Remission: When do you consider yourself in remission from MAC?

Sue, sorry to hear about your episode and I'm glad you recovered so quickly. I wonder if you now think it was a mistake to only neb once a day and recently cutting it down to 4 days a week instead of daily?

Believe me, I have been thinking about that. Probably my mistake was not increasing adding levalbuterol right away when the pollen started, since I know tree pollen is my biggest asthma trigger. I had already upped to daily saline, knowing it was coming... I definitely will go to daily with levabuterol for the summer, at this point I will taper from twice a day to once when and if I feel it is wise. Fortunately I have a wonderful handheld nebulizer that I can use wherever I happen to be...
Sue

Glad you are feeling better Sue. I got sick the first week in May. Coughing and fever for 5 days, then fatigue for a week or so. My doctor said was probably viral. Do you think having Mac/bronchiectasis make our reactions to "illnesses" worse than other peoples? Happy to say that continuing the nebulizer txs and adding musinex kept a full blown exacerbation at bay (though I did produce more sputum than usual during that period). All in all, glad to be back at "baseline". Cindy

What brand is your hand held nebulizer?

I have had reactions like this since adolescence. Every virus ended with a sinus or ear infection, bronchitis or pneumonia. My doctors believe it caused the bronchiectasis, not the other way around.

I use an Innospire Go. They are temporarily unavailable.

I saw that when I did a search. I wonder why they’re on back order everywhere.

Don, DO NOT STOP THE SALINE REGIMEN!!!!!!!! I got lax with it over the last month and now I have the most colonies of MAI than I ever did before. I had been testing negative for MAC/MAI since 2014. Now, add to that, my dr at Mayo took me off of my alternating monthly antibiotics last Dec. I was left with one 10 day run of cipro every other month. Believe me, I WILL NEVER skip the 7% saline treatment again. Part of my neglect with it has been my two week testing for a lung transplant. Most mornings I had to be there at 8:00 a.m. some at 6 a.m. some at 7 a.m. The tests would run all day most days and I was too exhausted mentally & physically to do it at the end of the day. SO, please stay on schedule with that. At least once a day.

You are spot on about that.

Wow, Don, wonderful Mentors, group…this in deed an appropriate discussion.
So, I just left NJH on Tuesday after my yearly follow up…and saw Dr. Daley. Here is what I learned. My scan revealed “improvement “. My broken glass is less…and there is “less tree & bud” on image. So, question to this group….would this indicate that I am reversing the damage of bronchiectasis?
Dr. D kept repeating…”how are you feeling”…as if one of the better judging measures is the patient and patient’s interpretation of “how things are working”. I answered…good. I have increased my exercise for cardio…to my extreme. (Peloton bike with work outs that take me into a red zone of bpm (150 plus) and longer recovery time. I nebulize 7% saline (2 vials) every day…religiously. No meds. Keep vigilant of spreading virus around us and mask everywhere I go. I also go to the dry salt therapy room 2x month or more if I feel my lungs need it. My discussion w Dr D on salt room went like this….”Dr D…what is your feeling on halotherapy (dry salt therapy). He answered..,there is NO scientific evidence…no medical trials supporting…have heard of some cases where the hygiene of the spa like therapy is not good…cannot really recommend it…” I answer…but I have improvement. So he points out…and he is correct…it is not just one thing…care is multidisciplinary…my physical exercise, saline, lifestyle (diet, social activity/discernment, mental, salt therapy, etc etc etc). So, without scientific elimination…you really don’t know.
The end game is…I have improvement confirmed by Scan. My largest nodule has shrunk…and another one in opposite lobe is now just a “freckle” (my words). I don’t cough, have NO sputum (so left them saliva to culture) which of course was negative AFB and showed good lung flora. Do not need a repeat 6month scan…now pushed to yearly.👍🏻
So, sounds like I passed with flying colors. But, Don…I will not say I am “cured”. I will wait for the doctors to give me that one. I will keep up my personal treatment regimen…I did and do celebrate everyday. I will remember the words Dr D branded in my brain….”water and soil are not your friend…TAKE CARE”.
I am grateful to Dr. daley, his team, my home docs, NJH…and mostly to this group. The sharing, the support, the continued prayers we spread over each other….all is part and piece of my personal treatment plan.
Thank every one of you. Now my husband and I are going fly fishing in Colorado….and I will be careful because of water & soil😎

Regina