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Things that made managing these diseases easier
When I was diagnosed last summer, I was very overwhelmed and it took a long time for me to go back through NTM and Mayo Connect forums to learn what I needed to help manage these diseases. I thought this post might make it easier for the newly diagnosed to have everything in one place. Feel free to add to my list with your own recommendations or hacks
For Nebulizing: my favorite is the Innospire Go but it is so hard to get. I also like the Pari Trek
For sterilizing equipment: The Bololo Baby Bottle Sterilizer
For sterilizing water: Crazy Cap, Steripen, Lifestraw
For people with reflux who need to elevate their head: Avana mattress elevator
N95 masks: I love shopmaskc.com for more fashionable N95s
For travel sterilizing: Drizzle Foldable Electric Hot Pot Cooker Travel Pot
For carrying my water bottle when I am out walking: Nuovoware Water Bottle Carrier Bag
One other hack: I did not want to spend the money on all of the water filters in my shower so I just take baths and get my hair washed at a nearby salon. Many of the salons I asked will wash your hair for free if you tip the shampoo person. People do this all the time when they have broken arms etc. I then leave with a wet head and drive home and do my own blow dry.
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Hi!
Just wanted to add…. When traveling I use the Medella disposable sterilizer bags that are used for breast feeding bottles and pump accessories.
A bag can be used 5 + times and only need 2-3 oz of water and microwave!
Hope that helps!
Blessings
Dee
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6 ReactionsWow, thank you so much for summarizing all these helpful tips. I am so new to this and always have so many questions. Thanks again!
I wonder about using things like baby sterilizer. Is it really as good or better than soaking the nebulizer parts in alcohol for 5 minutes?
Do you think one of the UV baby bottle sterilizers would work?? I don't like plastic, and if I need to use it, I try not to heat it. My last go-round I used alcohol to wash my nebulizer pieces, but travel was difficult. Any thoughts?
If I get the Steripen, LifeStraw and Medela microwave bags for equipment and sterilizing my drinking water do you think I would also need the foldable hot pot for travel?
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1 ReactionNo -- I think the hot pot for travel is for times when you aren't in a rental home where you could just use a microwave or boil your water and equipment for 10 minutes on a stove
Yep, got to sterilize the Amikaycin when out of town anyway. Might as well use your hot plate or whatever to boil water too, along with LifeStraw or whatever one you use.
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1 ReactionThanks so much
Hi Thorne,
Many thanks for sharing your experience.
Can Drizzle Foldable Electric Hot Pot Cooker Travel Pot continue to boil water for 10 minutes without shutting down after water is boiling?
Ling
Yes but it would shut off if all the water boiled out
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