I was told to move out of State or expect to be on Oxygen

I live in FL and I'm on Oxygen. I was treated for MAC for 21 mos. My ID doctor said I could get it again so I'm careful. I stay inside more, especially on windy days and I don't drink faucet water, or do any kind of yard work.

Hi Hillary,
If you have been advised to just move for quality of life in your environment. That is s no brainer: Better than taking toxic BE drugs for years only only to maybe have it get worse / seriously your doctor may be right. I have had to exit many travel experiences early to return home & miss the fun. Little triggers can really set you off! For me it has increasingly become wind ( especially cool), airconditioning for sure & just being tired. Good luck deciding❤️

@sueinmn An unusually blunt comment for an ID doctor to make to someone. I do now recall that there are hot spots for NTM around the world, and really it’s everywhere. We do our best to avoid it or manage it.

@joyeous Glad you mentioned sprinkler system which possibly could carry MAC, especially in the summer months, warm weather. I have a sprinkler system and had not thought of it something to be aware of for droplets and then it is the misters......which as we know are placed in the produce departments. Overall when I do grocery shopping I am with an N95 hugging my face. Now I will be more aware of what to do when I am running the sprinkler system.

Yes, my Mother had emphysema but not BE....my brother had both.
I just have BE but an xRay in 2015, due to prep for hip replacement surgery, had the radiologist telling me I had emphysema but the pulmonologists, two of them locally, in 2015 and the 2021 xRay, told me I just had large lungs. You would have thought they would have said..."I want to do a C Scan to err on the side of caution'.
My PCP, after seeing him several times in a year saying something is wrong my weight loss had him order a CScan Oct. 2022....result as he held my hand....BE.
Barbara

@nana75 Not that it is total protection but I have to ask....During your travel trips and with others.... did you..... were you able to...did you want to wear an N95Mask???
There are others who have traveled but did fine and then there others that do have problems when they travel.....but we don't know all the circumstances and what they do for themselves when they travel.
So, just wondering how you managed it all and what you did or did not do for yourself during those travels. As we know it isn't easy or fun to have to keep up with everything.
Barbara

@blm1007blm1007
Hi Barbara.
I have only worn the N95 mask during Covid where I felt it was needed like hospital settings & airplanes. The air quality has only kicked up my BE when visiting family in Florida when they had some thing in the air near the ocean like a fungus? My flares traveling are from limos that are so cold you feel like you are sitting in a refrigerator, air conditioners directly over my bed blowing cold wind down or sometimes in boats with the wind blowing. Had to exit a cruise in NYC because I couldn’t breathe. So it is when my body gets chilled. But maybe the air we breathe does cause a shut down reaction like room deodorants, dry laundry soaps, dryer sheets for wrinkles are all irritants but we can avoid them. Are there air quality index reports for your area? I had a customer once at my resort that continued to stay with us in their RV although they had a home not too far away. This went on for maybe 2 + years . Last I heard, they sold their house, moved into a new home in our same area & she was finally cured. Wishing you find a solution & feel better😉Judy

@nana75
Barbara, I didn’t answer your mask question in full detail- Yes I wear a mask & air filter around my neck on all airplanes( must hide the filter from attendants or they say it. is not allowed)! 🙄 Judy

@ccanz Thank you for all your information. It is very helpful . I do live in the Charleston area and have now been referred to MUSC , happy about that . I’m about to purchase a lifestraw pitcher and bottle . Thank you again and good luck with your journey Hilary

@nana75 While MAC is everywhere it is worse in certain states, as you know, like Florida. Being inland might not be as bad but Florida is Florida. Oh that humidity. That's why the tropical plants love Florida so!
Cold is certainly not a friend to our lungs and very stressful in general if we get cold. Yes I am very much conscious of trying to avoid having a supply heating/cooling duct close to me, anywhere.
Yes, some houses are 'sick buildings' and need a 'house doctor' to figure it out.
I have heard about using a personal air filter on a plane....but did not know they are not allowed!
Reality, we have so many things to know about, and as well, to know how to organize our lives such that we are proactive, aware and doing all to help us protect ourselves with our BE.
I have not done much traveling in the last two years other than to Denver and Tyler for my medical care with BE. So glad I was fortunate to have traveled far, wide and close by before the BE raised its ugly self. I am trying to build up the confidence to do some stateside travel as others have done. Knowing the experiences, good or bad, of those on this site has helped in so many ways.
Happy February 14.!
Barbara

@hilarys26 @nana75 @@blm1007blm1007 and all who have commented here - let's try to put this in perspective, please.
NTM/ MAC are exceedingly RARE infections. Even the most current statistics put the numbers at perhaps 100,000 to 150,000 infections in the US where our population exceeds 348,000,000. That translates to roughly 4 in 10,000 people. I know it seems a lot more common, but that is because we gather here on Connect and a few other reliable forums.

NTM/MAC is everywhere - in the soil, water, air... That means that no matter where you go, you will be exposed. Yes, soil and water features in some areas mean more people may become infected. But we're not talking about certainty, just SLIGHTLY higher risk.

So HOW exactly are we to manage? Sensible precautions! Filter or boil drinking water. Turn up the water heater to 130F+ to kill NTM. Take short showers. Avoid swamps, fens, wetlands and bogs where NTM proliferate, as well as indoor pools and hottubs. Mask in flying dust conditions in high risk areas like the garden.

I know this is overwhelming at first, but BE should not take over your life. Once you get a reasonable routine and a good care team, stop googling and "doom-scrolling" and go out and live. I probably don't say this often enough, but if you can't get past that overwhelmed feeling, it is time to seek some counseling on how to live with a chronic condition. I did it back in 2021 when dealing with 3 chronic conditions, and it helped immensely.

Dr Jennifer Honda's webinar is golden.
https://www.youtube.com/watch
My ID doc sat me down 7+ years ago and told me, "Bronchiectasis is a disease that you will live with, but you will not die from. Infections crop up from time to time, and we deal with them. Take reasonable precautions and ogo live your life."

Hugs and peace to each of you. I hope you can each reach a place of peace and acceptance.