says the wide open air dilutes any germs. I do miss the hot tub! And going to the indoor pool at the Y.

I see friends and family regularly - we are all careful to keep to ourselves if ill. During cold & flu season, we get more selective about who we gather with - or try to gather outdoors. It helps that we spend our winters in the South so, the patio is the most common place to gather. We also dine out occasionally, we go to a lot of outdoor events and activities, and a few large indoor events. But we are likely to choose places with lots of space so the air is well-circulated.

I have chosen to prioritize a full life that maybe is more risky than some would choose over perhaps living a little longer but being isolated. My 96 yo godmother/aunt is my example here - when we get out to Washington, we have to make appointments to see her to fit into her schedule.

Feel free to visit with others in our group - thay maybe can offer suggestions about how they manage to stay healthy.
Sue