Voices of PKD Blog
April 26, 2021

Tetyana Walker, Winnipeg MB | Voices of PKD

My name is Tetyana and I wanted to share my PKD story with you. I found out I had PKD at 22 at an emergency department here in Winnipeg MB. It was discovered by mistake. I had absolutely no knowledge what PKD was or how serious it is. I didn’t realize at the time how this was going to change my life. I am the first in my family to have PKD. I came from a small town in Ukraine called Ivano-Frankivsk, so I am not sure when the cysts started growing on my kidneys as they didn’t do ultrasounds back then.

The first time I experienced a symptom, which I did not realize at the time was when I was 17. I would get sharp pains on my sides that would last a few seconds, sometimes they wouldn’t come for days or months, other times I would get them often. I didn’t realize at the time but I know now that I probably had the cysts there at that time for sure. It took me a few years to really come to terms with what I have and even form a good understanding of what PKD is. I don’t know if it was denial or the shock, but I lived in doubt and hope that one day the cysts would go away. One day it hit me and I'd be lying if I said I didn't cry and say “why me?”

After my third child, my blood pressure went up and has never came down, so I am on medication now. Also, the last few years I have started getting pain on my sides, mostly my right side and it's hard to bear the pain sometimes. I don’t like showing it as much I'd like, to be strong for my family. Its new to me.  I always try to remember what I have eaten; perhaps too much salt or perhaps it's just my kidneys being affected by PKD.

I am a mom of 3 kids. They make my life complete and they are my biggest blessings in life. It scares me, the thought of ever leaving them. I knew that my kids would have a 50/50 chance of having PKD, but hoped they would not. We recently found out our daughter who is 3 has cysts on her kidneys. That news broke our hearts and crushed our world. No parent wants their child to inherit this. I spent the day devastated, crying in pain for her thinking the worst and praying for the best, praying that she lives a happy, long fruitful life. Then I decided to be strong for her, which brought me here.

I decided to write my story in hopes of inspiring others who are going through this to have hope and be strong. I hope I can reach people who are able to provide support, donations, words of wisdom or participate in any events that help fund the PKD Foundation of Canada. I am doing this for my daughter I want to do what I can in hopes that one day we can have a cure for PKD, and that our kids will not have to endure the same path we did with our battle. I stay hopeful that one day the cure for PKD will come and I’ll forever be grateful to every single person who has helped get there. I stay hopeful that my other 2 children do not have PKD. I will do everything I can to provide help to the PKD Foundation of Canada for a better future for our kids, so they can live a PKD free life and not go through the pain that we go through, the pain- the worry- the struggle. Let's support one another for a better future!

Since initially reaching out the PKD Foundation of Canada, I have opened up a new chapter in my community and become the Winnipeg Chapter Coordinator! I’m looking forward to making a local impact in the Manitoba, in the fight to end PKD!

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