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. on the second day. The last T the Transplant Trotters “on the road.” C

The III Winter World Transplant Games took place January 10-15 in Snowbird, Utah. Athletes from 13 nations competed to determine the world’s best alpine and nordic skiers. More details on these Games will appear in next issue of Chronicles. To view results and audio visual event highlights, visit our website at World Transplant www.kidney.org and click on “Winter World Transplant Games.” Games Federation

Transplant Chronicles, Vol. 6, No. 4 3 Pediatric Transplantation: Back to School Issues by Ira D. Davis, MD S ince many of the technical challenges of the true capabilities and limitations of these transplantation have been overcome, quality of life children. Finally, limited school resources for daily following pediatric transplantation has become the health care services, special services for physical primary focus of health care providers. As a result, or learning disabilities, and homebound school re-entry and improvement of school instruction may also curtail the child’s ability to performance are major considerations of all return to school. individuals who are responsible for a child’s well- being, including parents, physicians, nurses, There are many ways that parents can help ease social workers, psychologists, teachers and school their child’s re-entry into school following officials. This article reviews the issues involved in transplantation. We suggest that you take several children returning to school following organ steps to make the process of school re-entry a transplantation and discusses ways to help positive and satisfying experience. These include: provide your child with a more enriched school re- entry experience. Talk to your child about his or her concerns and fears about going back to school. Successful re-entry into school following transplantation requires preparation on the part of Talk to your child’s teachers and arrange a the child, family, school personnel and classmates. plan for school re-entry that is appropriate for Several issues must be addressed before a child your child. returns to school, including the effects of treatment, social and emotional difficulties, Begin with short periods of school attendance academic difficulties, caregiver attitudes and and slowly increase this time to a full day. school resources. Ask your child’s doctors and The treatment effects of nurses to provide teachers and school transplantation are very important officials with information regarding your and may have an impact on school re- child’s transplant. This information entry. For example, changes in phys- should include a brief description of ical appearance due to medications your child’s medical condition, a may impact a child’s willingness to go description of some of the side effects of back to school. Frequent physician visits and the medications, and a list of symptoms that may school absences can also pose problems with require evaluation by your doctor if they are returning to the classroom. Prolonged absences present. Finally, it is important to inform these from school and changes in body image also often individuals that your child will require frequent result in lower self-esteem and limited interaction doctor visits and may be hospitalized for extended with school peers. Furthermore, young children, periods. such as elementary school students, may avoid a transplant recipient due to a fear of contracting an Request that your school district provide your illness. child with an Individualized Educational Plan (IEP) to allow for special services at school and provide Academic difficulties may also affect a child’s for home tutoring when necessary. These services ability to return to school in a timely manner. are required by law in most states for children Frequent absences may have prevented the child with chronic illnesses, but are not always implem- from building the fundamental knowledge base ented due to school district financial constraints necessary for further learning. Also, learning and a lack of understanding by school officials disabilities may limit academic performance. regarding a child’s overall medical condition.

Attitudes of caregivers are extremely important Following these guidelines and realizing the in optimizing re-entry into school. Parental importance of your child returning to school when overprotectiveness and fear for the child may the time is appropriate will help ensure a T result in absences. School personnel may be successful and healthy academic future. C overwhelmed, uninformed and unable to recognize

4 Transplant Chronicles, Vol. 6, No. 4 Intra-Institutional Donor Exchange by Beverly Kirkpatrick, LSW I n Transplant Chronicles, Vol. 5, No. 4, Cheryl pair would be based on proximity of centers and Jacobs discussed “paired exchange” and “donor the date of listing. swapping” as an alternative to waiting on the The donor could travel to the recipient’s center cadaveric kidney list. Donor exchange is the for the surgery or the donor kidney could be process whereby a person wishes to donate to a transported to the recipient center. The transplant loved one, but can’t because their blood types are procedures would be scheduled on the same date, not compatible. However, he or she may be a with simultaneous start times. There is always candidate to donate to someone else, and will the possibility of either donor breaking the donate a kidney in exchange for that recipient’s agreement to donate or deciding against the loved one (who is in the same situation) donating surgery, which is why transplants would be to his or her loved one. UNOS (United Network of performed on the same day with simultaneous Organ Sharing) has appointed a committee to look injection of donor anesthesia. In this way, there is into the possibility of a nationally based exchange no danger of a recipient or donor being vulnerable program or an intra-institutional (occurring within to a person’s changing his or her mind the transplant institution) living donor exchange unexpectedly. proposal that would involve multiple transplant centers within a UNOS region. This is an idea that has been discussed for many years but only recently has a committee The committee is looking closely at the been formed to investigate the feasibility of such exchange proposal that Francis L. Delmonico, an idea and to develop a plan of how best to put MD, published in a medical journal in August the program in motion. It is hoped that this will 1998. In this proposal, a panel of interested open a door that will shorten the ever-growing list physicians from kidney transplant centers within of individuals that await a kidney transplant. a UNOS region would be assigned to review donor/recipient pairs. The panel would work This information was derived from “Living toward a potential match and review donor/ Unrelated Organ Donation: An Exchange Proposal,” recipient blood types, donor ages and donor/ by Francis L. Delmonico, Jeffrey S. Stoff, Edgar recipient locations. The date of submitting the Milford, William Harmon and Steve Woodie, Graft, T donor/recipient pair for exchange matching would Vol. 3, No. 1, July/August 1998. C be recorded. Final matching by the panel of blood type compatibility of the donor/recipient exchange

