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Mentor

Please Share your MAC and Bronch Success Stories - However Small

Posted by Sue, Volunteer Mentor @sueinmn, Aug 22, 2021

Please tell us about anything you have done to keep the dreaded infections at bay, or improving your health/breathing/energy.

@thumperguy and @kathyhg - you have both told us good news lately, care to share?
Sue

Interested in more discussions like this? Go to the MAC & Bronchiectasis Support Group.

Mentor
Sue, Volunteer Mentor | @sueinmn | Sep 19, 2021
In reply to @ljfoo "Sue, you mentioned you use a rainfall shower head. I looked online and ACE Hardware has..." + (show)
@ljfoo

Sue, you mentioned you use a rainfall shower head. I looked online and ACE Hardware has a Waterpik Rainfall shower head but the specs doesn't indicate the size of the holes. What brand did you buy?
lora jo

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Sorry,I don't know. It came from Builders Supply on line, and it matched my fixtures, can't find any other info, but I can tell you it takes a huge effort to create any steam!

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1 reply
kathyhg | @kathyhg | Sep 20, 2021
In reply to @ckscoville "Not a MAC success story, but definitely a bronchiectasis success: Last spring one of my doctors..." + (show)
@ckscoville

Not a MAC success story, but definitely a bronchiectasis success:
Last spring one of my doctors at Mayo thought that my bronchiectasis seemed harder than usual to treat, so -- in consultation with another doctor -- he ordered a sweat test for cystic fibrosis, even though I was 72 years old! After that test came back positive, they ordered a DNA test, and that also came back positive for cystic fibrosis! After the new diagnosis, I was put on a new medication (Trikafta) this past summer ... and that has made a WORLD of difference! After the initial "purge" (a common occurrence when first taking this drug), my coughing, etc., have decreased considerably. I can finally lie down to go to sleep at night without a 20-30 minute coughing fit beforehand! Trikafta is definitely a miracle drug, and I am also so thankful for my doctors, nurses, and others at the Mayo Clinic.

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So glad to hear that you’re feeling better and that you have a doctors who look at every option to help you.

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n4seth | @n4seth | Sep 20, 2021
In reply to @ljfoo "Thank you Seth for the info about medical grade shower heads. Did your health insurance not..." + (show)
@ljfoo

Thank you Seth for the info about medical grade shower heads. Did your health insurance not cover the costs? It's a hefty price tag.
And here's a question for all: I have a tankless on-demand water heater. I've turned it up to 135 degrees F as you and Sue suggest. When the water is in a tank that's always at 135 degrees, it kills the MAC. But when it comes on-demand, how does that work? After I've run the water to warm it up (and catch it in buckets to water the garden) and the water gets to 135 degrees, does the MAC die instantly upon contact with 135 degree water as its coming through my shower head?

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I did not even think about asking my insurance company but that is a great idea. If I can make them last for 3 years It is worth a try …. Nancy

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pop55 | @pop55 | Sep 21, 2021

I was diagnosed with Bronchiectasis in 2007 and in early 2020 with MAC. My first culture showed Mycobacteria Avium complex and then several after that showed Abscessus. Turns out the cultures showing Abscessus were incorrect except possibly one. I have never been on any treatment for MAC. I went to NJ last November and Dr Huitt said I had a good chance of getting rid of the MAC without treatment if I stuck to her GERD Rules and using the 7% Saline, Vest and the Aerobika 2 X daily. I boil my drinking water and try to keep my refulx in check. Like many others in this group I agree that the 7% along with the Aerobika and Vest have made a huge difference for me and helped to keep Mac under control.

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lora jo | @ljfoo | Sep 21, 2021
In reply to @sueinmn "Sorry,I don't know. It came from Builders Supply on line, and it matched my fixtures, can't..." + (show)
@sueinmn

Sorry,I don't know. It came from Builders Supply on line, and it matched my fixtures, can't find any other info, but I can tell you it takes a huge effort to create any steam!

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Thanks, Sue. I'll keep looking.

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happy2023 | @happy2023 | Apr 22 1:49pm

Sue, I replied to one of your posts, but think I didn't click on the Post Comment button......
I have bronchiectasis and colonized pseudomonas.
You said in your post that it is important to continue airway clearance. And I follow many of your recommendations.
I walk almost daily, do yoga and tai-chi, also postural drainage, and sometimes when I block up with mucus in the afternoon, I steam for 4 to 5 minutes. I reserve airway clearance (nebulized saline and SmartVest) for the morning and evening.
As I have arrhythmia, my pulmonologist switched me from Albuterol to Levalbuterol.
Wishing good health and good results to everyone.

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