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Granny (@goddard)

Bronchiectasis and Gerd

MAC & Bronchiectasis | Last Active: Sep 18, 2020 | Replies (18)

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@goddard

I see it the way you see it. But the recent doc acted like it was not even MAC tho i tested positive on gold standard test in multiple ways and then had multiple gastro tests which all came back negative. . I do not look like a sick person, most of time. Seriously I think that’s part of issue. Anyway, it took wind out of my sails, I quit airway clearance, started getting chills again. My home doc ignored outside expert. It’s confusing.

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Replies to "I see it the way you see it. But the recent doc acted like it was..."

How frustrating. I'll get "on my soapbox" again. As a person with an uncommon condition, you have done the first step and educated yourself. And the second, trying to work with your docs. If your docs don't listen, sometimes it's time for a third step- finding new ones. Feels drastic since we've spent our whole lives being told they were the experts, but we must be our own best advocate.
Sue

I hear you…. I looked very healthy before and still do fully clothed….now weigh 88-92 pounds ….can't keep any weight on…docs take one look at first and sort of roll their eyes….no sign whatsoever that there's so much damage inside.

Now, hear me on this, you must feel comfortable with your doctors because frustration and fear can lead to anxiety which effects your breathing tremendously. The calmer you are the better you breathe. They should be willing to work together for your benefit or step back and let others do their jobs….took me 2 years to find a new pulmonologist who is willing to work with NJH. The first one is young very well educated and found the issue for which I am forever grateful but didn't believe in sputum cultures and couldn't be bothered to work with NJH. Totally unacceptable on both stances in my opinion.

Do the airway clearance….if it's not working drink more water…… humidify the air in your home with copd water, cleaning the humidifier daily, clean your shower heads regularly with vinegar if you shower. Watch what you eat and exercise. This is a whole body wide "congestive issue" so get things flowing again and get your body moving.

I will keep you in my thoughts and prayers…. you've got this!