I am a rule follower. Always have been, always will be. For as long as I can remember, I've been the teacher's pet and the girl everyone trusted to get things done. It's no surprise, then, that when it comes to my CF medications, I routinely follow my treatment regimen without skipping a beat. However, one medication came along that challenged this unwavering commitment.
A couple of years ago, I started a new device for inhaled antibiotics. I was already on inhaled medications that took several minutes to complete each day, so I was excited to try something more portable -- especially since my care team and I decided that I would use it twice a day, every other month.
Every time I inhaled the antibiotics with the new device, however, I would cough incessantly. My husband would comment, jokingly telling me that it sounded like I was “dying.” I tried taking a sip of water between inhalations, but I could barely breathe in the medication before coughing.
Perhaps even more importantly, however, I found that taking the antibiotic every other month actually made it more difficult for me to remember. You see, I rely on organization to make sure I take my medications daily.
Each medication has its place. But, when you don't take a medication for a month, it doesn't really have a place in my routine. Therefore, the new inhaled antibiotic took a backseat to the rest of my treatment regimen. Eventually, I started to put off the medication for days, even weeks, at a time. Yet, I still went to my CF care clinic appointments without saying a word for quite some time.
It took me months before I was able to bring up the issue with my care team. I was so worried about “following the rules” that I would have rather dealt with the problem on my own, unsuccessfully, than risk getting in “trouble” with my doctor.
At my most recent appointment, however, I finally gathered up enough courage to bring it up. I waited with bated breath for my doctor to get upset with me.
But, to my surprise, he replied patiently and kindly, and asked me to always tell him when a medication or treatment isn't working for me. We spent the next few minutes together going over different solutions, and finally, we agreed on one that worked better for me.
Afterward, I felt like a weight had been lifted off my shoulders! Not only was I honest, but now I wouldn't have to worry about being “noncompliant” or taking a medication that made me sound like I was “dying,” as my husband would say.
I have come to realize that the members of my care team are not just medical professionals here to help me with my CF care; they're actual human beings who understand the realities of living with CF, if you let them. I am so thankful for my caring team who understands that I have to incorporate many treatments into my day. I know that they are always on my side, and I will continue to be honest with them from now on.
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