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I was told to move out of State or expect to be on Oxygen
MAC & Bronchiectasis | Last Active: Feb 17 11:24am | Replies (39)Comment receiving replies
@cholash More or less the same time. I was diagnosed with BE after a CT scan in October last year and the MAC after a bronchoscopy in Nov, and no I don't have any other lung condition. I'm going to see my pulmonologist tomorrow and going to ask for a referral to another Infectious disease doctor who works with the BE/NTM population .
Replies to "@cholash More or less the same time. I was diagnosed with BE after a CT scan..."
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@hilarys26 I'm somewhat concerned that a doctor would make such a statement. While there are parts of the US (and the rest of the world) where NTM/MAC are more prevalent, unless you live on the edge of a swamp/wetland, that is an extreme measure!
When first diagnosed, most of us have never heard of MAC, NTM or bronchiectasis.If we dive into Dr. Google and some Facebook pages and websites, we get scared.
Please do talk to you pulmonologist about the matter, and yes, find a different ID doc.
Years ago I read on a site dedicated to Bronchiectasis that I had no choice but to give up gardening and swimming. On top of the new diagnosis, meds, airway clearance, and feeling like #$%^ that about pushed me "over the edge" and left me crying in my PCP's office.
She urged me to talk to my ID doc (my pulmonologist at that time was a cranky old dude.) I left the ID doc's office with a new insight, that I have lived by for the past 7 years, and repeated to countless people on this site and others:
"Take reasonable precautions, then go out and live your best life. Bronchiectasis is a disease you will need to learn to live with, but it is VERY unlikely that you will die from it."
So, I swim in lakes, oceans and outdoor pools. I garden - masked in dusty situations, and leaving the soil turning and mulching to others. I stay away from sick people, and mask if I cannot. I travel a LOT, control my asthma, eat healthy, exercise, rest when tired, and do airway clearance. And I have been MAC free for over 6 years. Without antibiotics.
Do you have any guidance about precautions to take?