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!
The PKD Foundation of Canada Chapters are led by volunteers who want to make a difference in the fight to end PKD. We are currently recruiting key volunteers to help with our efforts this year! If you live in the area and are interested in joining our national network of volunteers, visit endpkd.ca/get_involved to sign up!
Contact the Winnipeg chapter coordinator