A few weeks back, J. and I joined our dear friend, D., on the Transplant Trot in support of, well, you know, organ and tissue transplants. D., my Sister in Liver Disorders, had assembled a group of friends and family to trot with her. It was emotional considering that D. would not have been there to walk with us if not for her new liver.
I didn’t realize before I knew D. how complicated it is to live with someone else’s organ. Transplant recipients require life-long medical care. I’ve learned that organ transplant is not akin to replacing the radiator in your car. In many ways, D.’s journey has been a lot more challenging than mine, although we’re not competing on this one. Earlier this week, D. did concede that I may be beating her on the specialist front of late.
But I’ve never told D. that there’s one thing that comes with a transplant, in addition to not dying, that makes me envious: D. has a transplant nurse coordinator. This knowledgeable nurse oversees her care and ensures all her medical needs are being met. D. can contact her nurse with any concerns and the nurse will help her sort things out.
Don’t get me wrong, D., I’m glad you have the support you need. You’ve been through so much and deserve anything that can make your path easier. I just want to join your club, without the transplant part. Is that too much to ask? Haven’t I earned a cancer nurse coordinator? Someone I can call if I’m feeling unwell, someone who can help monitor and direct my care? Have I not jumped through enough hoops to merit such a person on my team?
Come to think of it, what I really need is a social convener, someone with an official title to say: “I’m sorry, Dr. Specialist, my patient can’t make that appointment because she has to walk her dog/go to yoga/get her hair cut/meet her friend for lunch. We will have to find another time.” I’m sure if I were to say these things, I’d be laughed off the phone, but coming from someone with an official title?
Failing that, I’ll have to start integrating my social life with my full-time job as a patient. Want to go for coffee? Sure, grab a few cups to go and I’ll meet you at the doctor’s office at 10 a.m. We’ll have plenty of time to visit. Do I have to miss yoga yet again? Well, who says I can’t practice Warrior 3 while I wait for the doctor? Might keep the stress of waiting at bay. (Turns out yesterday’s specialist was delayed in the ICU. It’s so inconvenient when patients are sicker than me.)
And then there’s the dog. Poor Jelly has gotten especially short shrift this past while. Maybe I’ll start taking her to appointments with me. She loves a social outing. I can just imagine her cuddling with my fellow waiting patients, howling as she races around the receptionist’s desk, and stealing Cheerios from unsuspecting infants. And if the wait is too long, well, I’m sorry for the puddle she left by your feet. Maybe you could take me in a bit sooner next time.