incarcerated individual be eligible for a This Issue’s Hot Topic transplant?

Should a system for donor swapping be • It is the privilege of a person on death row to developed on a national level? Why? give back a life for the one he or she took away. An incarcerated individual should definitely not (See above article for information) be eligible for transplant.

What do you think? Call the Hot Topic • I don’t believe a person should be forced to hotline at the NKF, (800) 622-9010 ext. donate—it’s their body. And any human being, 855, to leave your response. whether in prison or not, should have a chance to have a transplanted organ.

Hot Topic Response (Issue 6:3) • I do not believe anyone should be forced to donate organs. I believe incarcerated individuals Following is a sample of responses to the Hot should not be eligible for transplant, and Topic from the last issue: Should an individual taxpayer money should not be spent on people on death row be forced to donate his or her who gave up their privileges by being put into T organs prior to being put to death? Should an jail. C

Transplant Chronicles, Vol. 6, No. 4 5 keeping fit Fun With Exercise by Dave Stanton and Vanessa Underwood, BS, AFAA, ACE

H as the drudgery of pushing yourself out the INDOOR ROCK CLIMBING (ROCK door to jog your daily course got you down? Has GYM): This is a relatively new activity the thought of that 200th aerobics class taken that has followed the popularity of the the hop out of your get-a-long? If you don’t feel extreme sports craze in many cities. motivated to follow your exercise regimen, you Basically, the rock gym consists of might be in a rut. Exercise is essential to keeping many man-made cliffs that you can you and your transplant healthy, and making climb. Each participant rents your routine fun is a great way to assure that rappelling equipment and shoes. You work in you stick with it. Here are some traditional and tandem with a partner who will secure you while more innovative exercise techniques to put the you climb, and vice-versa. It is a pretty wild, yet bounce back into your step. safe, way of exercising your whole body. I highly recommend that weightlifters and swimmers give SPINNING: Spinning is fairly new this a try. I will forewarn you, though, that there in the fitness world. If you enjoy is a moderate cost associated with spending time biking and are looking for a bit and renting equipment in a rock gym. more of a challenge, this could be quite enjoyable. The spinning bike is BODY PUMPING: This challenges specially designed with a weighted the body and the mind as you move wheel in the front. It is stationary, through a series of prechoreo- but the design of the bike makes graphed weightlifting routines the ride quite different from the old stationary covering all major muscle groups bike you’re used to. Spinning classes are from head to toe. The weights will instructor-driven, meaning that the instructor range from two to 10 pounds. Body pumping is a will guide you through your ride. Your instructor great way to learn more about weight training may take you up hills, through valleys and over and proper form. It is also a very good class for mountains! Some classes will stay at a set pace, those who want to have someone lead them while others will change speed and resistance. through a light weight training program usually set to good music. PEAK BAGGING: Peak bagging takes a simple approach to climbing. If these new exercise trends don’t appeal to You just choose a high point that you, you may want to stick to a more traditional you’d like to reach and hike toward sport. However, you can participate in sports in it. You may hike to the top of a tall many ways, including acting as a coach or building, an interesting rock referee. outcropping or, in mountainous areas, any of hundreds of peaks. The exercise is great and the SOCCER REFEREE: Soccer is views from the top are exhilarating. played by more children in this country than any other team sport. KICKBOXING: This is a surefire way Adult volunteers are always needed to to kick yourself into a new exercise act as referees. Soccer is a fairly routine. Kickboxing is a combination of simple game and is easy to learn. Courses are certain kinds of martial arts and taught by organizations such as American Youth boxing. You may use punching bags or Soccer Organization (AYSO) at the regional level move through the air while creating to give you the understanding needed to referee your own resistance. It is extremely aerobic and U-10 (under 10 years old) matches. As a referee, can be as intense as you want it to be. you will get to run for 50 minutes each game, Kickboxing is a great workout for your mind and chase a ball and 20 children around a rather body, and is an especially effective way to relieve large field, teach fair play and have fun. And if 50 stress. minutes is not enough, you have the opportunity to referee older and faster kids for up to 90 minutes. 6 Transplant Chronicles, Vol. 6, No. 4 Tattoos: The Hidden Risks by Marlene McGregory, RN, BSN

