To know me is to know my family and PKD: how PKD defines my family, but does not hold us back. How PKD is in our daily thoughts, but does not hold us back. How PKD challenges us, but does not hold us back. How PKD tests our strengths, but does not hold us back.
I am a second generation PKD patient. My mom died 26 years ago at the age of 62 due to complications from dialysis. I look back and at that time knew she was way too young to die. I knew myself and four siblings had PKD, but the effects of this horrible disease always seemed to be out in the distance for us all. How did those years go by so quickly?
I look back over the years and see how my family has been blessed again and again with kidney transplants: my sisters Mary and Janice had theirs on Feb. 1, 1999 and July 6, 2005, respectively, my brother Michael had his on March 14, 2013, I had mine on Aug. 18, 2014, my niece Amanda had hers May 28, 2015, and my other brother John just had his on Feb. 12, 2019. I am amazed by the success we’ve had, and Amanda even had a baby post-transplant!
My family focuses on not being discouraged by PKD, but rather humbled by so many selfless people that have agreed to be kidney donors. If it were not for these selfless people–Tom, Carol’s brave decision to donate her son’s organs, Jennifer, Maria, Joe, Judy and Augie–our lives would be so different. Where would my family be?
What have we all learned with having PKD? Every family has illnesses in front of them. We all need support. Every PKD situation is different, even within our family. Every hospital’s protocol is different. Be your own advocate, take moments to be sad, scared and angry from this terrible disease.
My family has hope for the future that there will be a cure for PKD and our children and grandchildren will not be challenged by this disease. In the meantime, we will fight for a cure. #endpkd #donatelife
To all the donors out there, thank you for giving us something so precious. We won’t let you down!
What’s your PKD story? Share it with us at Voices of PKD!