Anyone doing "watchful waiting" with ACTs but no antibiotics?

Hello,
I am 80 years old and was diagnosed with MAC/Bronchiectasis two years ago and am a patient at NJH. I tried the Big 3 last year and after 6 weeks decided I wanted quality rather than quantity of life. The drugs made me feel worse than the actual diseases. I have hemoptysis and a fungal infection too.

Every 6 months I visit my doctor at NJH and my last visit showed my MAC to be stable but the fungus has worsened -- but I wouldn't know it otherwise. I have discussed with my doctor my decision to "let nature takes its path," which just means all of us will most likely die with the disease as opposed to dying of it, whether we are treated or not.

I have decided to enjoy my life. I use the Aerobika twice a day (no saline or other as they cause my hemoptysis), walk 1-2 miles daily, have been on a Mediterranean diet for 20+ years, and spend my days learning new skills Adobe provides for me through their Illustrator. I read a lot and have authored a children's book, write poetry and prose, and am enjoying other art creations.

In other words, I keep busy and refuse to let the diseases prevent me from enjoying my life. My mother lived to 101 and my father to 96, although neither had these diseases. I will attempt to add more years to my life -- with the understanding that pneumonia or Covid or other lung related viruses may prevent me from doing so.

Each of us can make decisions we feel is best for our own quality of life, and I wish you the best as you make your own decision(s) moving forward!

Yes, depending on the type of MAC infection and your status, which would include the CT scan results and how you are feeling, "watchful waiting" is an acceptable choice for many. Some things to consider are; how is your health other than this present concern? Are you having lots of symptoms? Have you been ill with lung infections like Pneumonia? Do you have a chronic cough? Are you doing airway clearance? These are all things to be considered as well as what your CT scan shows. It is best to consult with a Pulmonologist that is knowledgeable and practiced in caring for patients with Bronchiectasis and MAC. Another consideration is that some people do not have problems with the 3 antibiotics. I do not have experience with the Big 3 (yet and fingers crossed) so I cannot speak to that. Best of luck to you and this site is a great resource for support and information. I certain others will reach out to you soon.

Brava! Brava! Brava! You are the first person I have "met" who is choosing this path. I certainly don't have your eating history, but I eat healthily and my spouse is a chef by training. Yay! You sure are doing all the right things for longevity and quality of life. Keep on keeping on! Check in once in a while so I continue to know there is someone else out on the limb of the tree working all the angles hoping to delay when the limb might snap and fall. Good luck! Thank you! Nancy

Dear @cwal, Thank you very much for your comments. I was very unlucky to get diagnosed with these two things, but lucky that my CT scan wasn't horrible, only had 1 hemoptosis episode and mostly no symptoms. ID doc said in April, 12 months and you will begin to feel symptoms. Doing all the ACTs and exercising a lot. Getting great care. Starting nebulizing tomorrow. Thank you for all your helpful suggestions. Keep those fingers crossed that the Big 3 will not be needed. hope you will check in and let me know how you are doing. Till next time. Nancy

loreofox80: Thank you for your support and comments. I appreciate it!

I also want to enjoy what time I have. I am 74 years and was told that the treatment was worse than the disease. That even by taking the medication your chance of getting rid of it was slim. I was diagnosed with MAI and bronchiectasis four years ago. Walk 5 miles every morning and twice a day airway clearance with a vest. So far doing good. Don’t want the medication treatment because it would make my health worse. This is my choice and the doctors actually agree with me . So I know everyone has their own story but I decided to Watch and Wait and it has worked out for me so far.

oh, what is MAI or is that a typo? Nancy

MAI is basically the same as MAC

I was diagnosed with bronchiectasis in 2016, but believe I had it for quite a few years. Diagnosed with MAI in 2016 by bronchoscopy. My last 2 CT scans showed no new nodules and waning existing nodules. I feel good for the most part and have a few exacerbations that did not require hospitalizations and recovered. I decided against the antibiotics for the same reasons as others. I am sensitive to drugs and really didn't feel I was there yet. Been nabbing with saline for 9 years. First 3% and last 2 months 7%. Doing airway clearance with postural drainage and breathing techniques. Could not use the Smart Vest. I do have a healthy diet and have been spending more time in cooler climates as I feel much better.
So far so good and wishing us all successful journeys. Oh yeah, I am 75 and also have hymoptysis.

Recently diagnosed with bronch and macrolide resistant m abscessus subspecies abscessus. 78 years old. Feeling ok with only cough, shortness of breath, and fatigue symptoms. About 99 percent sure i will refuse antibiotics. Quality of life right now is pretty good and i take one day at a time. Thank you all for your input. It is good to know i have company. You all are inspirational.