Voices of PKD: Marie-Pierre Schryburt, Ottawa ON
The last time I shared part of my ARPKD journey on this platform was back in July 2020. Since then, so much has changed in my life – but mostly my journey has taken great turns.
Firstly, in August of 2020 I officially transferred from the Children’s Hospital of Eastern Ontario (CHEO) to The Ottawa Hospital – Riverside Campus, also known as the adult hospital. I remember my last appointment at CHEO; my team and I celebrated, and we even held a mini graduation in the nephrology clinic. Tears were shed, pictures taken, and the sense of losing many family members was felt all around the room.
I was quite nervous transitioning from a kid hospital to an adult one, and I will be honest – it was weird. The very first thing I noticed was the lack of bright, fun colours at Riverside. I was so used to the walls being red, blue, green, and yellow. I was used to animal footprints on the wall to direct you from clinic to clinic. Riverside was just grey – very “meh,” compared to CHEO. However, a pro tip: if you miss getting stickers after bloodwork even as an adult, you can nicely ask your lab technician to draw a smiley face on your bandage. Might not be a sticker, but it does bring the mood up. J
However, the biggest challenge was that my ARPKD diagnosis was catching up to me. In the summer of 2022, my kidneys were in their final stage of life, meaning for the first time in my life I actually started feeling the symptoms of ARPKD. I knew my family was getting concerned, and some of my relatives were so concerned for me that they were getting tested, to see if they could potentially match with me and donate their kidney.
In October of 2022, I got a phone call at work, stating that my cousin and I had officially matched, and that I was to receive her kidney in a month! I have never been more speechless in my life, than after that phone call. I remember leaving my desk, calling my cousin, and just overall freaking out.
I kept thinking of all the things I needed to organize before my transplant surgery. At the time, I was a full-time student in university – in my midterm session – and working part-time. I quickly got everything in order, and was constantly in the hospital for some extra testing (so many bloodwork tests!), and overall check-ups.
Then the date came, and on November 24, 2022, I received a kidney transplant. It was a wild experience, and one I will never forget. From being wheeled into the waiting room, to waiting in what my brother and I refer to as “the cold hallway,” to reaching the operating room, then all the way back to waking up, confused and dazed, surrounded by medical professionals.
I won’t lie, the recovery road wasn’t smooth. Simply leaving the bed to go on a mini walk seemed like an impossible task, due to the incision. You are prescribed new medications that could have potential side effects, and are followed like a hawk by the post-transplant nephrology team.
Now in July 2023, I have fully recovered from my transplant, and I am back in school finishing my bachelor’s degree. I am working part-time, and have started volunteering for the PKD Foundation of Canada. J I am excited to see what the future holds, and what other unique adventures my weird kidneys will take me on.
Marie-Pierre first shared her Voices of PKD story with us in 2020. You can read that story here.