The anger train continues to roll after Saturday’s journey down memory lane of my major medical blunders. And, as that steam engine doesn’t want to return to the station, I thought I’d try to reverse its course with a positive story.
During my last hospitalization five months ago, my CF team told me that I had to quit Cayston because my bacteria were showing intermediate resistance to it. Argh. Cayston? NOOOOOO. The study drug made a giant, positive difference in my life over the past few years. But the team told me to stop it, so I did. They also informed me that I needed two clean samples without any resistance to the drug before restarting it.
I could have sat back and let those tests come naturally in the course of exacerbations, but I didn’t. I requested new samples when I had opportunities, like the hospitalization for my heart troubles when I argued with the hospital doc who didn’t see the need to collect one, as I wasn’t in for an exacerbation, and another appointment when I wasn’t due for a sputum sample.
I pressed for the tests and with luck got the results I wanted sooner rather than later, which allowed me to restart Cayston.
Now here’s why it paid off for me.
A month ago, I was showing classic signs of an exacerbation with increased coughing and mucus. So, I restarted Cayston. It was touch and go for the first 10 days with some streaking and not feeling well, but I turned the corner. And after four weeks, my lung pollution is almost where it is after a hospitalization. Amazing luck. Cayston worked almost as well as IVs and saved me from a trip to hell.
And though this is a simple example, it demonstrates that proactive steps can keep CF at bay – sometimes. Had I sat back and accepted my circumstances and not suggested medical tests when chances presented themselves, I wouldn’t be writing this post – I’d be in the hospital. That’s not to say that CF won’t put me in the hospital tomorrow or next week. As we all know, it can. Still, it’s nice once in a while to escape its clutches by making the right decisions.
Though a small victory in a long war, it still feels good – fleeting – but good.