Care enough to share

Abstract

My boss, Dr. Weiss, was concerned the first time he met my husband, Robb. He noticed the bags under his eyes, and pulled me aside to ask whether he was being treated for kidney disease. For a well-trained physician this outward sign of possible kidney disease was easy to detect, but to the average person kidney disease is invisible. A little more than a year later, Robb received a kidney/pancreas transplant from a deceased donor. My husband was extremely lucky. He waited only three months on the transplant list while he was treated with both in-center hemodialysis and home peritoneal dialysis with a cycler. Both transplants were immediately successful. The restrictions imposed by dialysis and insulin are now a decade in the past. Robb started a kidney support group to share information and hope with others facing chronic kidney disease. Through this group, we met others facing the same challenges and gained exposure to organizations and programs that help kidney patients, transplant recipients, and caregivers. Of all of these, the National Kidney Foundation U.S. Transplant Games were the most inspiring. It was amazing to watch competitions in track and field, swimming, basketball, and a host of other sports, realizing that each and every athlete had overcome life-threatening organ failure. They were all already winners. Just by showing up for the Games and living full and active lives, they proclaimed the message that transplantation works. The donor recognition and memorial ceremonies at the Games were a sober reminder that the miracle of transplantation requires the sacrifices of donors to transform loss into gain. After the 2006 Games, I could no longer ignore the persistent inner calling to offer myself as a living donor. I had been active in volunteer projects for the National Kidney Foundation (NKF) and transplant-related charities, and in promoting organ donation by sharing Robb's experience. Doing is always more powerful than speaking. If I really cared about those who were waiting for a life-saving kidney transplant, I had the power to do something about it. I needed to extend myself, stepping temporarily out of my comfortable life, to share my extra healthy kidney with someone in need—a perfectly matched stranger. With improved education, creative matching, and less invasive surgical techniques, I hope that more healthy people will step forward as living-kidney donors. Some friends and co-workers found that part unimaginable, yet most healthy people I've asked say that they would definitely want to be tested to be a donor if a family member or close friend needed them. That is great news for the nearly 80,000 Americans waiting for a life-saving kidney transplant, since almost every one of them has at least one healthy living donor prospect in their extended circle of family and friends. The success stories of living-donor chains in the media recently perform a great service by opening prospective donors' minds and hearts to the beauty of donating to a stranger, especially when it helps someone near and dear. Non-directed donors act as catalysts, stimulating more matched pairs and longer donor chains. Truly, my only regret is that these programs were not available in my area at the time of my donation. Establishing a national database for paired exchanges, covering donor expenses, and establishing a living donor breakthrough collaborative are just a few of the recommendations of the NKF's End the Wait program. This multi-faceted initiative recognizes the complexity of issues that impact the waiting time for organ transplants in the U.S. and proposes realistic solutions for eliminating the waiting list within the next 10 years. I must admit that I cared little about kidney disease until it touched someone close to me. There are so many diseases and misfortunes in life; I couldn't possibly take the time to care in a meaningful way about all of them. Most people operate that way, saving true care and concern for the causes and concerns that affect someone they know. For those of us who have watched someone close lose freedom, energy, and even the will to live, it is impossible to withhold concern. Lives touched by chronic kidney disease are changed forever. With improved education, creative matching, and less invasive surgical techniques, I hope that more healthy people who have a reason to care about chronic kidney disease will step forward as living kidney donors. My right kidney is alive and well in a 74-year-old grandmother from New Jersey who waited six years for her second chance. My gift enabled her to celebrate her 50th wedding anniversary and three more birthdays—so far. Unencumbered by the demands of dialysis, she has visited her children in Georgia and Virginia, and joined me at the living-donor recognition ceremony at the NKF's 2008 U.S. Transplant Games in Pittsburgh.