It was fitting that this beautiful scene of the pink and orange clouds perfectly reflected in the dead calm harbour was what greeted me as I walked along a path in the park one evening a few weeks ago. It was exactly how I felt – dead calm, content with the peacefulness of the moment, but anxious about the coming darkness.
I have PKD (Polycystic Kidney Disease). A few days earlier, I had been told that I would be on dialysis within a year to a year and a half. I was brave in the first few moments, after the initial sting. I could feel a tug at the back of my throat, and to prevent myself from crying I cracked a few jokes. My specialist doctor politely smiled and nodded. He’s been in this spot before I am sure, so knew when to pause, smile, nod, pause and then continue describing and explaining physical and medical processes both before and when I start dialysis.
Most of this information was not new to me. The PKD I have is hereditary. I had been through some of this with my mother. She was set to be on peritoneal dialysis, but received a transplant before she came home from the hospital. That was 35 years ago. It was the week of her 40th birthday, July 1982. I was just 17 years old. I remember trips with my dad back and forth to the hospital in Halifax until one day we could bring her home. We were lucky. She enjoyed 18 more years of a fairly normal, healthy life. She got to see me graduate, get married and have her first and only grandchild whom she adored and loved spending time with until she died in 2000 from cancer.
I have known my whole life what was coming; that one day I would face being hooked up to some form of dialysis apparatus. I have been monitored biannually for the past 25 years, so the deterioration of my kidney function is not a surprise. But it is. I don’t feel sick. I have no symptoms. I just have these 3-times-normal-sized kidneys that are working less every day.
So that brings me to today. I have lots of decisions, plans and things I want to do before the ugly stuff. Dialysis is not a death sentence, but it will certainly mean big changes to how I and my family live and do things. I want to document my journey. I want to give myself freedom to create, write and share what is important to me, what makes me happy and what lies ahead in my future. Don’t mind if I do.
“I can be changed by what happens to me.
But I refuse to be reduced by it.”
– Maya Angelou