Being a co-pilot on the journey through NTB MAC & Bronchiectasis

Posted by Roberto @bertodc, 16 hours ago

I first wanted to start off this post by saying thank you to everyone who has shared their journey through living with these experiences. This place has been a great resource to me to share with my mother, who is the one with this (she wanted folks to know that she is participating in this exchange of knowledge through me -- he doesn't do tech that much).

Bronchiectasis was discovered three years back, and the NTB MAC not long after. The theory is that she caught the MAC ages ago, and a diagnosed cancer (which is in remission), allowed it to concurrently do its thing.

In dealing with the NTB MAC, she started off with the big three but had to drop the Rifampin as it was too much for her. Treatment continued successfully with Azithromycin and Ethambutol and after four different tests, she was officially cleared of the MAC in December 2024.

Now, she continues the use of a SmartVest and Albuterol (the nebulizer is totally better than the inhaler form for her). We have the occasional flare ups, sometimes with hemoptysis, but after all this time, controlled breathing and calmness allows her to see the blood and not freak out (which even threw me off the first two times -- and I can be pretty calm about medical issues on the spot). Funny enough, on one of those flare ups, the third time it happened with blood (if I can recall that right), we went to the hospital and they went in with a camera to see this in action. Nothing! The tissue that usually becomes irritated and loosens up basically leaves her via clearing and the bronchial tubes end up nice and clear -- we've got the pictures to prove it. But the goal now is to always make sure she feels clear. Sometimes, there will be wheezing and that's when we know we have to be more on top of it. Other times there's that gravely echo that you know is phlegm building up and you want that out too. It annoys her that some days are good and some aren't exactly perfect, but knowing these things work to prevent bigger issues is what keeps the motivation up.

Anywho, I hope to help provide ideas for anyone wanting to know and definitely don't mind doing so in Spanish too if someone out there needs it as well. Porque los recursos con información de Bronquiectasia es un poco limitada, según lo que yo e podido encontrar.

Roberto

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