Here is what happened to me over the past 6 months:
After a year of treatment for MAC, I was not only still getting positive sputum cultures, but the repeat CT scan showed more evidence of the infection than the first. And I still FELT lousy – no energy, still losing weight, intermittent cough and chest tightness. My pulmonologist wanted to "stay the course" and "be patient" – easy for him to say – he wasn't living life on the sidelines. So he reluctantly offered to refer me to the infectious disease doc in our large clinical system. That guy changed one med, upped everything to daily, and was monitoring my bloodwork, eyes and hearing closely. But, when it came to questions about bronchiestasis and asthma, he said "I'm not the guy – you need to see your pulmonologist." Back to Dr A, who seemed impatient with my questions that day. At the end of the appointment he said, "Well now that you have Dr B, I don't need to see you any more." Wow! Ow!
For the next several months, I asked my questions here, or of my primary practitioner. I got good answers, but felt like I was adrift. Last week I saw my primary in the same practice, who has been with me for over 20 years, she asked what was going on and I explained. She was…astonished? And adamant that living with asthma, bronch & mac required oversight by a pulmonologist, so she and the ID doc found me a new one.
Like many things in life, this little adventure may turn out to be a blessing in disguise. I saw Dr C yesterday. She was much easier to talk to, listened, explained and was very accepting of my saline nebs as the ongoing treatment, with my Xopenex as backup for flares. Dr A had dismissed the saline as both unnecessary and probably ineffective, didn't want to hear or read about it. She also listened to my concerns about Breo (robs me of my voice!) and willing to step down to a milder med and "see how it goes."
Have you ever been "fired" by your doctor? What did you do?