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Newly diagnosed with MAC and Bronchiectasis. I have questions!
MAC & Bronchiectasis | Last Active: 1 day ago | Replies (20)Comment receiving replies
I am trying to choose between just trying out the treatment and then abandoning it if it causes un bearable side effects or just going directly to the watchful waiting and learning all I can to help myself to keep the bacteria moving out of my lungs thus risking a much shorter lifespan. You are correct. Trying the treatment will at least eliminate regret. Thank you for reminding me of that. It is very difficult. I was diagnosed early April and I haven't even seen the pulmonologist yet. UCLA is a great medical center once you are in the system, but getting appointments to certain specialties is a waiting game. Have you been taught the airway clearance strategies and how to expectorate the mucus? And, how to breathe strategically? I have to laugh at my attempts at a buddha belly. I guess all in good time. Thank you again. Be well. Nancy
Replies to "I am trying to choose between just trying out the treatment and then abandoning it if..."
I took mine 30 mins before bed. Started with the blue for 3 days. Added azithromycin for 3 days and then added the reds and was ok. Take them at night and sleep through feeling crappy.
I was prescribed zyploclone to help sleep. So miss a bunch of the side effects.
I eat a piece of toast when I take them.
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My pulmonologist ghosted me after referring me to the infectious disease doc so I have only an Aerobika for airway clearance. I may not be able to tolerate the treatment and from what i understand with my m abscessus subspecies abscessus the best i can hope for is containment. I have a devoted husband who is supportive of whatever i decide but i figure i owe it to us both to at least try the treatment. If you are as blindsided as i am by this i am truly sorry. I am new too and don't have any wisdom gained from experience to offer. There are lots of terrific and helpful people online here. Try some keyword searches. There is a ton of collective wisdom and empathy. All the best to you.