T attoos have been gaining popularity over to person and the risk of infection or exposure to recent years, especially with teens. This form of bloodborne viruses is present. Of special concern art has gradually moved from the fringes of is exposure to the hepatitis viruses, particularly society into mainstream America. Although the hepatitis B and C, both of which can result in images created by tattoos may be appealing, chronic infection. The most serious complications there is a potential dark side to this procedure. of chronic hepatitis include cirrhosis, or scarring To apply a tattoo, inks are pushed into the of the liver, and cancer of the liver. People who lower layer of skin to leave a permanent image. have recently gotten tattoos and body piercings People do get tattoos without experiencing any are now turned away as potential blood donors, problems. However, if done incorrectly or nor can they be organ and tissue donors right carelessly, tattooing can be an avenue for away. The Food and Drug Administration requires spreading infection, and there is a strong these people wait at least one year to donate blood association with bloodborne diseases. because of the risk of infectious diseases from unsterilized needles, and many transplant Bleeding during the application of a tattoo is programs also use this one year guideline. common and sterile technique may vary from However, cases may vary. place to place. In states such as Rhode Island, It is important that any person considering a this industry is highly regulated, with yearly tattoo think about this decision. Anyone who inspections by the Department of Health for does decide to get a tattoo should be cautious cleanliness and proper technique. However, and make sure proper procedures are followed to some tattoo artists, especially underground avoid infection. Know that you are directly tattoo artists, may reuse or reseal tattoo kits, or involved in your health care decisions. Education use the same container of ink for more than one and prevention are your greatest defenses customer. They also may fail to advise their against unnecessary exposure to life-long illness. clients about the necessary care to prevent infection. Marlene McGregory is a clinical support specialist in hepatology for Amgen, Inc. She has Having tattoo parties is now popular among nine years of experience in clinical practice at teens who are not of legal age to get a tattoo. both University of Miami and Albert Einstein Usually, homemade kits are passed from person T Medical Center in Philadelphia. C with the kids as you teach them to master a keeping fit sport. continued Having fun is a large part of any workout. Whether you choose one of these activities or not, work at your own pace. Check with your COACHING YOUTH doctor before beginning any new exercise (ANY SPORT): Coaching is not for activity. If you already have been following an the timid. Kids want to run, throw, exercise program as part of your new lifestyle, shoot, hit, block, catch, kick, slide then you should not feel intimidated by any of and dribble, but most of all they the new programs that may be offered. Never want to do it NOW! You must have close doors to new opportunities. Try it - you the endurance and patience to stick with them, might like it! even when you’re dog-tired. The rewards, however, are immeasurable. Teach one child to Dave Stanton received a kidney transplant in perform a skill correctly and you have given him 1987. He is involved in many athletic activities, or her the self-esteem to reach higher. Teach the including climbing, peak bagging and coaching group to work together and support each other soccer. Dave has participated in the U.S. T as a team and you have built a community. And Transplant Games since 1990. C of course, all the while, you will be exercising

Transplant Chronicles, Vol. 6, No. 4 7 Laparascopic Donation: My Experience by Laurie Rosen, MSW

