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(MAC/MAI) Mycobacterium Avium Complex Pulmonary Disease: Join us
MAC & Bronchiectasis | Last Active: Nov 21 5:21pm | Replies (9354)Comment receiving replies
Good Day, my name is Maggie and 10 days ago I was admitted to the hospital with pneumonia and discharged later with pneumonia, bronchiectasis and MAI. They have started me on the 'big 3'. So far I seem to be tolerating these OK as far as appetite, nausea and diarrhea. I see my GP this week. I am overwhelmed, but grateful to have found this group. I have only had one positive sputum test. I had a bronchoscopy, came up with a different rare bacteria (moraxella?), but again negative for MAI. This was my second case of pneumonia this year, so maybe that is why they opted to start the antibiotics. Sad to hear Katherine, someone I never knew or interacted with, passed away.
I am 59, about 15 pounds overweight (though losing weight this year) and was very active. This has kicked my butt. I have no idea where it came from. I live in upstate NY and work as a bookkeeper, with some public interaction. I want to get back to exercising, but need to recover from the pneumonia first. I also see a cardiologist later this month and will clear exercise with him.
Thanks for reading.
Replies to "Good Day, my name is Maggie and 10 days ago I was admitted to the hospital..."
Maggiew, have you been tested for aspiration? According to the radiologist, aspiration can be the cause for bronchoesthasis. The test or xray for aspiration is called video deglutition.
No, I have not been tested for that. I see my GP tomorrow and will ask him. If I don't like that response, I see my pulmonary Dr in Nov & will discuss with him.
@maggiew , Hello Maggie,welcome to our support community. We are glad that you found us. I have found that many of us in this support group has some kind of swallow/throat issues too; it does seem to be part of or cause of our disease. I hope you will come back and share with us what you learned from your doctors. I hope your appointments go well.
I agree with the swallowing issue. Everytime I bring it up at my appointments, I am brushed off.
Jo Ann K
Jo Ann I know the feeling ! You got to I insist to have it done. Give him the guilt trip by asking him how he would feel if you get a bad pneumonia or have lung cancer . If you are aware of the cause you can be more more careful to protect your lungs.
Then you need to find another doctor...
Throat clearing info
@jkiemen, I agree with @boomerexpert . Find another doctor. Aspiration of food, drink, stomach acid, and saliva is a suspected cause of bronchiectasis and mycobacterium infections, especially MAC. Can also cause pneumonias. The Mayo did all kinds of diagnostic tests on me for swallowing. Discovered a hietal hernia and GERD.
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Hi @maggiew and welcome, yes getting back to exercise asap when you feel up to it is very important. I hope you continue to have negitive sputums for MAC and tolerate the meds.