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.