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Kate’s Story

Too often, the idea of supporting research can feel abstract.
There I was, 25 years old, sitting in front of an emergency room doctor asking: What do the kidneys do again? I had been having severe headaches for months. There was some dizziness. But no, I’d never considered my kidneys.

I was sick. My kidneys were functioning at just 13%. Some people might call that a wake-up call, but I didn’t even know I was asleep. I still look back on the day I was diagnosed with chronic kidney disease and wonder: What if I hadn’t gone to the hospital that day? How different would my life be?

Lives are so often turned upside down with a diagnosis. It leads many of us in the kidney community searching for ways to help one another. But, too often, the idea of supporting research can feel abstract like it has more to do with people in lab coats than people living with chronic kidney disease.

By getting involved with patient-oriented research, I’ve had the opportunity to make changes that will affect my life and the lives of so many other Canadians. So, for example, we know it’s too expensive to screen everyone for kidney disease. At the same time, we want to make sure at-risk individuals realize they are at risk. It takes research to figure out the best ways to make that happen. It takes research to help our government decide how to deal with it in the most cost-effective way possible.

I am relatively young and also quite lucky compared to many other kidney patients. I’ve managed to more than double my kidney function and keep it stable for several years thanks to diet, medication and exercise. When you meet me, you might not even know that I am sick. The reality is: one in ten Canadians are living with kidney disease and not all of us look sick.

But the future comes with no guarantees. I think about whether I will one day need dialysis or a transplant. I worry, if I decide to have children, am I putting myself, or them, at risk? I wonder if another young woman could be diagnosed earlier and learn to make the necessary changes to protect her kidney health?  -- Those answers cannot wait.

Ultimately, some of us face kidney failure but the majority of patients have early stage kidney disease and struggle to figure out how to live with it, day-to-day. No one should have to face that journey alone. That’s why, for me, connecting to the wider community has been so important. It’s what led me to this exciting project.

Every year for the last four years my mom - my number one supporter - and I participate in the Kidney March in Calgary. We walk 100km over three days! Even my dad came along to help out last year, setting up all the pit stop stations.

As my involvement has grown, I’ve seen first-hand that people living with kidney disease and their caregivers are in the best position to help other patients going through the same thing. Of course, we would all like to see a cure, but in the meantime, we want to know that everything possible is being done to improve people’s quality of life now. Not in 10 or 20 years, but now.

Who better to give input to nephrologists and clinicians and decision-makers across the country, than those of us who have been there ourselves? At the end of the day, we all want the same thing: we want to make sure the right patient receives the right intervention at the right time.