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Profile picture for Sue, Volunteer Mentor @sueinmn

@snoei Great question and a hated answer - It depends! I am a person who lives life with asthma, bronchiectasis, rheumatoid arthritism and a few other "disorders", but I am not defined by them, nor obsessed with every aspect of my health.

You sound like me - a person who tolerates some risk in order to live their life - I call myself a "belt or suspenders" type. Then there are those who are more cautious - let's call them "belt and suspenders" types. Finally, there are those who try to totally avoid risk - I'm not sure what to call them - maybe "belt, suspenders and superglue" types?

Common sense tells us that with bronchiectasis we have "an increased risk of lung infection" - but not in a critical way like someone who has had their immune system killed by chemo. And not every encounter with a germ leads to an infection, otherwise we would need to live in a bubble. So each of us needs to find our own risk tolerance.

Like you, I tend to "live my life in the world" with the fewest restrictions possible, but having survived MAC antibiotic treatment, I know I don't ever want to go there again! As a precaution against reinfection, I do daily airway clearance sometimes with saline.

With respect to drinking water and ice - If you have gastroesophageal reflux (GERD) - either diagnosed or "silent", ice and drinking water precautions can help avoid infection because you reduce the risk of aspirating water with NTM in it.

Showers, on the other hand, seem to pose a greater risk if your water is contaminated with NTM. By repeatedly inhaling aerosolized particles, you have a greater risk of infection. To minimize the amount of NTM in your hot water, according to Dr Joe Falkinham, increase the temperature on your hot water heater to be above 130F. Other recommendations would include cleaning the shower head, ventilating the bathroom, and short showers.

Another of the bigger risks for inhaling too much NTM & getting infected is indoor pools & all hot tubs, where the air above becomes filled with concentrated, aerosolized NTM. Outdoor pools and lakes are not so risky, as any bacteria is highly diluted by fresh air.

How do I live? I hang out with my dear grandsons, who could be described as germ factories. We wash hands, cover coughs, and go on adventures. I swim outdoors in the pool, lakes and ocean. I entertain, eat out and drink the water/have ice in my drinks. I travel - a lot - and wear a mask on planes with their close quarters and recycled air. I garden - in wetted soil or with a mask, leaving the dusty tasks to someone else. I constantly gather with others, indoors and out, but usually avoid crowds in cold and flu season or mask, and stay away from sick people.

Some of the places I think people tend to go overboard on precautions - worrying about NTM on produce, steam from the dishpan or dishwasher, getting a shampoo and haircut, never going out unmasked, even worrying about passing neighbors in their apartment building hallway.

If my level of caution happens to shorten my life a bit, I will go out with great memories, a song in my heart and a smile on my face.

What precautions or changes have you made since diagnosis?

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Replies to "@snoei Great question and a hated answer - It depends! I am a person who lives..."

@sueinmn I appreciate your common sense approach. I was first diagnosed with BE and MAC last October.I have learned knowledge is power. Many people have had this for decades.There are so many precautions to take while at home, and it’s not all inhibiting as you work to figure it out as you travel, go out,etc.Life altering?….definitely. But at age 74 I agree with you. Let this final chapter play out, and embrace all the joy you can and still be cautious too.Jeanne

@sueinmn thank you Sue. I also garden, bicycle and walk outdoors in seasons that allow these activities. I'm eagerly looking forward to spring and definitely do better when more active. Blessings!