Thoughts about “the watch and wait” approach.

I’ve been recently diagnosed with MAC and my Pulmonologist recommends a watch and wait approach with a 3.5% saline solution nebulizer treatment twice per day. We found this accidentally from a CT scan which showed lung nodules and some bronchial damage.
How can a saline nebulizer treatment help this serious disease? Should I get a second opinion from the Mayo Clinic? Also would like some advice on where to find comprehensive disease information.
Thanks, Lorraine

I was diagnosed with MAC a year ago along with H-influlenza. Treatment for H-flu relieved my fatigue and greatly reduced my cough and congestion. When I was reluctant to start the Big 3, after watching videos and reading of experiences on this and other support networks, my pulmonologist referred me to Dr. Winthrop at OHSU. Dr. Winthrop concurred that treatment would likely be needed, but offered the option of being on a drug trial for six months. I chose to do that and started in July on either clofazamine or placebo. I send sputum samples every other week and have an ECG once a month, saw him at the beginning and half-way point for bloodwork and other testing. All will be repeated at the end in January along with a CT scan which will reveal how well my lungs are doing.
I figured I couldn't get more careful "watching" than that. I nebulize 7% saline 2 x daily, use the Aerobika and walk almost every day. Neither he nor I know whether I'm on the drug or placebo. I was thinking placebo since I've noticed no side effects, but apparently my ECG does show an effect that has Dr. Winthrop convinced I'm on the real drug. He doesn't get the results of the sputum samples and will have to do his own and at the end of the trial. That and the CT scan in January will determine what options are open next, but though my sputum still shows bits of green, my cough and congestion are definitely improved.
Either way, I feel good about contributing to the research, and, with any luck, vigilant airway clearance and exercise will be enough to keep my MAC and bronchiectasis from doing more damage. Thats my 2-cents on watching and waiting. Wish me luck in January!
Anna

I agree with watch and wait, if symptoms are not presenting a health danger. I have bronchiectasis and was diagnosed with MAC a few years ago. I am doing fine with 7% hypertonic saline nebulizing, compression vesting, regular exercise, positive thinking and eating a mostly plant based/Mediterranean diet. I also am cognizant of the power gratitude has in maintaining one's mental and spiritual health.

And yes- a second opinion is always a good idea.

Join the Lung Matters group on Facebook. Excellent source of info on ACT's

I’ve been recently diagnosed with MAC and my Pulmonologist recommends a watch and wait approach with a 3.5% saline solution nebulizer treatment twice per day. We found this accidentally from a CT scan which showed lung nodules and some bronchial damage.
How can a saline nebulizer treatment help this serious disease? Should I get a second opinion from the Mayo Clinic? Also would like some advice on where to find comprehensive disease information.
Thanks, Lorraine

They do have good info. I’ll add a caveat though since you’re pretty new. There’s no allowance there for differing needs and posts sharing successes that differ from the rigid protocol are quickly deleted.
Mayo has an educator teaching airway clearance. I’d try your docs clinic to get an order for that.

Paathy, Are you referring to the Lung Matters Group?

In response to your question of how nebulizing saline can help with a serious disease, many on this site use it and have been successful to keep from going on the antibiotic treatment. 7% saline is used. 3% is used by those who can’t tolerate 7% or are working their way up to using 7%. The benefit is twofold. First, nebulizing the saline loosens mucus so you can get it out better. The nasty NTM and other bacteria set in and grow in the mucus. Second, the saline helps make the lungs inhospitable to the bugs. You may never get rid of the infection but the nebulizing of 7% saline can keep the bacteria tamped down and keep you from getting worse. Those who don’t have symptoms or mild symptoms do this as part of the wait and watch. If you have serious symptoms or it is really affecting your quality of life, then it may be best to be treated.