1. < MAC & Bronchiectasis

ACT

Posted by carol77 @carol77, Sep 14 11:33am

I have had Mac for at least 3 years.
Recently confirmed.
My doctor just said to wear a mask when doing yard work. Follow up next year. Ordered Symbicort. Never mentioned anything about water.
I’m learning so much about MAC.
I have started boiling my water. I use a insta pot. Changed my shower head and had my water heater turned up.
Shouldn’t I be doing the Air way clearance and doing neb with albuterol and saline? To prevent further damage .
I have Bronchiectasis in my right middle lobe.

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rosa80 | @rosa80 | Sep 17 7:26pm
In reply to @carol77 "I hope all goes well. I asked my pulmonologist. Waiting for a reply. Did yours mention..." + (show)
@carol77

I hope all goes well. I asked my pulmonologist. Waiting for a reply. Did yours mention water? Steam from shower is not good. Just curious because mine never did.

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Hi carol, my pulmonologist never mention any preventive measures, I have to find out myself, this forum helps me a lot.

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sori | @sori | Sep 18 7:53pm

My pulmonologist never mentioned anything about ACT or how to take precautions to protect us againts NTMs. I did my own research. I am so glad I found this group. Every day a learn something new that helps me to stay stable and understand BE better.
Thank you so much for sharing and for your support. We are not alone!

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pacathy | @pacathy | Sep 19 6:51am
In reply to @carol77 "That definitely makes sense. Yes I probably should see a specialist. I’m 3 hours away from..." + (show)
@carol77

That definitely makes sense.
Yes I probably should see a specialist. I’m 3 hours away from Mayo Clinic in Rochester. Thank you so much

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Mayo was great and had me meet with a nurse educator about airway clearance.

My initial pulmonologist helped get my horrid cough from sinus drainage under a bit better control, but didn’t mention the bronchiectasis on second CT and was “watching.” He went o medical leave and I became impatient to get a diagnosis and plan.
Just FYI, I called Mayo and they suggested I call on a Monday afternoon or Tues a m to try to snag a cancellation and it worked. I had a bunch of tests and a bronch within a week. Med changes followed.
I’m following with Penn med now and am much improved.

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