PKD. Who knew these 3 letters would hold so much significance in my life.
What is PKD?
PKD or Polycystic Kidney Disease is a genetic disorder characterized by the growth of numerous cysts in the kidneys. Over time, kidney function decreases resulting in kidney failure.
As a child I knew very little about this disease other than what I witnessed my grandmother go through. I knew it made you tired, that you had to spend countless hours in your room hooked up to a machine, and that if you were lucky, you would have an operation to get a new kidney. A pretty elementary understanding.
I really didn’t know how much this disease would impact me. My naive mind only understood it as an isolated incident. Never did I think that my father, and two of his siblings would also be affected. And never once did I think it would affect me, my siblings or our children.
It didn’t seem like much at first. So they would end up with a few cysts on their kidneys. What did that really mean anyways? Change of diet? More exercise? More sleep?
Fast forward a few years, my grandmother passed, my dads brother needed and received a new kidney from his loving and selfless wife and my dads sister started regular dialysis and was placed on the transplant 7-9 year wait list and recently received her “gift of life”. My dad – well, let’s just say that despite being a strong man, his vitality and stamina has already begun going down hill, his creatinine levels slowly rising, and the conversation and preparation for transplants have begun. While transplant is a gift of life, it brings new challenges as I now watch my uncle struggle once again with a failing kidney due to a compromised immune system. In this disease there is hope yet there is still great uncertainty. Our finish line is a cure.
Why am I writing about this?
September 4th is National PKD Awareness day in Canada and I want to put a face to this prevalent yet not widely known about disease.
The reality is my father will need a transplant. Until then, he will likely find himself struggling for energy to keep up with his grandkids, who are too young to understand why their grandfather can’t play hide and seek or soccer as much as he used to. He will need to continue to carefully watch his diet, take meds for blood pressure, and make many other life changes to accommodate this devastating disease.
As for me, my siblings, my cousins and our children? We don’t know if we carry the gene, if or how severely we will be affected or if we’ve passed this on to our children.
Today, I raise awareness for my family and for the many others who fight every day to end PKD.
PKD. Three letters that have changed my life.
For more information about PKD, visit http://www.endpkd.ca
Photo: Team Risi at the 2014 fundraising walk