1. < MAC & Bronchiectasis

Water at freshwater lake

Posted by kathyhg @kathyhg, Jul 27, 2019

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?
Thanks,

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marilynk | @marilynk | Aug 7, 2019
In reply to @sandykayhud "Exactly what is throat coat tea? No familiar with it." + (show)
@sandykayhud

Exactly what is throat coat tea? No familiar with it.

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Organic Throat Coat supports throat health with all herbal ingredients. Licorice root, slippery elm, marshmallow root and about 4 other - wild cherry bark, fennel fruit, cinnamon bark & orange peel. I like to add raw honey. I got mine at Sprouts located where all the teas are. My case nurse told me about it.

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sandykayhud | @sandykayhud | Aug 8, 2019
In reply to @sandykayhud "At this point I am just waiting to try and get voice back. It has been..." + (show)
@sandykayhud

At this point I am just waiting to try and get voice back. It has been completely gone for over a week. My pulmonary dr is trying to get me in at UAB with dr that specializes in MAC so will probably not start anything till I see him. Have you had anyone who tried the Arkayce and lost their voice who did not get it back? Getting sorta concerned. My husband may enjoy the peace and quiet but even he is getting ready for some noise from me!

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just an update:After 12 days I am getting my voice back!! Dr still does not want me to restart at this point.

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1 reply
sounder27 | @sounder27 | Aug 8, 2019
In reply to @sandykayhud "just an update:After 12 days I am getting my voice back!! Dr still does not want..." + (show)
@sandykayhud

just an update:After 12 days I am getting my voice back!! Dr still does not want me to restart at this point.

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Sandykayhud. YAY!!!! So glad to hear it!!!

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sounder27 | @sounder27 | Oct 2, 2019
In reply to @rits "Thank's for asking, Sounder. The training went great but I was short of breath and I..." + (show)
@rits

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!

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Rits. I had my first dose of Arikayce today. Nurse came and all went well. It seems I will be taking it every day unless I have a reaction. Were you able to go back on the Arikayce again after your breathing problems? I am hoping all goes well, but time will tell. I’ll keep you posted. I will take in the morning and then go to work right after.

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Tina Sims | @tinaesims | Oct 3, 2019

We talked about lake water. What about salt water. I am going on a family vacation and would like to snorkel with them.

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Jennifer | @megan123 | Oct 4, 2019

Hi Kathy....my understanding is that there is very little MAC in salt water, if any??? The ocean is the only place I swim when on vacation...I don’t dunk

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Mentor
Terri Martin, Volunteer Mentor | @windwalker | Oct 4, 2019
In reply to @tinaesims "We talked about lake water. What about salt water. I am going on a family vacation..." + (show)
@tinaesims

We talked about lake water. What about salt water. I am going on a family vacation and would like to snorkel with them.

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@tinaesims Mac is everywhere in the environment, including the ocean. Although, I don't believe in as high a concentration as ponds, lakes, and hot tubs. If you are not super sick with this infection, I would go for it. But, if you have a very fragile immune system.....where are you planning on snorkling?

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2 replies
Tina Sims | @tinaesims | Oct 4, 2019
In reply to @windwalker "@tinaesims Mac is everywhere in the environment, including the ocean. Although, I don't believe in as..." + (show)
@windwalker

@tinaesims Mac is everywhere in the environment, including the ocean. Although, I don't believe in as high a concentration as ponds, lakes, and hot tubs. If you are not super sick with this infection, I would go for it. But, if you have a very fragile immune system.....where are you planning on snorkling?

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We are going to Puerto Rico this year. Snorkling has always been a family outing.

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1 reply
rits | @rits | Oct 6, 2019
In reply to @sounder27 "Rits. I had my first dose of Arikayce today. Nurse came and all went well. It..." + (show)
@sounder27

Rits. I had my first dose of Arikayce today. Nurse came and all went well. It seems I will be taking it every day unless I have a reaction. Were you able to go back on the Arikayce again after your breathing problems? I am hoping all goes well, but time will tell. I’ll keep you posted. I will take in the morning and then go to work right after.

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Thanks for asking, Sounder. I just posted an update on the original post "Arikayce - nervous to start". I hope that posting there will bring it up to the front.

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1 reply
Tina Sims | @tinaesims | Oct 6, 2019
In reply to @windwalker "@tinaesims Mac is everywhere in the environment, including the ocean. Although, I don't believe in as..." + (show)
@windwalker

@tinaesims Mac is everywhere in the environment, including the ocean. Although, I don't believe in as high a concentration as ponds, lakes, and hot tubs. If you are not super sick with this infection, I would go for it. But, if you have a very fragile immune system.....where are you planning on snorkling?

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I've also started the Big 3, but so far so good.

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