Weeks before my fifteenth birthday, I sat before my nephrologist as he handed down a diagnosis of Chronic Kidney Disease. A congenital heart defect I was born with had significantly reduced the blood flow to my kidneys during my first month of life, causing an acute kidney injury. Surgery repaired my heart, but my kidneys remained small and scarred. Now they struggled to function, and my nephrologist told me that a kidney transplant was very likely in my future. It was a scary prospect, but if anyone could encourage me to live well with the diagnosis I had received, it would be my twin sister, Andrea. Growing up, we shared a bedroom, love for reading, and were inseparable sidekicks. Just as Craftsman houses come with built-in cabinetry, I knew she’d be my built-in encourager.
Telling Andrea I had kidney disease and would need a transplant was difficult, but after shedding a few tears, she announced, “You can have mine.” That was problematic. Although my nephrologist said I wouldn’t likely need my transplant until college, there was a chance it could come before my eighteenth birthday—and my medical team wanted my living donor to be at least eighteen. But that didn’t deter Andrea. She jokingly renamed herself “The Body Part” and decided that our mission was to make my own kidneys last a bit longer to ensure she’d be old enough to donate if possible.
Andrea’s ongoing encouragement to enjoy life as a young adult has made me realize that kidney disease doesn’t need to be the centerpiece of my identity, just a part of it.
I was to do everything I could to keep my kidneys happy, and she would encourage me and keep us focused on living well with kidney disease. One immediate step involved dietary changes. Through a dietitian, I learned that I needed to adopt a diet low in phosphorus, sodium, and potassium to aid my kidneys, and high in calories to gain back the six pounds I’d lost prior to diagnosis. Yet when I told my sister about the new plan, panicked by the changes, she assured me that it’d be okay and that she’d help me. Her method was simple: put the food on the kitchen counter and command me to eat (in that sisterly way). It worked! I gained back four pounds in a month, started feeling better, and soon got the hang of preparing kidney-friendly meals.
With her no-nonsense encouragement, I came to realize I could live well with kidney disease. I just had to make smarter eating choices and take my medications as directed—both habits that quickly joined the rhythm of my daily routine and allowed me to carry on living.
As high school morphed into college, Andrea continued to encourage me to live well with kidney disease. An aspiring librarian, she put her research skills to work. She located and encouraged me to browse online support communities and articles on dietary information—resources that have led me to become more knowledgeable on my disease. In a domino effect, this allows me to take ownership of my condition, which then enables me to live well. For if I have the tools, both medical and informative, I need to manage my kidney disease, I can go to school, work, and do anything I wish without needing to stop living.
Above all, Andrea knew that focusing on living life would be key to living well with kidney disease. She refused to let me become defined by it, insisting we go to school events, join our high school choir, and concentrate on doing well academically. Had we not done those things, I would have had more time to fret instead of live. Even now, she still encourages me to embrace life. We travel together and try to exercise regularly. Andrea’s ongoing encouragement to enjoy life as a young adult has made me realize that kidney disease doesn’t need to be the centerpiece of my identity, just a part of it.
Eight years have passed since my diagnosis. Thanks to our efforts at keeping my kidneys afloat and our minds on living, I’ve graduated college, am pursuing a special education teaching credential, and still haven’t had a transplant. My kidney function is declining, but at a slower rate. There’s no new prediction of when I might need “The Body Part’s” kidney. In the meantime, I’ll continue to live well with kidney disease while Andrea, like many other supporters of kidney patients, encourages me.
Abigail Clary is a northern California resident who was diagnosed with Chronic Kidney Disease secondary to an acute kidney injury caused by Coarctation of the Aorta and premature birth. She graduated from Sonoma State University with a BA in Liberal Studies in May 2017 and is now in a teaching credential program in pursuit of her dream to teach special education. In moments of free time, she enjoys reading, playing piano, and spending time with her sister.
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