Transplant Pros and Cons
I said recently I think transplantation is one of the only disease areas that exist where the patient endures living hell and is expected to only feel gratitude.
A bold statement? Maybe. But one I stand behind.
I was referencing tacrolimus (one of the most common immunosuppression agents used in organ transplants) and the list of most common side effects was over 2 pages long. Not the comprehensive list of side effects, just the most common. And the list boasted everything from kidney failure to hallucinations, memory loss to tremors to suicidal ideation. I don’t know a single transplant patient who doesn’t have multiple side effects that were among those listed.
I work in transplant patient care, and the amount of times I’ve been apart of conversations where the story stops once the actual organ has been transplanted. Transplant isn’t a cure, it’s a common phrase that gets thrown around, but no one talks about the life that continues after the transplant occurs. While some patients have “easy” transplant stories of finding a match and surgery going according to plan and recovery, there are just as many of us that don’t. I’m one of the ones that had a very complicated journey from beginning to current (I would say end but the complications haven’t stopped coming, and most likely won’t until I die). And I’ve been told many times to just be grateful, at least I’m alive, to look on the bright side. Someone tell me where else it’s acceptable to talk to someone like that?
I read an article a little while ago that’s stuck with me ever since, and it discusses the translation of the word suicide. There is a translation of the word where it means call of the void, or call of death. Mental health is rarely discussed in connection with transplant, and I wonder why, as anyone who has recieved a transplant is living extrordinarily close to death. That feeling doesn’t just go away when you recieve an organ. And when I say I know what it feels like to have death call my name, I am told I just need to be more grateful.
When I share my story, people want the highlight reel. They want the sparkling success story on the other side, something they can feel good about. People want to know that if they donate their loved one’s organs when they pass, someone will recieve a beautiful new life and everything will be fantastic. Nobody wants the reality. The reality is much more complex and jaded than anyone would like to believe. At least for some of us. At least for me.
Living with a transplant has taught me more about life and death, both brutal and beautiful, love and loss, boundaries and connection than I ever imagined possible. It has been one of the greatest blessings, and the hardest battles, of my life. And it is very important when I tell my story that both those things are included.
I want to shatter any illusion you have about transplantation just being this beautiful, selfless thing. It’s also political, it’s exhausting, it’s draining, it’s hard as hell, it’s moments of intense survivor’s guilt and not feeling worthy of being alive, of feeling like I failed in a never ending loop. It can be both those things, and it’s always been all of those things, and the richness in it comes when we allow it to be all of those things.
Tomorrow, I’m hosting an ask me anything event on transplantlyfe.com on the pros and cons of organ donation, sharing the heartbreaking and beautiful moments of my own transplant story and why it’s always been both/and. I hope in sharing the reality of my transplant journey, it can shed light on the situation as a whole, and let people who don’t have a picturesque story know they aren’t alone. We don’t need to be more grateful. We just need to be honest.
I hope my honesty inspires some of your own. Tell the truth about what happened, about what matters. And come ask me anything. I can’t wait to see you there
