My Personal Journey with End Stage Renal Disease
By Lewis Burton, kidney transplant patient
I was 23 years old, and my girlfriend had made an appointment with a walk-in clinic for a check-up. After taking my blood pressure, the doctor told me to lie down and try to relax. He turned off the lights and left the room. I thought, “Oh, that’s not good.” Within six hours I was in Baptist Hospital trying to understand End Stage Renal Disease with a host of strangers. I was the daytime manager of Spicy’s restaurant on the Strip. I rode my bike back and forth to work each day out of Fort Sanders. It was hard to put the lifelong disease these folks were telling me about in accord with the minor headaches and weight gain that prompted my check-up. In many ways this was the end of one life and the beginning of a new one.
I had become the uninsured and uninsurable. Just out of college, making $2.65 an hour + tips, I had acquired a diagnosis that would never go away, one that no insurance company would touch with a ten foot pole. Perhaps more painful than the mental and emotional adjustments I had to make with my health were the bills I began to receive. The debt gave me a physical ache in my chest. I was fortunate to receive help in the form of Tenncare, a branch of Medicare. John F. Kennedy had passed a bill in the 1970′s that allowed special provisions for people diagnosed with ESRD. This was to be my saving grace for the next decade as I progressed through dialysis and a transplant. The American people had seen fit to save my life. I cannot begin to express my gratitude for this gift. My family and I have paid our share of medical expenses, but without the help of the American taxpayer, kidney failure would have taken my life and left my family bankrupt.
Almost half of my family members are teachers. Growing up, the one thing I knew about my future was that I would not teach. Oh, how God laughs. As I roused from my post-transplant anesthesia fog, I found my mother and grandmother in the room with me. They were ready to talk about the next steps in my life. Together, we came to the conclusion that teaching would be the best path to serve my community and give back some portion of my second chance at life. So, I returned to college at Carson-Newman, earned a teaching degree, and landed a job at Mount Olive Elementary School in South Knoxville. I remodeled a 1,000 square foot home in Vestal and ran every day with my dog, Jake. Life was routine.
I held very little hope for a romantic love. Even when I first saw her walking down the hall of our school and I was shocked into looking for a wedding ring by her beauty, I didn’t really believe a family could be in my future. I was determined not to discuss my health on our first date. I wasn’t being deceitful; I just wanted to have a pleasant evening for its own sake. I had no idea who I was on a date with. Within 45 minutes, she had all my secrets, and I was crawling across the dinner table to kiss her. Her name was Sarah.
That was the beginning. We’ve been married six years now, and she has given me a family – a daughter and a son that I never thought would be in the cards for me. Six years ago, I saw her as a beautiful, intelligent, hardworking, sweet woman who was miraculously able to see value in me. What is even more amazing is who I see now. Sarah has turned all those skills to public service through the East Tennessee Kidney Foundation. She currently serves as the board president. My wife is one of those people who puts hope in the world. She does the things that softens the edges for people. She helps put civility in our society. Just last night she cooked spaghetti and brownies for a family that had been in a car wreck. I am more in love with this woman than ever.
What she and her friends have created in the last three years with the East Tennessee Kidney Foundation is one of those rare spots in the world where the good fight is clear. The money raised by the organization is used to help local people right away. The service is life-saving transportation to and from dialysis for people who can’t afford it. The East Tennessee Kidney Foundation also tries to create donor awareness to help people such as myself, a husband and a father, find that life-saving transplant. We are all faced with so many choices where evaluating right and wrong is an overwhelming task. All we really want is a Rocky to cheer for. The East Tennessee Kidney Foundation is that fighter. At this stage in its growth, the mission is pure, simple, and right. The hits are effective and true. Here is the one to back. If you are compelled to participate in philanthropy, you need not worry whether your money will be diverted to a less noble use. You can be one of the good guys and save people’s lives.
As my own health continues to decline and I find myself once again in need of a transplant, I am grateful for my wife and our family. I am grateful for the support of the volunteers of the East Tennessee Kidney Foundation. Their passion, dedication and willingness to share their personal stories of kidney disease give me hope and reassurance. As my wife often says, “We got this.” Yes. Together, we got this.
For more information about the East Tennessee Kidney Foundation, call 865.712.6594 or visit www.etkidney.org. You can also find us on Facebook and Twitter.