Life while being treated

Hi Sue, I wish we can all achieve this.
You only need to do airway clearance once a day and neb saline when you have exacerbations. I am curious what this decision is based on? Is it based on how much mucus you produce? How long have you been practicing this?

Ling

I was never told about airway clearance until I did some research myself. If I had started that when I was on meds I might have remained clear of the MAC. I was never told about probiotics either. My whole system suffered. Not sure what to do. My ID appointment is next Thursday. Hope you stay well.

Well, I have explained the progress before, but cannot find the post.

In December 2019, my CT was stable (improved from when I started the Big3) and 2 of 3 cultures were positive, but the bacterial load was down from before starting meds daily 6 months earlier. I was very sick and weak from the meds, so we stopped them.

For 2 years I did twice daily airway clearance with 7% saline and produced less and less sputum. My lungs stayed the same, and 50% of cultures were negative. My biggest issue was poorly controlled asthma, which caused daily coughing fits, SOB (shortness of breath) and about 3 respiratory infections a year. Then my pulmonologist tried Symbicort and it was a game-changer right away. Lost the cough, NO exacerbation, improved breathing - in spite of caring for young grandkids for a whole year. I switched to once a day saline and airway clearance and had another year with no exacerbation, then gradually reduced saline to 2-3 times per week with pulmonologist's okay. I still do daily airway clearance.

In September 2024 I got Covid for the first time, with a mild exacerbation managed by one course each of steroids and antibiotics. It was also determined that my remaining SOB was due to a heart blockage and not my lungs. My November CT was still stable, not sure about NTM status as I couldn't produce good specimen. At our appointment in December we talked at length and decided to try a "vacation " from the saline, but continue airway clearance and Symbicort. We're at 3 months now, I had one week of "feeling off" where I used saline every day and got better. We meet again at the end of May and will decide whether to go back to saline or stay as is. I won't have any issue producing sputum then - it will be allergy season, when I produce plenty of mucus.

As to how much mucus I produce - it varies from maybe a couple teaspoons to lots when I have an infection. In fact, the increase alone signals me to grab the nebulizer.

Sue, many thanks for sharing your journey, what a journey.
I am so happy for you that you have found your way. You use Symbicort, do you have to use Breyna also?I found Symbicort opens me up, otherwise I feel very congested, stuffy and tight. But I find that I also need Breyna at the same time. without Breyna, my mucus seems so sticky and hard to get out. And after air clearance I don't feel very clean. My ID doctor says I could use both Symbicort and Breyna, but I feel it might be too much. I am still testing if I could use symbicort only, so far not successful.
Thanks again and take care.
Ling

Yes I guess age has something to do with it. I’m 67 and I want quality of life. I don’t want to live feeling sick, sitting on a toilet seat lol feeling nauseous and facing the tablets/capsules at 6am in the morning. To top it off no good health care, feeling that you are just a number, which you are haha and that they don’t really care about your side effects because they are too busy or for whatever reason don’t get back to you for 18 days and a dozen phone calls to get a response. Do, you end up with permanent problems. Boy! That feels great, I got it all out. I’ll take one good year doing what I like than meds for the rest of my life, well toxic meds. They are probably giving us other long term effects, I find it hard to believe some have been in these for 5?yearsbor done it 3 times for 18 months without it having effects on the bodies organs. Plus I can’t take the tiredness I feel on them. So once for me if it comes back, what happens will happen, I just hope these meds haven’t stirred the bacteria to come back with a vengeance. Sorry, just my feelings about this.
Although I know some taking these everyday and have no side effects whatsoever. I could not do these everyday, no way.
I wish you the best with your treatment.

I've been super blessed when treating MAC (as an overachiever, I got to treat it twice in a 4-year span). I hiked parts of the Appalachian Trail while on the Big 3 and when I was on Arikayce and two of the Big 3, we took our travel trailer and went on a 6-week trip to Maine and Canada and did tons of hiking and camping. I am retired, so I didn't have to juggle work or children at home, which I have huge admiration for those of you dealing with those extra responsibilities!

