Once I returned home from the hospital, my primary concern was making sure I took my pills at the right time, in the right order, and didn't miss any doses, whether due to simply forgetting, or not having enough pills on hand. The latter issue was a matter of long term planning, and I knew if I regularized when I refilled my pills, reordering them in a timely manner to ensure I never ran out would be no trouble. To make sure I didn't just up and forget to take my pills, I set timers on my phone. Six of them, to be exact-- at six, seven, and nine a.m., and then noon, six, and nine p.m. These timers are an absolutely crucial part of my daily care, and I can't imagine how I would be able to take my meds at the appointed time without them.
Of course, on occasion, I've had a timer go off when I don't have my pills with me. These situations frustrate me, but are my own fault. Keeping an eye on the clock before leaving the house is an important addition to the life of a transplanted person. If the trip, appointment, errand, whatever might even possibly overlap one of the pill alarms, the pills need to come along for the ride.
The doctors on my transplant care team told me that people who have cystic fibrosis usually do well with the medication aspect of post-transplant life, because we have become accustomed to a life of taking medicine. The change is in what and when we take the meds, and that is much less jarring than suddenly having so many personal medical responsibilities, which is the reality for many individuals who receive a donated organ.
Right from the start, everything related to my new regimen went really well. In fact, the only challenge I have dealt with regarding my medicine was completely psychological in nature. When the insurance company decided I'd been on the brand name version of a crucial anti-rejection medicine, tacrolimus, called Prograf, long enough. It was time, they said, to switch to the generic option. I really struggled with this. At this point, I was very used to my routine. It was keeping me healthy! Why must it change? Now, in truth, all that was changing was the color of those particular pills, because my doctors assured me there would be no difference in how the pills worked. But they were changing color! Every time I took them, I would side-eye them, worried they were inferior or actually filled with sand or something. This was, of course, ludicrous. For the first several weeks after the switch, I reminded myself that I'm not a worrier by nature, and I do not make a habit of questioning the medical science in which my doctors believe.
What ended up happening? Nothing. These pills, in all their different-colored glory, work just the same as their brand name counterpart. Once I quit thinking about it, this non-issue became just that. And I know now that I should not judge my pills by their color, but by the content of their capsules. As long as the blood work comes back looking good, I'll take whatever I'm told, whenever I'm told, regardless of hue or shade.
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