When Olympic hopeful Chris Klug received the phone call informing him that an organ may be available for him, his reaction was familiar to many of us in the transplant community. "When I finally got the call I was relieved that the wait was finally over, but scared to death of the prospect of possibly not surviving the surgery." Nine years after having been diagnosed with Primary Sclerosing Cholangitits, a rare degenerative bile duct condition, Chris was on his way to the hospital for a transplant, and a chance at a new life. Post-transplant, Chris would be known for many special achievements, one of which is his medal in the snowboarding event at the 2002 Olympics. Today, Chris devotes much of his time to raising awareness about organ donation when he is not pursuing athletic challenges. In April of this year, Chris joined a group of Johns Hopkins pediatric kidney transplant recipients and donors to celebrate a second chance at life.
 | Olympian and transplant recipient, Chris Klug with Hopkins pediatric patient at the April 2006 reunion. |  | Pediatric team supporter, Lori Hartle worked with Astellas Pharma Inc to coordinate Chris Klug’s participation at the event. |
More than 180 individuals attended the biennial Johns Hopkins Pediatric Kidney Transplant Celebration, held this year on April 9, 2006 at the Pikesville Hilton. The reunion brought together patients who had been cared for by the Division of Pediatric Nephrology over the past two decades, including Jason Ogle, whose successful transplantation 19 years ago has allowed him the opportunity to attend school (he is now a college senior) and hold numerous jobs and volunteer positions without ever experiencing any major transplant-related hospitalizations or complications.
Despite the years that have passed since their transplant surgeries, Jason and other former pediatric patients still recognize that their lives have been profoundly changed by transplantation. They find ways to "give back" to the community to make life easier for others who follow in their footsteps. Since he has been in college, Jason has twice joined former pediatric patients as a volunteer counselor at the Hopkins Camp Allstars for all pediatric patients with Chronic Kidney Disease.
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| Special guest, Chris Klug poses with Hopkins pediatric transplant recipients who attended the reunion. A 5x7 color photo of Chris with each recipient and a personally signed copy of his book, "To the Edge and Back" was given to recipients at the close of the reunion. |
Tracey Serpi, formerly a pediatric patient, is now a proud member of "Team Maryland" and competes as a team member at the US Transplant Games. "I joined Team Maryland to be with a group of transplant recipients who understood what I had gone through and who did not let that stop them from participating in the sports that they enjoyed.
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I have now attended three US transplant games and I hope to attend many more," says Tracey. Former pediatric patient Hae Kim, now a kindergarden teacher returns every year to Hopkins, arms filled with hand-made ornaments her students have created to brighten the holidays for pediatric patients.
At the April event Dr. Barbara Fivush and Barbara Case, R.N., both of the Pediatric Nephrology Division spoke about how rewarding it is to be able to know and care for pediatric transplant patients, donors and their families. Barbara Case shared images and stories of each transplant patient and donor, new and old. They invited their special guest, Chris Klug to hand out roses and hugs to each recipient and donor. Recipients were given a rose with a quotation from Flavia Weeden that read: "Some people come into our lives and leave footprints on our hearts and we are never the same." Each donor was also given a rose, with an anonymous quotation that read: "To the world you may be one person but to one person you may be the world."
As special guest, Chris spoke about how such a monumental event as transplant can not happen successfully without the full participation of every team member – the recipient, the donor, the family members, the transplant staff and friends and supporters. He vividly recounted his personal experience – remembering the times when he did not think he was going to make it through the difficulties of his condition. He mentioned the challenges of the recovery and highlighted the determination he held onto to "never, ever give up." Shirl Wood of the pediatric renal division heard the presentation and spoke of how everyone related to Chris’ experience, "Everyone locked onto his words; he really captivated us with the way he told his story."
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The reunion offers an opportunity for children and their families who have received a kidney transplant to celebrate the gift of life. It is also a chance to mark how far many patients have come since that day. Says Barbara Case, "We remember when patients and families first come to us and they are overwhelmed by the whole transplant process. Their lives come to be defined by it. It is inspiring now to see that each of our patients and their families are experiencing full lives outside of the hospital just like their peers."
This event was made possible by contributions from Astellas Pharma. Inc., Radbaugh Florist of Towson, and the Johns Hopkins Childrens Center Telethon. Faculty members were also important in making this day possible, including: Dr. Fivush, Dr, Neu, Dr. Furth, Dr. Parekh, Dr. Amaral , Dr. Gerson, Dr. Atkinson, Dr. Brady and Dr. Fadrowski from the Division of Pediatric Nephrology. In addition to Barbara Case, pediatric nephrology team members Rene Shumate, R.N., Shirl Wood, Carrie Stanley, Beth Bounds and Alison Plowman were instrumental in organizing the event.
For more information about the pediatric renal patient support programs, please contact the Renal Divison at 410-955-2467.
