When I was first diagnosed with PKD at ten years old, my nephrologist told my mom and me, “You will probably follow your same family history and not be affected until your late 40s to early 50s,” but my mom and I are the exception to this statement.
Looking back at our family history, my mom and I are on opposite ends of the spectrum regarding how PKD has affected us individually. I am the youngest member of our immediate family to experience such severe side effects from PKD, and I am also the first to receive a kidney transplant. Whereas, my mom was diagnosed in her early 20s and is the longest-living member of our family to not endure any severe side effects from the disease. She has cysts on both her kidneys and liver, and her high blood pressure is controlled with medicine. She experiences minimal pain, her creatinine is stable, she’s never had a cyst bleed, and never had to endure dialysis or need a kidney transplant.
Our health journeys are like night and day and don’t mirror any of our other family members’. From both personal experience and the stories of other PKD patients whom I have met, this disease seems to affect everyone differently– both physically and mentally.
Today is my mother’s 60th birthday! She has outlived everyone in our immediate family with PKD. Mom has not only outlived them age-wise (because the oldest to live was her mom who passed from PKD at 53), but she is healthier than any of them were, too. This is monumental. It is a day to be celebrated with overwhelming gratitude and joy. No words can justify what this day and every day with my mom being healthy means to me.
Although my mom is breaking records, health and age-wise in our family, she has seen, felt and mentally endured so much in her 60 years of living with this “family” disease. There are many family members my mom never met because of PKD. She watched her mom fight long and hard with PKD and then die when my mother was in her early 20s. She saw her sister pass from PKD because she made the decision to not do dialysis. She also saw her stepbrother pass from PKD while he was on dialysis. On top of all of this loss, both of her children – my brother and myself – have PKD. I honestly think that all she has endured–with raising me and witnessing and supporting all that I have battled because of PKD–was harder than me going through it.
My mom is a remarkable woman. I am so thankful to have her alive and healthy. I am grateful for her strength in helping me pull through all that I have endured because of this disease. She is an incredible mother and friend with whom I share an irreplaceable bond, and can get the giggles with like no one else. She has seen so much and has been deeply affected by PKD. I feel blessed that my mom and I are the exceptions in our family. My wish is that she will continue to keep breaking family records, both in age and health.
Mom and dad are visiting Noah and I in California this weekend and I can’t wait to hug them and celebrate this special day. When living with PKD, you learn that every day deserves to be celebrated.
Happy 60th birthday, Mom! I love you bunches and bunches!
Please join me in wishing my beautiful mom a healthy and happy 60th birthday!!!
How does PKD affect your family?