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Granny (@goddard)

Bronchiectasis and Gerd

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

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@painter2

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!

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Replies to "I hear you.... I looked very healthy before and still do fully clothed....now weigh 88-92 pounds..."

Mentors?

I think this was supposed to go to Granny….😳 I'm still doing something wrong

why is it hard for local docs to work with NJH? I thought NJH prided themselves on working with local docs — maybe I got that wrong. Im looking for new institution to go to like I said above– the hospital I have liked have been in LA, NYC and New Hampshire- the one I got the original MAC diagnosis from was in a city where my son lived (LA) but he moved, so I got a 2-fer one by going to the doctor there– Id go to see my grandchildren , son DIL and also go to good doc I liked, in a smoothly run hospital. I have another son who lives in San Francisco and I'm already a patient at UCSF so I might go there. Another son in Denver– so NJH would be possibility. I think NJH is very involved in gastro approach, whatever that is?

Painter2 Your advice is perfect! And what a great way to picture it…get things flowing again.
The docs believe that my hiatal hernia caused silent gerd and nighttime aspiration caused the bx and Mac. I sleep on a wedge as well and have sleep apnea, afib and Arthritis to boot!! It all keeps me busy! Lol