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Life while being treated

MAC & Bronchiectasis | Last Active: 23 hours ago | Replies (44)

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@sueinmn

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.

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Replies to "Well, I have explained the progress before, but cannot find the post. In December 2019, my..."

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

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?