My name is Clayton, and I am a 23-year-old paramedic living in Alberta. In March of 2020 I lost my father, Pete Rafuse, to PKD. PKD is an illness my father lived with for the majority of his life without issue. His doctor’s care plan was to monitor and see what time would bring.

The following story is an emotional one, but I encourage you join me in my recounting of my dad's PKD experience - including the happy times, the sad times, and what he and I both learned along the way. I hope this story can act as a resource for those with PKD, their families, and those who like me - someone who's lost a loved-one to PKD.

My dad lived an exciting and fun-filled life. His career and lifestyle were that of a cowboy, and he worked at a variety of ranches and feedlots throughout Western Canada. Thirty years of his life were spent on horseback, roping, and treating cattle in a variety of terrain and weather conditions. With an incredible skill of telling stories often filled with side-busting humor, the majority of people who knew and loved Pete would retell his stories to their own friends.

Once my father reached his early 50s, his PKD had progressed, leaving him with minimal kidney function. In addition to this, he also developed other chronic medical issues. This brought his passion of riding horses and cowboying to a dramatic halt.

My dad started dialysis, and the next three years of his life began. He made the best of it, always smiling to the nurses and treating the doctors and staff with the upmost respect. However, this was a incredibly drastic change to his life, and mine. He went on dialysis "runs" often, and would dialyze for 4+ hours because of his larger size. Sitting in a chair this long, three times a week, is exhausting, and comes with many struggles like boredom and discomfort.

Being his only son, we were incredibly close, and considered ourselves as best friends. We spent up to an hour a day on the phone, or in person grabbing breakfast. Many a winter's day was spent out on the lake ice fishing, and many a summer's day was spent fly fishing at a close friend's acreage.

Dialysis extended my dad's life and gave us many extra years we would not have had without it. I have many great memories because of this.

Everyone's journey with PKD is different, and I don’t want you to get discouraged by this story.

In March of 2020, my dad at the age of 56 suffered a major medical event in relation to his PKD, after surgery and an ICU admission. My father made the decision, in consultation with his doctor, to stop his dialysis runs, and was moved to hospice care. During his final days, we spent almost every moment together, swapping stories and laughing. He was also able to see and say goodbye to many of his close friends and family.

My dad wanted people to learn more about PKD, and the drastic change it had had on his life. He was very grateful for everything people did for him, but it was hard for us to look past the hardships he endured because of PKD.

I encourage you to do your own research on PKD, especially if it is in your family.  And if you lost a family member, tell your story. I found that writing this all down was a therapy of sorts, and I hope you can relate to what I have said, and it can help you through your grief.

A day does not pass where I don’t think of him, but more and more each day my memories of the hard times get replaced with the happy memories (such as swimming together when I was young, or grabbing A&W for breakfast together on my first morning off shift).

Thank you for reading my story. I hope that within my lifetime we can reduce the suffering from PKD for future generations.

Further Reading

Clayton updated his story in June 2024; you can find that blog here.

When caring for a loved one, it's easy to forget to take care of yourself. Check out The Ontario Caregiver Organization's webinars, which highlight the importance of caring for ourselves while caring for others.

For information about PKD screening and testing for family members of people with PKD, click here.

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