Tell us how you "Live Life Fully" with Bronchiectasis and MAC

Hi everyone, I have recently joined this group and would like to start by thanking you all for the information you share and amazing support. This is already helping me a lot ❤️. I was diagnosed with BE with MAC and Staph Aureus about two years ago, while I was living in Switzerland. Having survived cancer (NHL) 30 years ago, at first I was just relieved that the diagnoses was not cancer. The pneumologist and infectiologist decided we would treat the staph aureus and observe if MAC or staph were causing the symptoms. I also started nebulizing with saline and was taught the ACBT technique. At the time I was busy supporting my husband after a heart attack, my children had just entered university and I had a full time job. One year ago I retired and moved with my husband to Portugal and my new pneumologist is currently doing all the studies (samples, CTScan, etc.) to see if it is time to start MAC treatment. We started physioterapy which is very helpful and I am now consistently doing lung clearance 2x day. One thing that surprised me is that she told me that she does not recommend nebulizing simply due to the risk of contamination of the equipment. I always followed the instructions to wash and sterilize the cup and mouth piece of the nebulizer but per the instructions the connecting tube could not be washed or sterilized and this always worried me. So now I stopped nebulizing and actually don’t notice much difference. Instead I follow the advice to maintain well hydrated, exercise as much as I can and never skip lung clearance (even when I feel well). I am terrified about both starting treatment and not starting treatment and having disease progression. I am also terrified about not being able to escape MAC in the environment and am trying to learn as much as I can and see what I can realistically incorporate in my daily life to minimize the risk. I don’t want to live in a bubble and isolate from my loved ones so I am trying to stay positive. I started learning to play the piano just to keep my mind busy with something else and this is also helping a lot. Although I am still terrible at playing, I love the time I spend playing. and pushing myself to improve 🎶
Thank you again for the great support ❤️

I hope you don’t mind the fact that I am not living in the US. I did live in Cincinnati, Ohio for 10 years and both my children were born there. It was a very happy time.

@paulastevens
The fact that you do not live in the US does not make a bit of difference and I am sorry that current differences and attitudes have made it so that would be questioned. You are welcome here on this forum.

@cwal Thank you for the warm welcome

@narelled23
Thanks....I will try anything that might help this SOB.

@snoei
Hi! I use the 3M Aura Particulate N95 Respirator 9205 flat fold with no valve. I get them on Amazon. I like these because they have 2 straps - one to go over the top of my head and one to go behind my neck - which feels tight enough once I pinch the nose part and pull the other parts as tight on my face as I can.

@sarahlynn1960 Thank you!

Hi, everyone. Figured I would speak up again about my journey and hope my experiences will reassure/encourage anyone who has been diagnosed with MAC to seek treatment and to stay as active as possible. I am 81.
As background I was very active from the get go. I have lived in the desert southwest since 1970. My 2 wonderful children were born in my late 20’s and I began road running and then mountain trail running in my 30’s and continuing until I was in my mid 60’s when I began long distance hiking instead. I retired in 2000 and was caretaker for my mother who was formally diagnosed with MAC in her late 60’s. She died when she was 89 in 2009. She was prescribed levaquin when she had flares. Her diagnosis came before the Big 3. She was active socially and loved to play bridge although she did not exercise much due to osteoporosis after she turned 80.
In 2004 my husband and I travelled to NYC for the birth of my grandson and upon my return I came down with a suspected pneumonia that wiped me out for a month. We suspected I picked it up in the hotel in NYC or the plane. After that I struggled with bronchitis frequently especially during winter months here.
I was formally diagnosed with MAC in 2012 when I asked my mother’s pulmonologist for a bronchoscopy because I kept struggling with bronchitis. I immediately started azithromycin, ethambutol and rifampin for 18 months. There were times especially with the periodic severe flu like side effects of the rifampin when I wanted to quit. I had regular check ups with my ophthalmologist to make sure the ethambutol was not damaging my eyes. It did not. I never experienced gastro troubles with the antibiotics after being advised by my doctor’s nurse to drink a cup of kefir daily at least 4 hours after taking my pills. I walked 2 miles a day during that period. The symptoms disappeared completely.
I then ramped up my hiking for annual trips to Canada, England, Switzerland, Peru, here in the US, etc until COVID hit. About 2018 or so I was diagnosed with bronchiectasis and the CT scans revealed a return of MAC as well although I was not slowed down too much. I was also caretaker for my adult daughter for 30 years as she battled anorexia and other co-morbidities.
I had COVID twice until the vaccine was released and then once more. I was prescribed an antibiotic as backup to avoid bacterial pneumonia. My daughter died in 2021 - an enormous loss - and my health has markedly deteriorated since then as I seem to be more vulnerable to any virus that comes along plus struggle with periodic BE flares. On top of everything else, I had a complete hysterectomy last Spring.
I wear an N or KN95 mask whenever I go shopping or to gatherings in enclosed places or doing any house or yard work. On windy days I either wear a mask or stay inside. This spring has been particularly difficult with a LOT of pollen. We keep the doors and windows closed. We have a whole house water filter plus an additional undersink filter which I use for all my drinking water. We usebottled water otherwise. Our water heater is at 130 degrees. We have exhaust fans in our bathrooms and set the shower head to avoid spray mist. We take off our shoes at the door.
I am busy socially and continue to hike with my husband and friends at least three times a week and am determined to continue an active lifestyle as best as possible.
I think it is important to stay active, have fun with friends — in other words get out and about. I am grateful for waking up each day and having had wonderful doctors and pulmonologists along the way. Hang in there!!

I forgot to add that following a bronchoscopy in March, I was diagnosed with pseudomonas aeruginosa and prescribed tobramycin for a month. The treatment of twice a day nebulizing of that and separately 7% saline followed by huffing and clearing my lungs was very very difficult and exhausting as the coughing at night interfered with my sleep. A recent sputum reading did not reveal the pseu a nor white cells. I am taking azithromycin three times a week now and continuing nebulizing daily 7% saline. Each night I use saline nose spray followed by Aller-flo. I have needed to take Claritin every other day, too. But I am sleeping well - a huge improvement and I am back to hiking 3-4 miles at a time four times a week.

It’s been 2.5 months on Brinsupri. Older females will appreciate my quality of life moment was not having to wear pads day/night because of coughing and stress incontinence. I’m 75.