Transplant Chronicles Volume 6 A publication for transplant recipients of all organs and their families, Number 4 published by the National Kidney Foundation, Inc. Transplant Trotters Celebrate Life by “O.B.” O’Brien T his is a true story about a group of Oregon and Larry got together with several other transplant Washington transplant recipients who didn’t like recipients to see about forming a team to enter in the way a lot of the public perceived them after the next race. With the assistance of the Oregon transplantation. They were seen practically as Donor Program and the National Kidney Found- vegetables who were hardly able to care for ation of Oregon & SW Washington, a team was themselves. They wanted to change their image by formed and called Transplant Trotters. The team doing something bold and daring that said, “We was led by captain and manager Richard Moody, are just like you, except we have a few used parts!” who received a heart transplant at the age of 49, and Richard and I served as An idea formed in the the two group leaders. Our mind of Larry Huot, a two groups included Bill liver recipient, who knew Bray, Sabrina Feldman, someone who had Bert Fox, Stuart Hudson, participated in the 1996 Don Johnson, Marie Kent, Portland-to-Coast 125- Sue Mercer-Cory, Theresa Mile Relay Walk. Palla, Jennifer Rigert and Portland-to-Coast is the Rob Wheaton. Each group largest relay race on this had six team members, one continent. The event van and a volunteer driver. involves 19,000 people, Also, according to the relay including 2,000 support race rules, each team people and 3,500 provided three volunteers volunteers. The race- The Transplant Trotters “relay” a strong message for race control assignment. walk event starts in about the capabilities of transplant recipients. Portland and finishes 125 I would like to tell you a miles west at the Pacific Ocean. There are 24 relay little about the ordinary, yet extraordinary, people legs to cover over the 125 miles. Each leg ranges who make up the Transplant Trotters. The team from 3.8 miles to 7.6 miles, with an average includes seven men and five women, plus our two distance of 5.2 miles. Some of the legs are flat and volunteer drivers. Our ages range from 16 to 63, on asphalt roads, while others are on dirt or gravel and we cover almost all of the major transplant and are very hilly. Continued on page 3 Transplant Chronicles is a Program of the National Kidney Foundation, Inc., supported by Pharmaceuticals Corporation National Kidney Foundation® ✍ editor’s desk Transplant Chronicles Happy New Year! Chronicles is Transplant Chronicles is published by ringing in the New Year with the National Kidney Foundation, Inc. additions to our publication. First, Opinions expressed in this publication do not necessarily represent the we have two new editorial board position of the National Kidney Foundation, Inc. members. Janet Karlix, PhD, is a Editor-in-Chief: Beverly Kirkpatrick, LSW PharmD at the University of Florida Philadelphia, Pennsylvania in the Transplant Division. We look Editors: forward to providing you with the Ira D. Davis, MD Vanessa Underwood, BS, Cleveland, Ohio AFAA, ACE most updated information through Maurie Ferriter, BS Plaistow, New Hampshire Janet's experience in transplant Lakeland, Michigan Jim Warren, MS Beverly Kirkpatrick pharmacology. Charlie Thomas, Janet Karlix, PhD San Francisco, California Gainesville, Florida Becky Weseman, RD, CNSD, CISW, ACSW, also joins the editorial board as the Teresa Shafer, RN, LMNT social work editor. MSN, CPTC Omaha, Nebraska Ft. Worth, Texas Laurel Williams Todd, RN, MSN You will also notice a new column in this issue, Nancy Spinozzi, RD Omaha, Nebraska Boston, Massachusetts R. Patrick Wood, MD “Between Donor Families and Recipients,” that was Charlie Thomas, CISW, ACSW Houston, Texas added to share the flood of communication received Phoenix, Arizona from recipients and donor families. These letters, Editorial Office: stories and articles will hopefully encourage recipients National Kidney Foundation, Inc. 30 E. 33rd Street, New York, NY 10016 to communicate with donor families who play the most (800) 622-9010/(212) 889-2210 integral part in their transplant. http://www.kidney.org Executive Editor: Editorial Director: Have a great year and keep those stories and Diane Goetz Gigi Politoski T Managing Editor: Editorial Manager: comments coming! C Sara Kosowsky Marla Behler, MS, CSW Design Director: Production Manager: Beverly Kirkpatrick Oumaya Abi-Saab Stephanie Knox for the Editorial Board Transplant Recipients Join Together at NKF Annual Meeting in Philadelphia The NKF’s 48th Annual Meeting took that quality of life after transplantation is directly place October 23-25 in Philadelphia, linked to following a