June 07, 2024

Clayton Rafuse, AB | Voices of PKD

Part of the variety of experiences within the PKD community is the experience of caregivers like Clayton Rafuse. His father had PKD, and Clayton became his father's principal caregiver as his father neared the end of his life. Clayton first shared his story with us in 2021, and recently he felt moved to share an update about his own PKD journey, with the hope that his story will resonate with other children of people with PKD.

My name is Clayton Rafuse, and I first shared my story with the PKD community in August 2021. My father Pete had PKD, and passed away in March of 2020.

Awareness

My dad's journey with PKD has inspired me to become an advocate for PKD awareness, and since 2021 that desire has grown, especially because another extended family member has recently been diagnosed with PKD. I encourage my cousins to get tested by ultrasound, as I do myself every year.

So far I haven't been diagnosed with PKD, but I believe that it's important to continue to get tested, so that if cysts are found, I can be connected with a nephrologist who can be on top of things.

I respect the decision of those who don't want to get tested, and don't want to know. It's a very personal choice that each of us has to make for ourselves.

Coping with Unknowns

How do you cope with not knowing if you have PKD? It can be scary to think about, when you don't know what your future will look like.

I try to counter those thoughts with positive thoughts. If I get a negative thought, I put my thoughts on what's good about the here and now, rather than worrying about the future. I journal, and I would encourage people to journal their thoughts.

I also try to be in the best possible health, whether or not I end up having PKD. I have a yearly physical, and while I have high blood pressure, I try to do things that help control it.

Something that I've started doing now is trying to watch what I eat, and trying to go for a walk every day. Nothing extreme, just around the block, but I want to continue to increase my physical activity.

Dad's Dialysis

As my father's disease progressed and his kidneys failed, he had to go on dialysis. He was fortunate enough to be able to go to a dialysis clinic in a hospital, although it was a 45-minute drive each way.

He had some issues with his fistula, but the dialysis experience was not all negative. The staff at the dialysis clinic was very caring, and made the whole process very welcoming. I would visit Dad while he had dialysis, and it was good to spend that time with him.

One of the most difficult things for my dad was having to switch over to a completely different lifestyle once his dialysis started.

Mental Health

Since my dad has passed away, I've become more aware of how mental health and a chronic illness like PKD are intertwined.

PKD affected my father mentally - especially after he started dialysis - and he struggled with depression. Losing his identity as a cowboy was hard for him, and he never really got over that.

After he stopped working, he didn't want to talk about, or associate with, anything to do with his work life. For example, he stopped wearing his cowboy hat, because the cowboy hat had a big meaning for him.

He didn't want to talk about cowboy work like branding, because it reminded him of what he wasn't able to do anymore.

He had trouble sleeping, but napped all day. He lost his appetite.

At the time, I did everything I could for him, but his mental health also had a major impact on me. I was his only son, and since he had distanced himself from his past life, I was one of his only confidants.

My dad stopped trusting others, and I took on a kind of counselling role. That's difficult for a family member. Looking back, I wish I had reached out for help, because I know that I was getting depressed myself. My family noticed that I was taking on too much.

My father's kidney failure seemed to drag on forever, with no end in sight. We took things day by day. It was quite difficult on me.

Finding Help

After my dad died, I was able to see a grief counsellor through his hospice, and that helped me to move on from the grief and caretaking that I'd had to do. It's just as important to take care of yourself as your loved one.

They told me that grief doesn't have a timeline; it's something that you're going to deal with for the rest of your life. During the initial stages it's heavy, but it gets lighter.

It's been four years now since my dad left, but my grief has gotten lighter. I can move through my day now - as opposed to immediately after he died, when I struggled to move on.

Motivation

What motivates me to tell my story and be passionate about PKD awareness is that when I went through this experience with my father, I didn't access any supports or resources.

If I could give any advice to other PKD caregivers out there, it would be to search out mental health resources online, or through your job (such as Employee Assistance Programs).

If my story can help just one other person in a similar circumstance, that would be worth it. If I were in a similar situation again, I would want to hear other people's stories.

You're Not Alone

My father met people in dialysis who were going through the same thing as he was. By meeting peers in this sort of environment, and being able to share my story, it's a way to get people through some tough times.

The message that I'd like to put out into the Universe is that everybody's journey with PKD is going to be different. My dad's doctors had a lot of expectations about how his PKD would progress. Some of those things didn't happen.

I realize that my father kept himself in the dark at lot, at that time. He didn't want to learn about PKD. I would encourage others to reach out to others: to nurses, nephrologists, dieticians, and organizations like the PKD Foundation of Canada, who can help.