My Transplant Team at SickKids are badass and, dare I say, superhuman.
As you may, or may not, be able to imagine my body’s responses to being opened up, replacing a major organ, and then being closed up again are non-standard. I doubt anyone’s liver tranplant is without its twists and turns, but from my perspective I would put money down on my not being in the straight forward category.
While being darn good at managing the pieces of a transplant puzzle, my Team has had a whole new eye-opening experience in complex body responses. Being a non-speaking autistic with acute sensitivities and a very high pain threshold means that the enigma of me is taking some time to get sorted.
Let’s look at a couple of examples of how we pulled apart my responses to get to the bottom of what was happening with me.
Trigger warning! This may get graphic but is the only way to tell the story in a way that may help others get that what you see and hear may not be accurate to what is actually going on. Also, please note that there is no way for me capture all that was happening… I will give you a taste.
My transplant surgery took about 11-12 hours. Joyfully I got through with no complications and am grateful for the skills of my surgical team.
Being under anaesthetic for that long means your bowels turn off. So before you can have solid food again, they must be awake, witnessed by gas and a bowel movement. This process is also hindered by pain medication slowing things down down there.
So, enough backstory. One of my old stim things when overwhelmed was to say “potty” and go hide in the washroom. When I was first in ICU I said this a few times, a comode was brought to bedside, and I would get on it and do nothing. When we were moved to the floor {our room for the next few weeks} we learned that a BM would not be expected that soon, yet my body kept that up. I also in a flash managed to remove my catheter, and later the IV lines in my neck and upper arm. My tricky tricky body was in fight or flight despite knowing I needed those lines for my recovery.
So long story short, how my body looks when in pain is miles different from someone who is able to discern and speak about the pain. Many questions and ratings on a scale from 1-10 later, we could differentiate incision pain from gas from constipation level and adjust medications accordingly and getting things moving. I am grateful to the amazing nursing staff who helped us get to the bottom of what was happening.
Similarly, but different, sorting out my wean from morphine was quite a puzzle. While that stuff is great when needed, I am not a fan of it. Getting my pain management requirements sorted out took time and that extra time gave my body a little too much to be able to come down off it quickly and easily. When pain was manageable, withdrawal symptoms became my nemesis. I could not initiate communication to let Mom know when the symptoms began to develop so I would be in full sweats and internal shakes before Mom could alert the nurse for a breakthrough dose {a small amount to help with withdrawal symptoms}. Loving Mom and her whiteboard spreadsheet helped us track and see everything with pain and withdrawal scales. It allowed her to know when to start asking me about withdrawal symptoms as we extended my time between morphine doses so we could get ahead of things versus being reactive.
Let’s just say that creativity, teamwork, graciousness with ourselves and the staff, and knowing that we would figure things out were guiding principles through those times.
I am grateful for the playful, the light-hearted, the tenacious, the curious and the skilled staff at SickKids. I am also greatly appreciative of my Mom’s ability to be gracious, creative, and come up with questions, scales, and charts to guide the whole team and empower me to sort through the roller coaster with them. My Mom is love in action.
I hope that gives you a taste of the complex nature of my post-surgical care where my access to communication let me drive my own care and supported my medical team with very specific details needed for that care to be effective.
Love and caring,
Jordyn
Photo: 22-June-2021 12 days post transplant
