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Just before the final year of her pharmacy degree, Kristen Walsh was diagnosed with polycystic kidney disease (PKD), a tough pill to swallow. She's watched her mother, Cindy live with PKD for years, but living it herself, is a completely different experience.
After graduating in 2020, Kristen wrote about her first year living with PKD coinciding with her final year and graduation from the School of Pharmacy at Memorial University in St. John's, Newfoundland. "Life has a funny way of teaching us lessons sometimes," she wrote. "At least, that's how I like to look at my situation. I hope to be able to take this experience in my own life and use it to care for my current and future patients."
Finding the silver lining in a chronic disease diagnoses isn't easy. As Kristen will tell you, it takes work.
"At the beginning it was so overwhelming. I had issues with mental health – anxiety, depression – prior to my diagnosis, and after being diagnosed, I could feel it starting to creep up on me again. I went to see my therapist who I've seen for years. She told me I was grieving my healthy self and that this was just the beginning."
As far as Kristen and Cindy know, Cindy is the first diagnosed case of PKD in her family. Cindy was diagnosed at the age of 21 when she was pregnant with Kristen. While Cindy has her speculations who else in the family might have had the disease, there’s no way to know for sure.
"My mom and I have definitely become a lot closer since I was diagnosed, we were really close to begin with, but being the only two to have PKD in the family – it was very emotional at first, but we got through it. It's nice having someone who has the same dietary restrictions as you."
Food has played a huge part in Kristen's PKD journey. "At the beginning, there were so many restrictions and measurements – I didn't know what to eat or how much water to drink. It was so hard to find recipes and figure out the day to day routine."
Once Kristen found her footing with PKD-friendly cooking, she created an Instagram account to share her findings and experience with others. "I fine-tuned a lot of recipes and I wanted to share that. If just one person comes across a recipe they like, that's something good that comes out of me being diagnosed."
"I was a little nervous when I first made the account because I didn't know if people were going to criticize me for constantly talking about my disease because it is something I talk about all the time. I know kidney disease is just a fraction of who I am – I don't want people to only see that part of me and pity me for it – but I don't want people to feel like they can't talk about their disease. If someone has diabetes, tell me about your diabetes, talk to me about your depression or whatever. Instagram has been great like that. I get a lot of good feedback. People message me to ask questions about ingredient substitutes and little things like that. That doesn't seem like a big deal but it makes a difference in my day."
The prospect of kidney failure has become a reality for Cindy. At 20 per cent kidney function, discussions about live donor kidney transplant and dialysis are becoming more frequent.
"They're hoping to get her a preemptive transplant so she can avoid dialysis. We're thinking about looking for a match now so when the time comes, we'll have a plan in place. They also told us about the paired donation program, so that’s an option too."
Even though she started managing her PKD early, kidney failure is a possibility for Kristen as well.
"I was talking to one of the coordinators for living donor transplants. I wanted more information for my mom and I was explaining that I have PKD too. The coordinator asked if I knew my blood type. I told her I was O positive and she said, 'you need to break up with your boyfriend and find an O,' it was pretty funny."
Only time will tell if Kristen will need a transplant. "It depends if my PKD progresses in the same way that my mom's has. And if I end up needing a transplant, who know what will exist by then – there could be bionic kidneys at that point."
Having come to terms with her diagnosis, Kristen wants to help others do the same. "It sounds so simple, but it's complicated; PKD isn't a death sentence by any means, but it is life-altering."
"It's not always easy to accept the cards you've been dealt, and then you have to figure out 'where do I go from here?' I want to help people figure it out – that's my goal: showing people you don't have to feel guilty about having a disease and being upset. Being upset is part of the process. I want to show people that it's okay to grieve, and we can figure out where to go from there together."