Growing up with kidney failure
Ever since I was four years old, I have been living with kidney failure. My experiences led me to pursue a master’s degree and become a Child Life Specialist—someone who normalizes the hospital environment for children and their families. Child Life Specialists explain new diagnoses, prepare for procedures and tests in developmentally appropriate ways, and use play to distract from painful and potentially trauma-invoking experiences.
I know a lot about painful and trauma-invoking experiences. When I was diagnosed with end-stage renal disease (ESRD) at four, I began taking loads of medication. Each medical complication throughout my childhood caused me to become more anxious and scared. I never felt in control of my life.
When children go through medical interventions that are not properly explained, they tend to internalize their pain and suffering. Young children who have multiple traumatic medical interventions can start to believe that they did something to cause the pain. That was me.
Growing up with kidney failure was not easy on my family or me. I hated having to miss out on school dances, soccer games, and fun. I felt alone—like I was the only one struggling with this disease. Ambulance rides and hospital stays were a source of trauma and stress.
Fortunately, in March 2002 (when I was 12 years old), I received a kidney from my mom. I could finally live a life uninterrupted by hospitalizations and needles. I could play soccer without feeling like I was going to pass out, dance, and most importantly was able to go to school and hang out with my friends. But I was still a kid living with kidney failure, taking immunosuppressant drugs, and “different.”
My transplant coordinator suggested a visit to a camp in Maine for kids with life-threatening illnesses and their families. Camp Sunshine is a place where children can be children, while still receiving the medical attention they need. My family and I attended a week specifically for kidney transplant recipients. That experience made me feel like I wasn't alone; there were others struggling with the same things and sometimes their situation was far worse than mine. This helped me put my illness into perspective. My mom's questions involved how to be there for her chronically ill child, and still be present for her healthy children. She learned that balance is key in a hectic predicament, and that children with a life-threatening illness have to be raised to LIVE.
My mom says donating her kidney is the best decision she’s made in her entire life. She has told me, "If I could grow kidneys and give them away, I would go through that surgery time and time again.” Today, my mom is a healthy nurse practitioner who hikes, travels and appreciates the little things in life. My mother is my hero; she was able to give me life not once, but two times.
I took advantage of this healthy time. I graduated from high school, college and graduate school. I traveled and lived! I graduated in 2014 with my master’s degree and I landed my dream job as a Child Life Specialist at Miami Children's Hospital. I wanted to give back—to give children a sense of normalcy during an incredibly traumatic time in their lives.
A year ago, when I was 25, my transplanted kidney failed and I started dialysis. On that day, I had to come to terms with the fact that I could no longer work in my field due to immunosuppression and the physical drain of my dialysis treatments. Thankfully, the American Kidney Fund is helping me financially so that I can keep my health insurance.
I am hopeful that there is another kidney for me in the future, perhaps as part of a paired donation chain that begins with an altruistic donor. I am only one of the 100,000 people in this country who need a kidney, but I hope that sharing my story may inspire someone to be a kidney donor (as my mom can attest, you only need one kidney to live!), or to register as an organ donor so that even in death they can give people life.
Riley Crowder lives in Arlington, Massachusetts with her boyfriend Andy. Her story has a happy ending -- a close friend of Riley's who was not a match was willing to donate a kidney. On May 31, 2017 her friend donated a kidney to someone in California, and the next day, Riley received a kidney from someone in California. Three months later, Riley completed a 70-mile hike along the Appalachian Trail with her mother.