Does anyone think it's ok to swim in outdoor pool with MAC?
We're hoping to go on a trip with the grandkids. The place has an outdoor pool, should I even been near it because of the vapers? I'd love to play with them in the pool.
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Here is my (not a medical expert) opinion. As with all else related to MAC and Bronchiectasis – this is a highly individual decision, related to a person's overall physical health and risk tolerance.
My ID doc told me years ago "Bronchiectasis, for most people, is something you live with, not die from. You need to find what works for you." My primary told me "Living in a state of fear is not truly living. Take sensible precautions and hug your kids and grandkids." (This during the height of Covid.)
Most experts agree that use of indoor pools, hot tubs and steam saunas carries a relatively high level of risk due to the concentration of potentially MAC-contaminated vapors in the immediate vicinity. What is less clear is the risk posed by outdoor pools or lakes – the vapors tend to be highly diluted by outdoor air, especially in breezy or windy conditions. Pools maintained, in full or in part, with salt water tend to pose less risk because saline content suppresses growth of NTM. Likewise, ocean or gulf swimming (saline content at or above3%) is considered safe.
Now comes the "judgement" part – do you tolerate a risk of some exposure in exchange for enjoying life with your grandchildren? Do you do routine airway clearance and use saline nebs to minimize your infection/reinfection risk? Is your overall health, but for the lung condition pretty good?
With the blessing of all my docs, I have figured out that my philosophy and risk profile can be summarized as follows:
"I intend to live my life to the fullest while taking prudent precautions. I know I must live with Bronchiectasis and the possibility of lung infection, but I refuse to live in fear of infection or live 'in a bubble'. Based on this philosophy, I try to balance the risks I choose to take with the healthiest possible lifestyle – diet, exercise, airway clearance, medication compliance, asthma management and a positive attitude. "
What do you believe is a reasonable philosophy for you?
Following this philosophy, I swim in well-maintained outdoor pools, lakes and the ocean, but not indoor pools or hot tubs. I shower, drink filtered or Spring water, and don't worry about whether the ice in my cocktail at the restaurant is safe. I garden, work and play outdoors, but stay away from known sources of NTM like peat moss. But I wear a mask in dusty conditions (helps my asthma too.) I have stayed healthy and MAC/Pseudomonas free for almost 3 1/2 years so far.
I agree with everything Sue said. Quality of life is very important. My dr told me as long as the pool is well maintained it is okay. I would ask the manager at the place you will be staying at about their pool maintenance routine. That is what I did when using the pool in my neighborhood. The manager was very receptive and provided all the info. It helped ease my mind. Something to consider that may help you decide. Enjoy your trip!
Well said Sue, thank you! I do wonder what system/filter you use for you water at home
Sue, your comments are so helpful!
There seems to be a lot of negative comments about drinking spring water. I drink spring water instead of tap water. What do you suggest?
Along this vein, does anyone have info about the safety of geothermal pools like the Blue Lagoon in Iceland? We will be visiting there soon, and I can't find much info about them and NTM/MAC risk. I already have MAC, but trying to minimize my exposure; not started any antibiotics yet. My Pulmonologist thought it would be ok, but be very careful in steamy locker rooms.
If you have well water? That's probably better. Dr. Faulkinham says if you have to buy water, spring water has less MAC than other bottled water. I carry Lifestraw wherever I go and that will kill MAC in the water and boil water at home. I just prefer the taste of boiled water better and that's why I do so. I will have an occasionally sparking water or something, but not daily. I know Sue the Admin, isn't concerned about the water she drinks. You have to figure out what you think is best for you to keep your exposure down.
Thank you so much Sue for sharing your practice and experience with us, you have helped so many, especially the people like me, the beginners on this life long journey with the conditions. Your experience is so valuable because, I believe, it is evidence- based. I agree with you totally, live a life as you want despite the conditions. As to where to draw the line is so personal, I believe doing whatever brings us joy, but with precautions, period. I also shower, because it gives me joy, I garden wearing a mask, I even have house plants, but do apply the tips I got from you, putting pebbles in the pot. At least we are doing something, whether it is working or not. Who knows. We don't have to be a scientist to know that germs and bacterias are everywhere. As long as we are breathing there are risks. But I have to say that overcoming fear is not easy. I feel so grateful to many people in this group.
I wanted to see where you obtained your information about water. I was always under the assumption that purified drinking water was better than Spring water for people with MAC. I was also curious about the mention of the Life Straw. My hubby bought me one and I reached out to the company to specifically ask about mycobacterium and they told me that they couldn’t confirm that it would “filter” it out.
Hi Dee, you would think purified water would be better, but most purified water is usually from municipal sources, or basically tap water. NTM is in municipal water supplies, pipes, etc. Unless the purification process includes filtering with a .2 micron filter, it does not filter out NTM.
I bought a Lifestraw pitcher. Somewhere on the website it lists their products and says what it filters out and/or the the filter used. I’m pretty sure I remember the pitcher says it uses.2 micron filtration. You do need to read and choose your product carefully. From my interpretation, the pitcher is good to use with tap water but it doesn’t have all the filtration necessary to make water from a stream safe to drink if you were out camping.
Dr Falkinham and his team have studied LifeStraw and other methods for drinking water free of Mac. Sorry I don’t have a link but you can find info online. SteriPen (uv wand) also proven to work.
I think in another recent mayo clinic connect thread, another member posted a link to some of Dr Falkinham’s findings.
Sorry to say I swim in oceans only; as my Respirologist has suggested, I avoid pools. Maybe a beach holiday with the grandkids?