Your precautions: boiling water; keeping or tossing my potted plants?

Hi Jennifer @pjas972j Sorry to hear that you have MAC, however this is a lovely group with lots of help for you. Yes I boil water for 10 mins before drinking, I do not have any houseplants, but there may be a way to keep them by covering the soil but I am not an expert on plants, yes I gave up showers for baths and I wear a mask in the bath, wearing a mask for any kind of cleaning is a good idea. The big 3 are still a good option, for me they keep MAC at bay rather than getting rid of it but thats ok, Arikarice is the one that helped e the most . Im sure there will be lots of advice here for you. Take care Heather

I'll first address houseplants. My daughter & I both have them, in abundance! We also have bronchiectasis, asthma, environmental allergies, and I have had MAC and pseudomonas.
After researching, talking with friends with lung issues and U of MN plant experts, here is what we do:
- Use sterilized potting soil & wet it before handling. Wear gloves & mask when messing with soil. Better yet, have someone else do the reporrting if you can.
- Cover the soil with a healthy layer of aquarium gravel to minimize airborne particles.
- Water plants from the bottom, soak until water wicks to the top, then remove standing water from the saucers. I carry mine to the sink to soak, then drain & return to their homes. My daughter has a heavy "boot try" where she puts her plants to water. (The soak takes 20 min- 1 hour depending on plant size.) If the pot is too heavy to lift to dump water, remove it with a turkey baster.

Remember, plants help clean the air in your home, so if you can keep them safely, it is a good thing.
As I always tell people, your results may vary, but my plants are a source of joy and by taking precautions I feel safe keeping them.

As for medication, there is a time and place for it!
The current treatment guidelines, from 2020, I believe, can be found here: https://ntminfo.org/wp-content/uploads/2020/07/NTMguidelines2020.pdf
People who are asymptomatic, do not have cavities or other evidence of advancing infection in their lungs, or have problems tolerating the medications can try other strategies, even if positive for MAC.
I was treated during 2018-2019, but had increasing side effects. At the end of 2019, I switched to daily airway clearance with 7% saline nebs and other meds only as needed even though my cultures were still positive. (My lung CT was improved.) This has kept me healthy except for one short exacerbation for over 2 years.
Sue

Thank you for asking these questions, I was just wondering about indoor plants and these are really great tips! To shower or take a bath has also been a question for me too, I changed the shower head but I've also heard of a shower head with a filter--has anyone tried this? I've turned the water heater temp up but does water need to be boiled as well? Does a water filter clear the water enough to not need to boil? I'm still looking at water filters for under the sink, does anyone have recommendations?
Another question I have is being outdoors, because the NTM is everywhere, is it best to wear a mask when walking outdoors? what about on a nature trail, etc with streams, etc.
My doc has just started me on the Big 3 because I have developed cavities, so this was the deciding factor in my case. In addition to taking the meds I'm learning that a big part of staying well is being really consistent with the airway clearance, daily exercise and nebulizing. Take care

From my ID doc (also an NTM & tropical disease doc) (pre-Covid):
"NTM is everywhere. So are other pathogens, speeding cars, lightening bolts, vicious dogs and and crazy people. Your goal is to live a life where you minimize risks. The only way to eliminate them is to live in a sterile bubble - and that's not living!
When to mask:
If it is dusty and windy, mask.
If you are going to mess with soil, mask.
If you are going to be around sick people, mask.
If you are coming to the doctor's office or ER in flu season, mask.
Otherwise live your life knowing you are going to encounter NTM everywhere, even in your home air. You nose will filter most of it. Do your airway clearance. Eat a healthy diet and get adequate rest. Then go live your life."

Now, I'm sure he would add - indoors where there will be Covid risks, mask.

By the way, he also does not believe in boiling ones water UNLESS you have diagnosed GERD as well as NTM. But he does recommend staying away from hot tubs & taking short showers.

I have followed this for over 3 years, have been off meds & doing airway clearance for over 2 years, had only one exacerbation, and my CT is as good as the day I stopped meds.

Your results may vary, but this is how I choose to manage.

Sue

Thanks Sue, this is great guidance. My doc last week said the exact words "live your life" ...so I guess I'll stop worrying about the NTMs of the world 🙂 thanks again for your insight it's really helpful

Hi Jennifer @pjas972j This is all good information. My MAC has been dormant for about 5 years now but I still follow certain protocols to avoid triggering it. I take tub baths instead of showers, wear a mask when working in the garden or with potted plants, stay as far away from misting systems as possible, which is close to impossible in Arizona in the summer time. I've had to decline invitations to go out to eat in the summer with a group of friends who dine on the restaurant patio because of misting systems.

I drink strictly bottled water and when out at a restaurant I ask for sparkling water or club soda without ice. My understanding is that the filtering systems for water are inadequate. There is a good deal of discussion on this forum about filters so you might search for those to get more information.

The air in Arizona is generally not great but I live my life as best I can taking precautions when needed, but I'm not going to live in fear. I choose to live in hope that I will stay MAC free. Linda @lindam272

Hi Sue, I don’t have pseudomonas or MAC, but I wonder if some of the precautions you and others have written about is something that all patients with Bronchiectasis should consider? Masking when gardening, bathing instead of showering etc These would be some extra precautions besides exercise and airway clearance??

Well, here is my non-medical opinion. Bronchiectasis is permanent and usually progressive. Any reasonaable precaution to protect my lungs is a good thing. So far it is working for me.

How about it, fellow "Bronchs" what do you do?
Sue

Thanks @sueimnm . I know it is usually progressive so there is a big chance I will develop some other issues with my lungs. I would be interested in hearing from others too about whether they use these strategies to try to avoid other infections. We mask in indoor public spaces because I know it makes a difference.

We do want to travel again. I’d be interested in hearing from people who do some travelling beyond North America, or find a conversation on here about safety precautions people have used. We’ll only use bottled water, avoid certain regions but I think there will always be risk.

It is a big concern, but I was told you still have to live your life.
Thanks.

Welcome to our very confusing world of living well with bronchiectasis. Let me begin by saying nearly everyone starts out scared and trying to take every possible precaution.

Pretty soon, it occurs to us that hiding in the house and spending life worrying about what to boil, what is safe, where there might be germs, missing events...isn't really living.

Little by little, you realize that you have lived, more or less safely, for quite a long time before you ever heard of this d@#$%d disease. And you begin to realize that a shower, an ice cube in a restaurant, or a walk with friends probably isn't going to be the end of the world.

You might want to read this discussion to learn how different people manage:
https://connect.mayoclinic.org/discussion/macntm-is-different-for-everyone-treatment-might-be-different-too/
If you want to read beyond Mayo Connect, here are some resources to check out:
https://connect.mayoclinic.org/discussion/resources-for-the-abcs-on-bronchiectasis-and-mac-ntm/
Finally, if you wonder about travel, except for the all-stop during Covid, my husband and I have continued to travel in the US, Canada and Mexico - in our camper, in hotels and in friend's homes. We did cancel our 2021 trip to Europe and are looking to reschedule it. Here is a recent discussion by people who are even more adventurous.
https://connect.mayoclinic.org/discussion/need-advice-for-traveling-internationally/
Feel free to read and search, here and elsewhere, then head out and enjoy life.
Ask as many questions of all of us as you would like! Most of us are happy to swap stories.
Sue