I was not afraid to explore the possibility of back to my first meeting with the surgeon when donating a kidney to my husband. My interest I explained to him that I wanted to have this was sparked when his nephrologist explained surgery to improve my husband’s quality of life, about laparascopic donation surgery and how and I realized I had made the right choice. occasionally non-related donors could be Then the time came for the surgery. We knew compatible with a recipient. Laparascopic in advance that we would have adjoining donation is when four small holes are created in operating rooms. I enjoyed fantasizing that my the donor and a camera and medical equipment surgeon would toss my kidney like a ping pong are inserted to isolate the kidney. Then, a small ball in slow motion to my husband’s surgeon, incision is made into the donor and the kidney who would toss it into my husband. That was is removed through this cut. my way of coping with a very serious situation. I had already experienced laparascopic I also joked that my husband would start to eat surgery several years ago. I recalled that the broccoli like I do! The night before surgery, we hospital stay was brief, my recovery was fast, stayed overnight near the hospital so we would and surgical scars were very small. My husband not feel rushed in the morning. The next day, also had his gall bladder removed by we had our surgery. The transplant started laparascopic surgery, working right away. My and he, too, had a good stay in the hospital was experience. These earlier three days. Five days experiences helped to after my hospital stay, shape my thinking and I used city transporta- make my decision. tion to go out and do some shopping. I drove When I first a car on the seventh day announced to my out and returned to husband that I wanted to work two weeks after be evaluated to be his the transplant. I had kidney donor, he some soreness for a objected. He tried to while and moved a little dissuade me in order to slower than usual for a protect me from being couple of weeks, but I hurt. He was also afraid am back to normal now. to get his hopes up and Laurie and Stan enjoy the life that transplantation made possible. My husband and I are then be disappointed. I both doing well. explained that there was nothing to lose by being tested, and we began I am an advocate of laparascopic donation. the testing process. The transplant coordinator The process is much less invasive than other was respectful of our demanding work schedules methods of transplantation. I expect this type of and of the 45-mile drive to the hospital. She surgery will make living donation of kidneys accommodated our needs by arranging multiple more desirable and less stressful for many tests and consults for us on the same day individuals. The benefits were immeasurable. whenever possible. The process of kidney donation and transplant gave my husband a second chance. And we both We completed the evaluation process and received an unexpected gift—a closeness found out the results a few weeks later. It was developed between us as we struggled and against the odds, but we were a match! I got the survived together. news first. I was astonished, relieved, and felt like I was flying. I had not felt so optimistic for a Laurie Rosen, MSW, is a psychoanalyst and T long time. How fortunate we were! My husband clinical social worker in Commack, New York. C would not have to wait on a long list. I thought

8 Transplant Chronicles, Vol. 6, No. 4 Transplant News Digest

From the editors of Transplant News

Commentary: One-Year Moratorium on Implementation of HHS OPTN Regulation - Who Won, Who Lost May Prove To Be Deceptive by Jim Warren, editor and publisher

This is a fine mess you’ve gotten us into this states time to lobby Congress to block time, Ollie. - Laurel and Hardy implementation of allocating organs on the basis When Congress agreed to a one-year of medical priority, not geography. moratorium last October on implementation of The Institute of Medicine—The IOM gets federal regulation of the Organ Procurement and money and time to do yet another study of Transplantation Network (OPTN), conventional transplantation policy in the U.S. No disrespect wisdom suggested that the United Network for toward the IOM is intended, but does anyone Organ Sharing had won. UNOS has spearheaded really believe it will recommend that decisions in the fight to resist the regulation, which would setting organ allocation policies be left strictly to allocate organs on the basis of medical need, the transplant community and that states’ rights rather than geographic location. supercede federal agencies’ ability to regulate? If UNOS won, then conventional wisdom Small transplant centers—Good small centers would also say someone had to lose. Let’s take a will survive regardless of the allocation policy. look at who the big winners and big losers just Those with poorer outcomes and/or an inability might be in this latest round of public to continue to operate on a financially sound confrontation over who sets organ allocation basis will fail no matter who controls the policy in the U.S. policymaking. Winners: Losers: UNOS (at least in the short run)—In public Patients on the waiting list—This is a no- testimony before Congress, the organization brainer. Forget the rhetoric from both sides of the professed eagerness to seek rapprochement with dispute saying their only interest is in what is the Department of Health and Human Services best for the people in need of a transplant, or (HHS), which would regulate the network. UNOS’ dueling computer models showing which actions tell another story, however. How else can allocation system would result in the most you explain its decision to join the Louisiana transplants. Patients are losing because the lawsuit against HHS seeking to prevent highly publicized nature of the debate has to be implementation of the regulation? In reality, the dampening the U.S. public’s willingness to moratorium buys UNOS time to seek relief from donate organs. People do not trust the system the regulation through legislation, which could and, according to several opinion polls, that is be introduced in Congress this year. the major reason why people who should donate American Society of Transplant Surgeons— do not. When newspaper headlines and wire The ASTS and its immediate past president Ron service stories trumpet one organization’s victory Ferguson, MD, led the transplant community in organ allocation, every ounce of common effort to retain the current UNOS system of sense says it must be hurting donation. Like it or organ allocation. Ferguson worked tirelessly to not, perception is reality! defend the status quo and retain the private Organ procurement organizations (OPOs), sector’s authority to develop public policy with tissue banks, eye banks—This should be a time little or no oversight by HHS. of optimism for increasing donation, given the Louisiana, Oklahoma, South Carolina, recently implemented Medicare Conditions of Wisconsin—These four states have passed laws Participation that require all U.S. hospitals to mandating that organs be offered first to their notify their local OPO of all deaths and imminent own citizens regardless of their status on the deaths. However, OPOs find themselves in the waiting list. The moratorium also allows these middle of a no-win situation regarding the HHS

