I wasn’t really nervous about this appointment and didn’t expect anything to happen, yet somehow, when I was in the waiting room I suddenly did start to feel pretty anxious. Although I am finally on the list, I could also get taken off the list, should I develop any medical issues that might prevent the transplant from being successful. I was actually quite surprised that I suddenly felt anxious. Ryan was not with me for this appointment. Indeed, it was the first transplant appointment I’ve ever done without someone with me. Even if there isn’t much for Ryan to “do” at these appointments, when you’re undergoing stressful medical stuff, it is so helpful just to have someone to visit with in between tests and appointments to keep your mind from wandering to places it should best not visit.
I’m quite used to managing my medical stuff on my own and usually don’t take anyone to appointments. But, having watched so many friends go through the process, I know how important the support system is for a successful transplant. It is a lot to learn and it is important that the people around me are as in the loop about transplant as I am. Also, I knew that as a single adult, my support system would likely get more scrutiny than if I were married. I wanted to make the point that it was real and capable system – not just a few names I was jotting down to check off a box somewhere.
Results? Happily, there are no changes since my last appointment. I even did a tad better on the six-minute walk. The distance was almost exactly the same, but my oxygen levels were a tad better. I have no idea why, but it doesn’t much matter.
To calm myself I tell myself that at this point, the tests don’t really matter much. As long as I am listed, status quo means status quo, and worsening numbers only mean my lung allocation score goes up. I am not sure; however, if that coping mechanism will hold should there be a big change. You just never really know until it happens.