When I was younger, I knew my dad had an illness but I didn’t really understand what PKD was. He is one of 11 children, and we were always told it was a spontaneous mutation and he was the only one in his family with PKD. I found out I had PKD when I was 12. Both of my younger sisters have PKD too. As for the 50 percent chance of getting the disease, I guess each of us was on the wrong side of the coin.
When my dad started dialysis is when it really started to scare me because I knew I may be on dialysis one day too. My mother has been an amazing support to our family as we live with PKD, and she encouraged us to do the San Antonio Walk for PKD together. It was so comforting to be around others in the PKD community. I felt like I could finally breathe, knowing I was not alone. It was a sense of relief knowing there was someone else out there going through the same thing. The PKD Foundation provided me with a support system.
I was lucky enough to meet a woman who had just donated a kidney to her sister at my first Walk for PKD. My dad was still on dialysis and I was having a hard time coping with it. She showed so much love toward my family at a time when we really needed it. I didn’t know it at the time but some years later we would meet again, and she would be the reason why I became a PKD Foundation volunteer.
The PKD Foundation provides such a large network of friends, many of whom are going through our same struggles — you can’t find that type of support system just anywhere. After rupturing a cyst two years ago, I spoke with fellow PKD Foundation volunteers and we shared our stories with one another. Talking with them is what helped me get through it.
I’m happy to say that PKD has never stopped me. My parents were big on letting us live our lives to the best of our abilities rather than treating us as if we were fragile or breakable. My parents encouraged a proper diet and exercise as a recipe for success. I played sports in middle and high school and picked up taekwondo in my late 20s as a way of bonding with my youngest sister, who happens to be a third degree black belt. It was during taekwondo practice that I took a punch to my kidney, which led to the ruptured cyst. Of course everything is with limit—and while I practiced taekwondo, it was very clear that no one was allowed to hit in my kidney region, the punch was an accident. I have started running again as of a few months ago as a lower impact way of exercising. I don’t ever want people to think that you can’t do all of the things you want to do just because you have PKD.
I volunteer for and support the PKD Foundation because I live with PKD and the impact it has on my family. Both of my sisters are living with PKD and though my father has had a transplant, it still impacts our family. I think it’s important to always have an understanding of the changes that are happening in our PKD community.
I am now the San Antonio Chapter Coordinator. I am also involved in the San Antonio Walk for PKD. I speak Spanish, so I have been able to reach out to those that need help. We had a large team of about 80 people with many Spanish speakers, and I was able to help them register and join us to Unite to Fight PKD.
The PKD Foundation gives me such a sense of belonging and I knew I wanted to volunteer. I knew I had to go all in. With the PKD Foundation, I don’t feel like just a number and I know others understand what I am going through.