Life while being treated

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.

Hi Sue what do you use for airway clearance and many times ie 10 in and huff x 10 times in a session? Oh, I just read your comments again, you used saline nebs. Do you use a device as well as the nebs?

I am "on a break" from saline nebs unless I detect an issue - for example, it is tree pollen allergy time, so I will begin nebbing 1-2 times a week as a protective measure.
My airway clearance is Breyna (generic Symbicort) inhaler, a glass of water, then my coffee, followed by one of these - 30 minutes yoga, a brisk walk followed by huff coughing, or pattern breathing with Aerobika. I don't even know what you would call my pattern, a combination of deep breaths, holds, coughs, Aerobika if needed, and if the mucus is stubborn some inverted poses. If I'm using saline, it's after coffee and before clearance.
So my airway clearance is integrated into my morning routine and takes about 10-20 minutes after yoga or walking. How far do I walk? 15 minutes to an hour depending on weather and time I have.
After that I have breakfast.

(Not shouting here, just emphasizing) I DO NOT TRY TO GET EVERY DROP OF MUCUS UP THROUGH AIRWAY CLEARANCE BECAUSE I WOULD NEVER BE DONE. I expel mucus throughout the day with huff coughs and spitting or swallowing just like I have done for most of my life.

I am not prescribing my method for anyone else, just telling what works for me. Everyone needs to find a method that works for them and can integrate into their life. It took 5 years of trying things to get here, and I know it may need to be adjusted if my BE gets worse or I get MAC again.

This is the only way I can possibly keep this up for going on 7 years now. When I have an episode, I do this twice a day, but it's very rare right now.

Hello, I also have BE and MAC, I found out August 2023 with CT and incidental findings. I’m still asymptomatic
I’m pretty healthy , I exercise, hike, play pickleball etc.
I go to NJH , we did a watch a wait with saline 7% and. ACT. We repeated a CT of the chest 6 months later with showed slight worsening. TheID doctor recommended to treat with antibiotics. It was a hard decision for me but I went for it. I started the Big 3 November 2024.
I have been doing really well so far. I take probiotics daily away from the meds. I take the antibiotics all at the same time with a cracker or two in the morning. Then I eat a meal about 2 hours later. Occasionally I get a short mild stomach cramp about three hours after the ingestion of the meds. But this does not affect my life.
I travel within the US with an RV and twice a year I travel internationally. The antibiotics have not affect my travel. Just need to plan ahead yo have prescriptions.
I still work out and really I feel stronger since I have been on the antibiotics. Also my sputum seems to be less. It’s definitely a long journey and I’m ready for all the up and downs of it.
I have just received my first negative sputum. It’s a small victory but it felt soo good!

Wow, that's nice to hear! The more I read of personal experiences, the more confusing the treatment decision seems to me. I've had several different pulmonologists (due to them moving on, retiring, or to my moving away from MN to CO), all of whom have discouraged treatment, until recently. I can't think of any one of them who would have supported treatment when I was asymptomatic. I've asked my current doc why keep waiting until I'm coughing up blood or having night sweats, losing weight, etc. since the damage being done is permanent. He always says I'm "doing great" and the treatment is highly toxic , and is therefore ill-advised. Now, with a CT scan indicating worsening (not the first time), he's suggesting bronchoscopy to see if the bacteria show up without culturing. I.e., if it's evident without culturing, that indicates increasing infection. My annual PFTs always say "low normal" for my age, my blood O2 is always %94 or so (and I live at 5,000ft.) I am so encouraged by stories like yours and others' who do well with treatment, and so frightened by the experiences of others who suffer. If it's definitely worse, I'll probably opt for treatment, but will first get second opinion.

Thank you Sue! Very interesting, I do hope you continue to keep MAC at bay. I find aerobika hard to use, I get very tired. Am supposed to do 100 times a day, I only manage 30. Then I’m puffed and I feel vibration sensation in eyes, very weird. I use to be able to cough and huff up small amounts most afternoons. Since starting meds 2 months ago, nothing comes up. I was wondering if saline nebs might help. I also have bronchiectasis. The only time I cough copious amounts is when I have an infection of sorts. Anyway, thanks for sharing, I will have to persevere with airway clearance.

Are you doing daily airway clearance with saline? This was really a game changer for many of us - when I started my journey in 2018, it was barely known in the US, though a lot of people used .9% or 3% saline.
Now, I believe more and more people are encouraged to try this first, and resort to antibiotics if it doesn't either improve or level-off lung and health changes.

Remember - airway clearance can be accomplished a lot of different ways - I am able to clear most of the time with exercise followed by active breathing/huff coughing.

I had never heard of saline airway clearance or huff coughing until joining this group a few days ago. (I was dx'd in January, 2012.) Exercise often causes some productive coughing afterwards, sometimes a lot; I guess that's been my airway clearance program.

For me, it's the best airway clearance - it fits in my life, and I get my heartrate up and steps in - triple play! I just have to remind my Yoga group when I step away to cough that I'm not going to infect them with anything. I also find a lot of bending/reaching in the house or garden can have the same effect.

Here is a great (but long) Webinar on airway clearance and why, from one of the bronchectasis experts.: