(MAC/MAI) Mycobacterium Avium Complex Pulmonary Disease: Join us

A very supportive group. Ask anything you don’t understand. They are so willing to answer questions and give out great helpfulness. I am a newer member than you are - what a group. I feel they are almost physically touching me with their help.

Thank you Liliane. I'm just taking in all the information. I really like the reminder to take probiotics if I'm on antibiotics.Your message is very hopeful.

Hello! I was diagnosed with Bronchiectesis and MAC along with some related esophagus issues almost 4 years ago- and wow, has it been a tough journey. What I can tell you is that the more disciplined and intentional you get about your health being a top priority and wrap your head around the time and effort it takes - the better off you’ll be Exersizing, good nutrition, proper sleep, and airway clearance are no longer optional. A good infectious disease Doctor is critical. I have found the probiotics to be helpful as well.
I’m wondering what people think about wearing a mask when out in public. They aren’t too fun but after going through two rounds of flu, I am desiring to add some extra precautionary measures! On the positive side - I FINALLY had an improvement on my catscan!! Still hoping to gain more energy and fewer periods of exacerbations. Personally, I find that prayer and inspirational upbeat music REALLY help get me through the daily regimen. Blessings to you - be encouraged - you are not alone, Lainey

They make me wear a mask at the hospital for my protection. We won’t go out to eat till the flu season is over. I am a very cheap date.:) I have worn a mask, but infrequently. I have been encouraged to wear one when out and about or when my grand babies visit.

You mentioned esophagus issues, it wasn't Achalasia was it?

It is a hiatus hernia ( acid reflux issues- “silent”- didn’t know I had it) and a weakened epiglottis ( hence swallowing problems resulting in aspiration )

Thanks for responding I’ve heard mixed reviews on how helpful mask actually are but was advised to wear in any close proximity to general public or anyone not well. I was told that I could be around my granddaughter ( and others, without the mask) as long as I don’t have a secondary infection going on. This condition can make you feel isolated at times The mask definitely sets me apart ( and is hot, fogs my glasses, makes it difficult to talk), etc, but if it is a legitimate part of the arsenal to get well - I’ll keep doing it. Found some colorful ones on line to try to make it fun. Hate having an image of “sickly” or unapproachable

Yes

I have the hiatal hernia also. I got it when I was taking the MAC pills, which is common. I think it may be related. I dont take any acid reducers because they are so bad for you but use gravity, and life alterations, exercise, good foods, eating low fat and early, etc. I'v found the symptoms come and go. Now I barely feel my stomach coming up but 2 months ago everything caused it, I find if I can go to sleep fast, when I wake up in night, all symptoms are gone and I can stretch out almost flat! love that. I wear a mask and avoid sick people, we have to. I'm going for doc appt. in hospital and wearing mask for sure. Going on cruise to mexico with Redhats and bringing mask! Might paint red lips on it haha Christa

You will have to go from being a smoker to being as healthy and organic as possible. Have to get the immune system up. Yup, exercise, organic foods, airway clearance, (get mucous out daily) lots of sleep, no drinking, etc.. No choice now but the fringe benefit is you will look great!