Editor’s note: The following essay is the 2nd place winner of Renal Support Network’s (RSN) 14th Annual Essay Contest. It is reprinted with permission from RSN. This year’s theme was “What Do You Know Now About Chronic Kidney Disease That You Wish You’d Known When You Were Diagnosed?” Read the 1st place winner.
I remember the day I got acquainted with chronic kidney disease, in May of 1998, at the tender age of 10. I remember waking up with my eyes swollen shut. With no warnings, no signs, kidney disease came into my life just like that. It wouldn’t leave so quickly. I would struggle with nephrotic syndrome C1Q nephropathy for six years before my doctor would look at me in a tiny room at the local pediatric hospital, exasperated and frustrated saying, “You’ll need dialysis or a transplant soon.” My kidneys had leaked too much protein. They were scarred and failing. It was a six-year fight until that day I knew I was dying in the back of my mother’s car and would go back to the hospital to start dialysis the next day, symptomatic and sick. Eight months of daily dialysis would pass. I would miss copious amounts of high school, proms, sleepovers, and time with friends, who seemed to have run far away, scared of the word “disease.”
June 8, 2005, at the age of seventeen, I got the call for a new kidney. I rushed to the hospital, full of hope and life. Adrenaline surged through my veins as I was carted off to surgery to begin a journey I had longed for since I was 10. The joy lasted eight great years, but my deceased donor kidney just couldn’t keep up. It had undergone chronic rejection for about five years and I was told I needed a fistula put in. More dialysis was ordered. Eventually I did hemodialysis, until my troublesome access failed, then I began peritoneal dialysis. I still do this today.
I sit in my kitchen at this moment, typing away thinking about my 10-year-old self. She was so angry, doubtful, and bitter. “Why did this kidney disease happen to me?” I would ask. I almost find humor in that statement now. Why not me? You see, my 10-year-old self didn’t know how I would grow through this disorder like a lotus in the mud. Ten year old me didn’t know that kidney disease would provide the tools to make me more patient, grateful, and happy. On days when I get a tinge of, “I can’t go on living on dialysis!” I find the strength within me to combat negative thoughts with a heaping dose of, “It is an honor and privilege to have a machine that can keep me alive in the midst of this disease!” I have also learned to wait patiently for my next transplant. There is no use fighting the waters: to swim, you have to go with the flow, and I know this from dealing with kidney disease. In addition, I know that life is a precious gift that has almost been taken from me more than once and that I need to treasure each breath like it could be my last. At the age of 28, I’m glad to know these truths that many people my age may not get to learn until they are much older. I’m on the fast track!
Kidney disease has also brought me to many great experiences and people. From a chaplain that helped me find myself and peace, to doctors that inspired me to attend college, to the other children at my hospital that inspire me to keep moving forward, to other volunteers of various organizations that help kidney patients and that teach me unselfishness, this ride has been a blessing!
So, what would I like to tell my 10-year-old self who was just handed a chronic kidney disease diagnosis? I would love to go back to those angry, bitter days of pulse steroids and chemotherapy and say, “This is about to be the hardest, most fantastic ride of your life!” I want that little girl to know that it’s going to be difficult, but she’ll learn the most valuable, important lessons about life that one can learn. She’ll meet fabulous people along the way that will inspire her to become a woman. She’ll cry sometimes, but get up with a renewed vigor and sense of purpose. She’ll be a kidney disease warrior. I now know that the experience of chronic kidney disease is a blessing in disguise, which is the silver lining I wish I had known about when I was diagnosed eighteen years ago.