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