How to stay safe from MAC infections after bronchiectasis

Posted by @ling @wangling, Nov 14, 2022

Hi all,
I was just diagnosed with bronchiectasis. I have been reading your posts, it seems to me that some people have bronchiectasis for years without getting MAC infections. I am wondering how. It seems MAC bacteria is living with us in our daily life. I would appreciate it so much if you could share your successful experience about it. Many thanks in advance!

Ling

Interested in more discussions like this? Go to the MAC & Bronchiectasis Support Group.

@wangling

What a resourceful group with wonderful people.
This is great.
Many thanks, sweethighland!

Ling

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Hello Ling, Please don't let this condition we share discourage you from living a full life.
Over the nearly years since my diagnosis, life has changed, but we still travel, eat out, go to concerts and plays...just more carefully.

The occasional short shower in a hotel/motel is not a problem - I request an accessible room, which usually has a hand-held shower wand so I can keep the water away from my face.
I continue to swim - in an outdoor pool or the Gulf/ocean.
We choose airy restaurants with the tables well spaced and eat outside of peak hours.
I often choose to wear a mask indoors, and I notice this autumn that many others are as well - even in our church, at the market, at a school performance recently.

I am super cautious about staying away from people who may be ill (my extended family has many with health issues, so this has long been our practice to keep each other safe.) We are still deciding about whether we will join our community Thanksgiving dinner, or whether that is too many people for our comfort.

Just remember that you need to figure out your personal risk tolerance. My philosophy is to do everything I can to keep my lungs clear, control my asthma, limit excessive exposure to MAC in soil/dust (eg masking & washing off, having others handle digging and mulching) and in concentrated water vapor (eg hot tubs). I refuse to worry about "incidental exposure" - occasional showers, drinking water. I was sick for 3 years before diagnosis, then treated for Pseudomonas and MAC for almost 2 years; now I have been exacerbation-free for 35 months without antibiotics doing these things.

I think we are all frightened and super-cautious when first diagnosed, then we find a routine that works and settle into it.
Sue

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@sweethighland

Irine, for how many minutes do you nebulize? I'm glad you are MAC free without antibiotics.

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The saline takes about 20 to 25 minutes to finish nebulizing.

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@sueinmn

Hello Ling, Please don't let this condition we share discourage you from living a full life.
Over the nearly years since my diagnosis, life has changed, but we still travel, eat out, go to concerts and plays...just more carefully.

The occasional short shower in a hotel/motel is not a problem - I request an accessible room, which usually has a hand-held shower wand so I can keep the water away from my face.
I continue to swim - in an outdoor pool or the Gulf/ocean.
We choose airy restaurants with the tables well spaced and eat outside of peak hours.
I often choose to wear a mask indoors, and I notice this autumn that many others are as well - even in our church, at the market, at a school performance recently.

I am super cautious about staying away from people who may be ill (my extended family has many with health issues, so this has long been our practice to keep each other safe.) We are still deciding about whether we will join our community Thanksgiving dinner, or whether that is too many people for our comfort.

Just remember that you need to figure out your personal risk tolerance. My philosophy is to do everything I can to keep my lungs clear, control my asthma, limit excessive exposure to MAC in soil/dust (eg masking & washing off, having others handle digging and mulching) and in concentrated water vapor (eg hot tubs). I refuse to worry about "incidental exposure" - occasional showers, drinking water. I was sick for 3 years before diagnosis, then treated for Pseudomonas and MAC for almost 2 years; now I have been exacerbation-free for 35 months without antibiotics doing these things.

I think we are all frightened and super-cautious when first diagnosed, then we find a routine that works and settle into it.
Sue

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Hi Sue,
You are truly inspirational. Yes, we have to live, and life is short (not a cliche). It seems to me that we may not be able to eliminate Mycobacterium bacteria in our daily life no matter what we do. Maybe the best thing we could do is to keep the airway as clean as possible. I am wondering if this bacteria is cleared by itself for a normal and healthy person. Does that mean if we keep our airway clean, the bacteria will behave the same to us? That is a question I would love to find out. To ask for an accessible room with a hand-held shower head is a great idea. I am thinking of changing one of our showers to hand-held. I believe dining outdoors is no problem, concerts and plays are also ok, because we can wear masks. You mentioned that pandemic normalizes mask wearing. That is true and it is to our advantage. I used to get away from people who wear masks. Now I appreciate people wearing masks. I have two grandkids, one is 9 and one is 6. I am very open to them, if they are sick, I just can't afford to be around. I still need some time to sink all in, be careful and not paranoid.
Many thanks for your experience sharing!

Ling

REPLY
@wangling

Hi Sue,
You are truly inspirational. Yes, we have to live, and life is short (not a cliche). It seems to me that we may not be able to eliminate Mycobacterium bacteria in our daily life no matter what we do. Maybe the best thing we could do is to keep the airway as clean as possible. I am wondering if this bacteria is cleared by itself for a normal and healthy person. Does that mean if we keep our airway clean, the bacteria will behave the same to us? That is a question I would love to find out. To ask for an accessible room with a hand-held shower head is a great idea. I am thinking of changing one of our showers to hand-held. I believe dining outdoors is no problem, concerts and plays are also ok, because we can wear masks. You mentioned that pandemic normalizes mask wearing. That is true and it is to our advantage. I used to get away from people who wear masks. Now I appreciate people wearing masks. I have two grandkids, one is 9 and one is 6. I am very open to them, if they are sick, I just can't afford to be around. I still need some time to sink all in, be careful and not paranoid.
Many thanks for your experience sharing!

Ling

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Yes, this is a constantly evolving learning process. As for the MAC, yes, normal lungs clear mucus well, but ours do not. So the purpose of 7% saline & airway clearance are twofold. The saline helps thin the mucus, allowing us to cough it out, and provides an inhospitable environment for the bacteria in the mucus that is left behind. A while back, I had an "Aha!" moment, when I left my nebulizer behind on a 3 day trip - but when I coughed hard on the 3rd day, the mucus that came out actually tasted salty in my mouth - so the residual saline that was hiding in my lungs doing its job.

We have 3 & 6 year old grandkids and their Mom is a nurse, so is super diligent about keeping us safe. We have had times when we helped out - fully masked, as were they, and have managed to stay healthy in spite of their childhood viruses.

We are also fortunate to winter in the far south, so even manage to entertain outdoors most of the time (but not this week - 50F & North winds are not patio weather).

Stay healthy!
Sue

REPLY
@sueinmn

Yes, this is a constantly evolving learning process. As for the MAC, yes, normal lungs clear mucus well, but ours do not. So the purpose of 7% saline & airway clearance are twofold. The saline helps thin the mucus, allowing us to cough it out, and provides an inhospitable environment for the bacteria in the mucus that is left behind. A while back, I had an "Aha!" moment, when I left my nebulizer behind on a 3 day trip - but when I coughed hard on the 3rd day, the mucus that came out actually tasted salty in my mouth - so the residual saline that was hiding in my lungs doing its job.

We have 3 & 6 year old grandkids and their Mom is a nurse, so is super diligent about keeping us safe. We have had times when we helped out - fully masked, as were they, and have managed to stay healthy in spite of their childhood viruses.

We are also fortunate to winter in the far south, so even manage to entertain outdoors most of the time (but not this week - 50F & North winds are not patio weather).

Stay healthy!
Sue

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Sue,
It appears what you are doing is working. And you are living a full life, traveling, even swimming in the pool. I hope MAC bacteria will get out of your system by itself eventually. You have a very positive attitude. I believe that makes difference.
My pulmonologist asks me to keep using Albuterol instead of saline for now. I hope he is right about this. 
Yes,  you are lucky living in the south, you can dine out all year round. I live in Oregon. It is raining and cold now. Thanksgiving is coming,  are you going to have a family gathering? We are planning to, I ordered a  huge bird already.I am always happy to read your post. 
Take care  and many thanks!

Ling

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