PKD: Why I write and why I fight

Polycystic Kidney Disease, or PKD, might be a disease of the kidneys but it might as well be a disease of the mind because for those of us who face this disease it is a constant. PKD is the most common genetic disorder there is, affecting one in five hundred people. It is more common than diseases like cystic fibrosis, down syndrome and sickle cell anemia yet you have probably heard of these diseases. More than likely you are one of the many who unfortunately have not heard of PKD.

Had the disease not affected my family personally I might have never heard of it too. The disease is more common in men but for some reason the women in my family have had it. Historically, PKD dates back as far as we medically can verify to my grandmother Nina Brooks. I remember being a child of just ten years old and going with my mother to take my grandmother to Dialysis. Dialysis: another commonality in our family I will touch on next. My grandmother passed away when I was twelve and that was around the time I learned that my mother also had PKD. At the time that word seemed merely like a group of letters from the alphabet. I didn't really learn the truth of the disease until I was in my teens and my mother started having symptoms of the disease: pain from the cysts that were growing daily on her kidneys, medications from high blood pressure. Strangers would ask my mom if she was pregnant and that simple question would result in tears. Mom would cover her pain well at first but the pain took it's toll and eventually as she got into her sixties her kidneys failed.

There is no cure for PKD. Those who are diagnosed know thier fate will eventually be Dialysis or death: the double d's and not the ones my husband prefers. Dialysis is an entirely different subject. Dialysis patients are required to sit in chairs, or "butt flatteners" as my mom referred to, for a minimum of three days per week and up to five hours per day. Imagine having to stop your life to have your blood literally vaccuumed by a machine out of your body, cleaned, and put back. Blood is not the only thing that gets sucked out of a patient but it sucks the energy out as well. I was too young to really remember my grandmother's experiences with Dialysis, but by the time my mom's kidneys failed I was older and ended up taking her to her weekly treatments. I would watch her put her makeup on and do her hair as if going out on a date and smiling but that smile faded along with her energy. For a lucky few, a kidney transplant is possible. This alternative worked for my mom's sister, my Aunt Marilyn who had a successful kidney transplant a few years ago. Aunt Marilyn is a living example of why I fight this disease...that and myself. I also have PKD and at thirty-four years old I fight this disease as I already have to take blood pressure medication daily and watch my three daughters as I can only hope they don't get it as well.

There is too much to go into about the disease in one article but this gives you an example of why I write and why I fight. I will continue the fight against PKD and because there is no cure I will continue to spread the word about PKD and the need for organ donations.

If you have any questions about PKD or how you can spread the word, contact me at Stone3snuggles@netzero.net.