Mayo Clinic Connect
Are there any issues swimming in a freshwater lake? It’s clear; doesn’t allow power boats so the water is quite clean. I wonder if it would be wise just to avoid getting my head in the water and risk taking in water?
Kathy – Both my pulmonologist and my ID doc keep stressing that MAC is EVERYWHERE. That there is no way to completely avoid it short of living in a sterile bubble. Just be sensible & don't inhale the water. I can't even tell you "just shower afterwards" – it could just as easily be in the tap water.
Another friend was told to stay out of her yard because MAC was there – I asked her what air she breathed in her house and car? Same ID doc told me I can even garden, just wear gloves and also an N95 mask if handling potting soil or mulch, or if it's dusty where I'm working. Remove clothes and shower afterward. I have been doing that for years anyway because I have dust and pollen allergies. Just means a little more laundry as I wash the garden clothes & gloves every time I wear them, instead of waiting until they are really filthy like I used to… Also, if wearing an N95 mask, remember it is only effective for 4-6 hours, depending on what you read, or until you get it wet.
Liked by Terri Martin, Volunteer Mentor, franthony, rits
@kathyhg Hi there. It is true, organisms are everywhere in our environment. Some places are more heavily laden with them than others. Since you already have the propensity to catch infections from these, you need to be extra careful. Lakes, do not have moving water to flush them out so they tend to have higher concentrations of organisms. In fact, there has been an uptick in deaths due to an organism in lakes that gets up your nose and penetrates the brain. One happened last month in N.C. I avoid swimming for the most part, but am particular about where I will swim. I NEVER put my head in or close to the water. I do not swim in busy public pools loaded with children. I only occassionally go in a super clean pool used by few people and do not splash or get my head wet. If you really must indulge in that lake, do so with caution, shave legs the night before (abraded skin is open to organisms including the flesh eating bacteria). Which is another thing, flesh eating bacteria is on the rise in ALL outdoor waters (two beach goers have died in the last month from it). Just stay cool responsibly.
MAC, Pseudomonas and other bacteria are everywhere and everyone inhales it just as everyone inhales other "things" in the air. If you smell it, you are inhaling it – some good smells like popcorn, chocolate (yum), perfume and some bad like smoke, diesel and garbage. Healthy lungs have great filters but those of us with lung diseases, such as bronchiectasis, get rid of most of the junk, but sometimes can't get rid of all of the bacteria. The bacteria can colonize in the mucus trapped in our blocked airways causing the disease.
As for swimming, I'm not sure how water containing any bacteria gets in the lungs because we don't breathe in the water. I think bacteria, like that flesh eating horror, gets in the body through a wound of some sort. I would check with my doctor before putting any part of my body in water that has not been treated. Even then, I read somewhere that chlorination does not kill MAC. I do go into the pool at my health club to take water aerobics but do not go in the pool if I have a wound.
Liked by Terri Martin, Volunteer Mentor
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@rits water is always evaporating and heading into the air , we can inhale it at this stage.
Thanks to everyone. I appreciate the information, as usual!
hi Kathyhg. I have a cottage and when I swim I don’t go under water, and just go in to cool off, maybe just treading water…
hi Sueinmn…I have never read this info before…would u mind showing the web site..I use my mask 1/2 hr at a time while gardening, bathing cutting grass etc…use until it starts to look a little dirty…tks
Rits. How is your treatment with the Aricayce going?? Just curious. I am still waiting for the insurance to free to a price.
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Rits. Agree not free… lol… must have been wishful thinking!!
Thank's for asking, Sounder. The training went great but I was short of breath and I had lots of gunk to cough up after each treatment.
I was doing it in the afternoon and by bedtime I was ok – until the fifth treatment which was on Saturday. I couldn't get my breathing to settle down and couldn"t stop coughing up gunk. Sunday, I realized I was having an exacerbation of my chronic bronchitis or bronchiectasis or both.
My breathing was so bad that I could barely make it to the kitchen and I stopped Arikayce as well as my airway clearance treatments. I sent a note to my doctor and she called me. She told me to hold off on the Arikayce and to concentrate on getting my breathing back to what is normal for me. Then, we would decide what to do. Maybe Arikayce 3
per week or maybe something else. Ten says later, I'm just about back to where
I was and I plan to send s note to the doctor tomorrow. I have an appointment for another ctscan and with her on 8/14. She may want me to wait to see her before
trying it again.
I am tremendously disappointed!
Rits. Sorry to hear you are having some setbacks. I got a call from the specialty pharmacist tonite and he explained all the irritation side effects to me, which sound like what you experienced. He also talked about what he called “pulse therapy”. That is a certain time on and an equal time off. Like 2 weeks on and then 2 weeks off. My doc had talked about this to me as well. I will be beginning my Arikayce treatment the 1st week of September, since my family is coming out from California to visit me ‘til the end of August. Let me know how it goes after you see your doc. I am currently coughing up blood tinged mucus. But I do not cough uncontrollably or frequently. Just maybe 4 or 5 episodes a day. Especially right after getting up in the morning. The pharmacist also suggested that I get a baseline kidney and hearing function test before beginning Arikayce treatments I’ll keep you posted as things progress. Good luck and my prayers are with you that you are able to find a way for treatment to work.
I'm glad the money came through and hope you have no issues with the treatment and it works for you. Enjoy your fun with family! Rita
Rits. Thanks , Rita. I’ll keep you posted. Try not to be discouraged. I have a good feeling for both of us!
Best to you,
Liked by rits
I started the Arikayce July 23. The training from the nurse and support from the pharmacy was great. I took it for 7 days. During that time I too coughed up the gunk after treatment and coughed more than I had before treatment. The third day i began with hoarseness and then completely lost my voice. My pulmonary dr wanted me to try to continue but after 7 days he decided I needed to stop. I have been off the Arikayce now for 4 days. Not coughing as much but still have no voice at all. As I understand it about half of the people in the trials had the voice problem so I was not surprised. Just hoping it is temporary. I do not think at this point thqt my Dr will put me back on it. He is trying to get me an appointment with a MAC specialist. I do feel that if I could have continued the treatment it would have helped. Just need to decide if I can live without talking….HA
Sandykayhud. Thanks for sharing your experience. Does your doc think that you can try again or has he taken you off for good?
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