medication regimen. Pennsylvania. Transplant recipients, donor A joint council session on “To Write or Not to families and kidney patients joined together to Write? What It Means for Recipients and Donors” share common experiences and learn from each was presented by the transAction and National other. More than 260 members of the transAction Donor Family Councils. Donor Council, National Donor Family families and transplant recipients Council and Patient and Family came together to share their feelings Council attended the program, which about corresponding with each focused on “Taking Control of Your other. Life.” Another highlight of the meeting A meeting highlight included a was an open-mic Coffee House, at dinner symposium held by the which people shared personal transAction Council, “Optimal Drug stories, read poetry and gave Use, Be a Team Player.” Attendees thanks and acknowledgment to participated in an interactive their loved ones and donors. As workshop and tested their knowledge participants shared smiles, tears about current immunosuppressant and embraces with new friends, the options. Janet Karlix, PhD, director bond and energy between patients, of the Clinical Pharmacology Janet Karlix talks about optimal drug use at the recipients and donor families grew Program at the University of Florida, stronger. T was the presenter. She emphasized Annual Meeting. C 2 Transplant Chronicles, Vol. 6, No. 4 race-walker of group one approached transfer Transplant Trotters… station No. 30, where he was supposed to be Continued from page 1 relieved by group two’s first race walker — me. But I was 4.4 miles to the west, at the next organs, including bone marrow and cornea. Our transfer station. How could I have made such a race-walk minute per mile times ranged from 13- mistake, you might ask? It was midnight and I minute miles to 15-minute miles. Guess who was was tired, and I was trying to get to my next the slowest and oldest? It was none other than transfer station to catch a couple hours sleep this author! Our vocations are a teacher, engineer, before I had to get up and run another 4.4 miles. cab driver, construction worker, students and 1 I traveled over 1 2 hours, and as I came to the retirees. Our volunteer, Dave, turned out to be a transfer station, I asked the volunteer if I was at real card and a constant source of strength when station No. 31. He said I was, but he didn’t tell me we needed it. You wouldn’t believe that a group of that this was the west end of leg 31, not the men and women of all ages could converse like beginning! they were family or old friends. Thinking back on it now, though, I feel it was the common bond of Richard Moody, our organizer and captain, is a transplantation that drew us together so quickly. I quiet, 52-year-old grade-school teacher who had similar experiences last year at this same showed true grit and exceptional leadership in the event, as well as at the U.S. Transplant Games, pre-dawn hours of the race. Because of a similar presented by the National Kidney Foundation. mistake by group two last year, Richard was awake and standing at the correct transfer station The Transplant Trotters entered the 1997 Relay when the member of his group was seen Walk in two groups, and I’m proud to say that we approaching the transfer point. When Richard not only finished, but we received a sixth place looked around and didn’t see me (since I was medal in our division. When we first formed that waiting at the next station), he stepped in to take year, the Transplant Trotters decided upon the transfer bracelet from his teammate and several team rules and intentions. The first rule began the next 4.4-mile leg. Just imagine training was that you must be an organ transplant to race-walk two 5.2-mile legs with little or no rest recipient to race. Our primary intention was to in a 24-hour period, and then suddenly finding have fun and celebrate life as a team, and our out you have to do a third leg. Trust me, you are second intention was to finish the race. We out of gas after two legs. So, if any of you harbor entered the race-walk again in August 1998 and any notions that a grade-school teacher isn’t very also added a third intention to our list. We gritty or inspiring, then you haven’t met Richard dedicated the August 1998 race to our original Moody. team founder, Larry Huot, who had passed away in April. In spite of my blunders, the Transplant Trotters finished the race-walk in about 30 hours and During the race, everything went smoothly for placed ninth in our division. We had indeed group one’s two legs of the race, as well as for celebrated life and gladly dedicate our group two’s first leg, but then a transfer problem accomplishment to Larry Huot for helping to get occurred at 5 a.m.