Nancy and her sons
In 1996, during exploratory surgery for endometriosis (which would not be confirmed until 15 laters), my surgeon found three fourths of my liver to be covered with cysts. I went through a battery of tests and found that I had cysts on both kidneys, as well, and I was given the diagnosis of ADPKD.
Neither side of my family had ever heard of PKD, let alone had it or any kind of kidney disease. After I was diagnosed, though, my mother was tested and confirmed that she had PKD, too. I was 33, my mom was 62. We have no knowledge of anyone else in our family having PKD. Twenty-one years later, we are still both here.
My PLD is more prevalent than my PKD. I have no problems other than some pain now and then and the fact that my liver is 3 times the normal size. I may have to begin charging admission each time I see a new doctor and they want their colleagues or med students to “feel my liver” because they are so amazed. I do see a nephrologist and liver specialist for annual testing. In October I will be 55, and my disease has not progressed to require anything like transplant or dialysis. My nephrologist is hopeful that I won’t even need dialysis later in life. I am very lucky, I know.
I have two sons, aged 23 and 25. They are my biggest concerns regarding this disease. I struggle everyday wondering if five years, 10 years or 15 years from now, I’m going to get a call from them saying, “Mom, I have PKD.” No parent wants to see their child sick, no matter how old they are. I do not bemoan my own health, I bemoan the fact that I may have given PKD to my sons and there’s nothing I can do about it. What is worse is that if they get it and need a transplant and I would be a match, I cannot give them a kidney.
I try to advocate on behalf of all PKD patients, help raise awareness, donate to help fund research and be my sons’ #1 support system if that time comes that they hear the words, “You have PKD”. No one should have to hear those words and then know that it is incurable.