I am 39 years old, and up until recently, I never gave a second thought to my kidneys and had never heard of PKD. That all changed a couple of years ago. Me and my family were vacationing in Florida when my son came down with food poisoning. He was 12 at the time. We ended up in the hospital to check for appendicitis. Everything came back clear, but when we got home to Michigan, he ended up back in the hospital with food poisoning. At that point, they did a CAT scan. All things were fine except he had multiple cysts on both of his kidneys, a total incidental finding. That was the first time I heard the term polycystic kidney disease.
We were given a dire outlook with the nephrologist saying he could be on dialysis by age 40. Being sent home with this bombshell, I of course started researching everything I could about PKD. I decided to take my son to the best doctors at U of M. There, we were given all the information we needed and much better treatment and advice, but we still didn’t know how this could have happened. There are no members in the family with PKD. We had never even heard of this disease before.
With nowhere to turn we decided we should all get our kidneys checked. I was first. Surprisingly, I was told I too had PKD. I was in shock. This led to my parents getting tested, which came back negative. I still and never will understand how I got this genetic mutation. I found out this year that my daughter also has PKD. We are lucky in knowing and finding out we have it in the fact none of us are symptomatic and we can try to be as preventative as possible!
I have hope that there will be a treatment soon and that we will never have to suffer the pains of this disease. It breaks my heart to know my kids may have to deal with some tough times and decisions, especially if they have children. It frustrates me constantly that this disease picked me to mutate in! I think about all the people with this disease who have symptoms and suffer. We just have learned to live ultrasound and hope everything stays stable and this disease will never show its face.