But everyone is different in how they respond/react to treatments. There's lots of tips and tricks to manage side effects, and hopefully if you do have some, you'll be able to work through them. Many people in my support group were like me, with little to no problems, but others did have to change or stop certain drugs.

Best of luck!!
Laurel

Thank you so much for your honesty. I am 58 and still work if only part time. The meds took away my full time successful career as a teacher. Like you I do not want to experience all those side ecfects again. I want to be able to teach 3 days a week. Thank you for your understanding. Live life to the full.

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Your experience is what I aspire to if I undergo treatment! Somehow, I've lived with this disease for years and aside from periodic annoying ("bad") cough (not every day) and occasional shortness of breath, I've led my life as I would have anyway. Can you say a little more about your situation? Why two separate treatments in 4 years, and are you testing negative now? Do you have bronchiectasis in addition to MAC? I ask because I have both. And, I'm very active and independent. I worry about vision damage especially; I live alone and my life would be undone if I couldn't drive or do things I enjoy like skiing, pottery, pickleball, piano, traveling.

I’m 54. Was Asymptomatic when diagnosed w/ MAC incidentally on cardiac chest CT (+ ofc pulmonary workup). I’m otherwise healthy and active. Started big 3 in January 25. It was an adjustment - headaches and mild nausea (although I also had a stomach flu which confused everything). I had to drop rifampin bc of heart palpitations. I’m glad to say that after 2 mos of emotional and physical adjustment, I feel good. I’m back to normal life and trying to keep up with Peloton and light weights and walking dogs and working. I’m not a crazy exerciser but trying to stay strong as I get older and keep up with fitness even during treatment. Good luck. Avoid other websites that have too many voices and what I see as misinformation.

Happy to elaborate! I was diagnosed as an incidental finding on a CT of the chest (my first CT in my life) for something that turned out to be nothing. I had no symptoms. They also discovered very mild, focal BE in my right lung, which they are pretty sure was caused by radiation for DCIS (Stage 0) breast cancer in 2006/07.

They did a follow-up 3 months later (right after I hiked the Grand Canyon) and my nodules, etc., were worse. Saw ID and she said let's see what happens in December. I started airway clearance, etc., at that time. The December CT showed more advancement and so even though I still was asymptomatic, we started the Big 3 1/20. We left to hike the AT in late February, with me carrying all my meds, Aerobika, etc., and made it 240 miles before COVID shut down everything. Came home and continued the meds and after 15 months and finished treatment March 2021 (back on the AT for that last month). We hiked 1100 miles that time out, so we'll never know if it refractory or new infection, but my August 2021 sample grew MAC again. Long story short, I started back on the Big 3 January 2022, converted in March but then flipped back positive in June. After languishing for 12 months, we dropped the Rifampin and added Arikayce in April of 2023. I converted in June and have been negative since. I successfully completed treatment June of 2024 so I'm eight months clear. Yay!!

I have occasionally grown weirdo bacteria, because I am extra. Chelonae twice in 2020 (went to NJH and it disappeared and didn't come back for over two years. One of my samples at NJH cultured Chimera (but never again anywhere) and I grew Gordonae a few months ago just to keep life interesting.

My eyesight actually improved slightly while on Ethambutol. (told you I was weird) I did do a lot of research and with the blessing of my eye doctor and ID doctor, I started a zinc/copper supplement. I do have large optic nerves, we discovered, but my eye doctor also monitored my optic nerves very closely as well. Of course I got hearing tests frequently, and even more frequently on Arikayce. But again, I never had any issues, and for that I'm super grateful.

You sound very active and in good shape. That will definitely help with taking the medications. Stay active, do cardio, keep up muscle mass, and try not to drop too much weight. Take a good probiotic and figure out the timing of what to take when that works best for you (NJH likes you to take them all at the same time, but many ID doctors will let you space them). I was again an exception in that the less food I had in my stomach when I took them, the better -- but discuss with your doctors and find what works for you. (Some people take them at bedtime and sleep off any side effects, for example.) Most doctors, mine included, has you phase in the meds so if you do have problems with one, you'll know what it is and not starting all 3 at the same time.

Again, GOOD LUCK, and I'll be cheering for you over here in Knoxville!

Laurel