← Return to Did your MAC symptoms improve once you started Big3?

Discussion
Comment receiving replies
Profile picture for Sue, Volunteer Mentor @sueinmn

Hi Jill, Chronic illness does have a way of changing our thinking, doesn't it?
When I was first diagnosed with MAC and Bronchiectasis, whether or not to treat wasn't even presented as an option - I was so ill I couldn't even walk 1/2 block without stopping, and I had been coughing non-stop for over 6 months - I had both MAC and Pseudomonas as well as uncontrolled asthma. To say I was miserable would be an understatement. I was so happy to find Mayo Connect, and the wonderful people here, it was a lifesaver.

I don't know your age, but the Aging Well Group discussions are really applicable and helpful to anyone with a chronic condition - it helps us find new ways to think about "what's next?" This discussion, started by the ever-helpful member @edsutton might be a good place to start reading:
https://connect.mayoclinic.org/discussion/happiness-for-old-folks/
Another thing I remember vividly from my first pulmonologist is "Bronchiectasis is a disease you live with, not die from. Do your best and get on with your life." I thought it was a callous thing to say when I was so sick, but he was a crusty old dude... This has been repeated a number of times, and in a number of ways, by my primary, ID doc and 2 subsequent pulmonologists over the past 7 years.

And here I am, still hanging in there - taking a break from major garage cleaning with my husband to have a telehealth visit with my two pulmonologists.

PS My Mom had Bronchiectasis and MAC for years, never took antibiotics except for exacerbations, and died of a completely unrelated disease in her mid-80's. I guess that helps me believe in what the doctors say ( and management, with 7% saline & airway clearance is so far advanced to 15 years ago!)

Jump to this post


Replies to "Hi Jill, Chronic illness does have a way of changing our thinking, doesn't it? When I..."

Hi Sue, I appreciate your knowledge and words of advice. It brings comfort hearing your point of view and how you’ve managed your care. Did I understand that you were able to get off the antibiotics and manage your treatment with nebulizing the 7% saline only? I’m hopeful that I will see good results with nebulizing without the antibiotics for awhile.