Marie-Pierre Schryburt, Ottawa ON
In 1998, my mother received the news that would change her life forever. Her baby boy had autosomal recessive polycystic kidney disease (ARPKD). This disease would affect his kidney function and cause him to require dialysis or a kidney transplant in the future. However the future wasn’t promised. In July 2002, my mother gave birth to me, a baby girl, who was also diagnosed with ARPKD. This disease would affect my life in ways I would never imagine as well.
Having my older brother by my side made everything better. We had the same appointments and created nicknames for our doctors. When we had procedures on the same day we would always wake up next to each other. As you can imagine, it wasn’t always sunshine and rainbows. We were together when we had bad news and when tests came back not looking so good.
Living with ARPKD makes you different than the rest. You try to live your life as normal as you can, but you have your own special little things to do. I take medication every day as well as getting an injection once every two weeks. I visit the Children’s Hospital of Eastern Ontario (CHEO) at least once a month to check in with the Nephrology team. In addition, I can’t participate in Phys-Ed class at school, at the risk of getting hit in the stomach. ARPKD can cause many health issues, such as an enlarged spleen- so getting hit in the stomach could cause me a great deal of trouble. I have also been told not to play certain sports and to be careful playing outside.
Living with ARPKD means that you need to avoid eating certain foods, even if they are your favourite. Some of these foods I have to limit include potatoes, oranges, tomatoes, bananas, chocolate, whole wheat, any kind of grapefruits, strawberries, chicken and more.
My brother, who is now 21, got his kidney transplant last year and is doing better than ever. His kidney function has never been so good; He is healthy and doing great. I on the other hand, am currently being worked up with testing to slowly ready myself for a kidney transplant in the future.
Even if ARPKD can cause pain in my life, I wouldn’t change anything. I love the life experiences my weird kidneys have given me!