The Nervous System No One Talks About Post Transplant
In my years post transplant, I’ve been on a quest to heal my body, and my mind.
No one ever explained the landscape of transplant to me before I underwent major surgery. Sure, I knew the surgical procedure, I knew about the medications I’d be on for the rest of my life, and I signed the consent forms. But no one told me how I’d feel in my body, or the way this transplant would shape my nervous system. I wonder, if we told patients, if they’d be so eager to consent.
Based on what I know, the answer is probably yes. Organ transplantation isn’t a fun side quest, and the people who come to it usually do so as a last ditch effort. Still, it feels like a major disservice to not prepare patients for what comes next, and for the intense nervous system responses that emerge.
Post transplant, I collected a list of new diagnoses. I was told of all the symptoms, and the cascade of complications, and how one diagnosis usually leads to more. I wasn’t told what I believe now to be true: everything that emerged in my body post transplant was a result of the transplant and the wide reaching effects it had on my body, and my nervous system. .
My surgeons, doctors and nurses are brilliant humans. They know so much about the medical side of transplantation and I feel lucky to have them on my team. And no one told me about the effects on my nervous system, the trauma that would reshape my body, and how the normal they all told me to return to didn’t actually exist. My entire life had been flipped upside down by transplant. (And I’m not saying that as a strictly negative thing. I love my post transplant life)
My scar spreads across my entire abdomen, and this is only the scar from my transplant surgeries. Nerves were severed, body parts rerouted and reconnected. And with the slicing of nerves - necessary for the arrival of my new organ - my neuromap went dark. My ability to feel myself in my body got disconnected.
My doctors got me through the surgery alive. They made sure I didn’t die. That was their job. They manage my immunosuppression and prevented rejection and I’m here today because of it. And I woke up completely disconnected from my body, in pain, with my nervous system in a state of panic not only from literally being sliced into multiple times but no longer being able to locate myself or accurately convey information, and I was told to be grateful. Because I wasn’t dead, right? That’s become the gold standard for transplant patients. And it’s a massive failure.
When I started vocalizing something wasn’t right, I was told it was mental health. I was just anxious (I wasn’t)
Medical care isn’t holistic, and there were no resources to give me to integrate the mind and the body.
Medicine did everything right, and I was still failed. (What a statement, eh?)
So when I talk to people who say they just want life to go back to normal after transplant - they’re missing a huge invitation moment. There is no back (and someone probably should have told you that before so I’m telling you now) but there is a way to move towards more body coherence.
Transplant surgery will mess with your nervous system. This is a fact they don’t tell you. But it’s not a life sentence. And it’s not the end of the story.
