What safe hobbies can I do while having NTM/MAC?
I would like to find hobbies that are safe for me to do, since I have been diagnosed with non-tuberculin, mycobacteria avium complex. My biggest hobby prior to diagnosis was plants and avid gardening. I was told I should not be gardening, weeding, potting or re-potting plants. I also love to cook, but I was told I should wear a mask while cooking, due to the steam. This has been extremely hard and I have been very depressed and do not have a very good outlook for my future anymore.
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@letsjustbreathe why are you not able to travel?
@sueinmn and @cheb
International traveling now is just not worth the anxiety, careful planning (on top of planning the itinerary), etc. I can't eat the food, which leaves me mostly hungry, and then I lose weight, and that's a slippery slope. I lost 10 lbs on my last trip. Then I have to do airway clearance, which has to be timed with meals to prevent reflux, and that's a drag on my vacation time. I don't sleep well (gotta sleep inclined), which makes everything worse-- I tried taking a sleepy med last trip and it just dried my lungs out, so AC was that much worse. Then I have to carry all the equipment, my own food from home, etc. and that was BEFORE I started using the vest. No way am I dragging that thing around international travel-- catching last minute trains, etc. Then there's the problem of really bad pollution, which I just can't be exposed to anymore.
I did a test run this past summer to see if I could do it all. I really thought it all out, bought everything I needed, and picked an extremely easy country to travel in (Italy.) It was hard though. Oh, you have to understand also that my idea of vacation is so packed with fun that I need a vacation to just rest when I get home, and my favorite travel buddy is 28 years old, and I don't like disappointing her by saying I have to stop now to do AC, or none of these restaurants serve anything I can eat. Even with all of my well-thought-out accommodations for my lungs, the night I got home from Italy, I stayed up the entire night coughing up sputum. And my next CT scan was alarming.
So bottom line, my favorite hobby is not good for my health.
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2 Reactions@sueinmn Thanks for that link. No, I wouldn't get access to a pulmonologist unless I go private which I'm not sure I can afford to do, but I may need to look into that. Thanks again and I'll check out that link.
@cheb So...here's the problem with AI - based on what?
Potential lung irritation from dust? - I get that, but you can mitigate it with wet sanding, wearing a mask and damp cleaning afterwards.
VOC's - yes - they irritate all lungs. Again, a mask and ventilation.
All of which does not mean "Don't." It means exercise reasonable care and caution.
I'm pretty sure AI led you astray here...if you asked a follow-up "Please provide me with research studies to support this recommendation," you would not get an answer .
PS. We just finished a major paint and redo project jointly with young pros. None of us dry-sanded either drywall mud or spackle - so doing all ceilings and 6 rooms, including one new closet, generated little dust. This was not a special request - they do this all the time to protect their own lungs.
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1 Reaction@letsjustbreathe is the eating issue due to NTM/MAC?
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1 ReactionAnytime I deal with soil, repotting etc. I use an N95.
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2 Reactions@letsjustbreathe That is where I'm at. It's just not enjoyable. The last big trip, 2 years ago, I couldn't do the airway clearance except during bus stops, so I would miss out on the presentation or whatever the stop was for. I didn't get my daily brisk walk in because the tour schedule was tight, but not physically demanding. European hotels did not have fitness centers. Tried doing airway clearance at night before bed, but I was so dried out and tired, it didn't work well. Got treated for pneumonia when I came home. Now my travel is limited to visiting my daughters in CA - and that's always contingent on how I'm doing, so I always buy travel insurance.
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2 Reactions@cheb I usually can't eat the international food because of LPR (reflux), which might be the underlying cause of BE/MAC.
@cheb. I was looking for a hobby I could do (I just finished 2 years treatment for MAC last June) & found I am loving making pro size 10 inch old fashioned potholders with 100% cotton loops. I started out making a pair for my close friends. I used you-tube videos to re-learn what I knew as a child. The 10 inch size are much larger & fun to make for gifts. The only problem is the smell from the dyed colored loops on one brand I bought on Amazon. It was terrible. I returned them. Now I *only use* the loop brand "Friendly Loom" on Amazon, made in USA. When loops arrive, I take them out of bag & place them in another room for several days just in case, but there is No smell. I asked my family to send me pics of their kitchens so I could match up coordinating colors & now I have made Christmas gift potholders for all my family to give as gifts. There are also little heart loops you can buy or silicone loops to use as potholder hangers. I add a matching kitchen towel too when I gift them. They can also be used as trivets/hot pads. I saw a Facebook site called acorns and twigs that looked cool, then I started really getting into different patterns online & a girlfriend of mine got me a pattern book. I hope you find hobbies you can do. You can wear a mask while making them. I also have a room HEPA filter running all the time. I can make one per evening when watching t.v. , but also work on them when I am stressed. It takes my mind off my lungs. I even taught my granddaughters & they both have 7inch looms now. Also check out Etsy & search online for free patterns. Good luck. Have fun!
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4 Reactions@pfarren Have you tried saline flushes of your sinuses? My sinus issues were thought to be an issue with my bronchiectasis. I don’t know if it’s available there, but Neil med has premixed packets for saline and I like their silicone Squeezie bottle since it can be boiled. I use these to keep everything as clean as possible.
My brother uses a Nettie pot and mixes his own solution. There are instructions on line to do this.
I also use nasal sprays. Ipratropium is the quickest acting I think, but I also have steroids and an antihistamine mixed in. . You could ask your PMD for help with sinuses until you get in to specialty care.