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Expect the unexpected: before, during and after my liver transplant journey. You can’t make this up…
“January 13, 2025, I got up, weighed myself, ate oatmeal.” This was my last journal entry. Too tired to be inspired.
The day before, Sunday January 12, 2025 I spent most of the day in the ER. I had called 911 again, I was unable to breathe. I prepared my children for the ambulance, it was not a new occurence. One pissy EMS guy refused to start treating me until my beloved Beau was secured, the other 2 paramedics were fine with Beau. Yes, put your animals away when you call 911. Our Beau was not having it. He busted through 2 doors to get to me. Never leaves my side. No chivalrous man ever did that.
Fast forward to the ER, it took some doing but eventually 4000ml was drained from my right lung, again. As it happened, my dear friend and priest came to see me in the ER. I could see a worrisome, almost care worn face of love and heart anguish. I almost wanted her to go because I didn’t want her to feel bad. We prayed. I asked her to check in on my children.
No One Was Coming
Many times living with a terminal diagnosis, the reality is that no one was coming to save me. No one was coming to help. I did so much on my own, every fucking day. I refused to go down the way I was. That was utter bullshit what had transpired.
I called, emailed and begged the world, my specialist at the time, my PMD, my other specialist for help for days, weeks, months, years. This was my last chance. FYI don’t be near death around holidays, people go on vacation and offices are closed. There was nothing left I could do.
The Call
January 13, 2025 was of the heaviest, seemingly of my last days on earth. I powered through to drive my daughter to a 1pm appointment. I was screaming inside my head in that meeting, mask on my face, claustrophobic and beginning to hyperventilate. The fluid was already filling up my lung again. I had to get out of that room.
I went to my car, to find my phone on the seat. I missed a call. Twice. Called the VM. Called the number back. That “2 o’clock phone call” from the hospital meant life.
Next call was to my sister, I screamed to convince her of the truth of the phone call. I was spiralling with tasks to do. I jumped into crisis mode as a nurse always does in times like this. Uber focused, adrenaline, no time for error, doing it all with a sense of urgency, life and death for sure. I was my own crash cart and code team.
Leaving Home
As we left for Toronto, I made sure all was organized in our home for my children. I again explained what was happening to my daughter, then the last thing I did here was drive my exhausted ass to hug my son at work. I was not confident I would see them again.
I hugged Beau and hit the highway with my sister at the wheel. I was wrapping my head around what was happening. Yes, the reality is that we did manage to laugh inappropriately, get to the hospital and hope for the best. I would not believe it until it happened. That was hard to sit with.
When Transplant Doesn’t Happen
What I didn’t thoroughly consider nor was prepared for is the heartbreak that happens when transplant doesn’t happen as planned. I know people that got to the hospital like I did and seemingly, at the last minute, the transplant was cancelled and not rebooked. No liver for you. Back to the waiting list.
It is complete purgatory, at times a waking hell, being on a transplant waiting list. I tried endlessly to find a live living donor and came up empty-handed .
Pre-Op Limbo
The reality for me of being in the preop holding area for 3 1/2 hours took every fibre of faith and patience I had. It was the worst mind-fuck. I prayed, and told myself that God would not bring me this far to turn me away now. My sense of humour was not that evolved.
However, after I obtained as much information as I could, gleaning answers I knew how to elicit, my transplant was not going to happen on January 14 starting around 2 PM as planned. “It will happen perhaps in 6-12 hours…” Excuse me?! A surgeon and team that has been at it with a “complicated case”, then to do me?! Oh man that’s a long shift, a big ask, I’m sure there is a contingency plan.
“Your liver is being optimized.” I had only a vague idea what that meant. I was not informed directly until much later so my wheels were spinning for hours.
I was returned to the unit and told not to eat or drink because it will happen later on this evening. Long story short it was not happening at all that day and there was no confirmation on when it was happening.
I was bereft, but I maintained hope and paced and fussed and tried to stay calm, while crying and dying inside…to be continued.