Transplant Chronicles, Vol. 6, No. 4 9 regulation. They are funded by the government, The reality is that the fight over setting organ beholden to local hospitals to sign agreements to allocation policy has never been completely about provide organs and tissues, and often seen by the what is best for patients. It is about power and public as co-conspirators in the allocation money. It’s about big centers versus little centers. controversy. The Association of Organ It’s about states’ rights versus federal rights. It’s Procurement Organizations (AOPO) has wisely about who should have the authority to set policy: declined to take sides during the dispute. That physicians who treat the patients or the action alone reveals its precarious position in the government agency in charge of oversight. And it’s policy debate. OPO’s have been unfairly used as going to go on for at least another year if not the scapegoat for the failure to increase the longer unless the transplant community demands number of organs over the past five years. That that its leadership—individuals and organizations seems certain to continue for at least another year. —call a halt to the bitter public fight. The Coalition on Donation and the federal Senator Bill Frist (R-TN), chairing a joint initiative to increase organ and tissue donation— hearing on the allocation controversy of the How can the Coalition possibly wage a successful Senate Labor and Human Resources Committee public education campaign about the importance and the House Subcommittee on Health and the of being an organ and tissue donor in light of the Environment in June, observed that new negative public debate? Incredibly, the fiscal year developments in organ preservation techniques ’99 $10 million appropriation to the Health “make sharing of organs easier and changes must Resources and Services Administration, which is be made to reflect these changes.” He also to be used to increase organ and tissue donation, expressed his own fear that “the heavy hand of could be wasted if the situation is not resolved government is going to come down” if UNOS and amicably. HHS can’t resolve their differences. Congressional support—Gaining the backing of Despite the one-year moratorium, which will Congress for other issues extremely important to allow time for legislation to be introduced next the transplant community, such as increased year, and the Louisiana lawsuit, does anyone support for basic research and unlimited really believe that organ allocation policy in the insurance coverage of immunosuppressive drugs, U.S won’t be set by the federal government in has been difficult without the current problems. consultation with the private sector? Until the Doing away with the allocation controversy would situation is resolved, there will be no winners. allow the transplant community to develop the cohesive legislative effort necessary to move Laboratory-grown hearts for transplant seen transplantation forward in the 21st century. The in next decade shortage of organs and tissues will ultimately be A research project focused on using laboratory- eliminated through medical and scientific grown tissue to create hearts suitable for breakthroughs, not doubling the number of transplant within the next decade has been donors. launched by a group of scientists. The sad thing is that it didn’t have to come to “Our vision is that we’ll be able to pop out a this. Both sides had publicly indicated willingness damaged heart and replace it as easily as you to compromise in the past few months. Claude would replace a carburetor in a car,” said Earl Fox, MD, director of the Health Resources Professor Michael Sefton of the Institute of and Services Administration, has said the Biomedical Engineering at Toronto University. department is not looking for UNOS to develop a policy requiring a national waiting list. “We’ve Earlier this year, Sefton and a group of 12 other never said that we want livers to be shipped coast scientists, engineers and clinicians from North to coast. I think that’s a misconception,” he told America and Europe formed a partnership to Transplant News. UNOS President William Pfaff, examine biomedical solutions to the global MD, testified before a Senate committee last shortage of organs for transplantation. The team September that “we’re in collaboration with the developed a plan that uses tissue engineering department from the get-go . . . The Secretary has techniques to create living replacement organs. oversight responsibilities. I’m a little surprised that The project, known as the Living Implants from we’ve come to this tenor of thought where we’re Engineering (LIFE) initiative, eventually will lead not collaborating, and it’s time to do that.” to a number of organ replacements. Initially, however, it will concentrate on the heart.

10 Transplant Chronicles, Vol. 6, No. 4 “In order to ‘grow’ a heart, we first need to Pediatric transplant recipient donates heart ‘grow’ a heart valve,” said Sefton. The creation of to five-month-old girl after he dies transplantable valves would substantially reduce the high risks of heart valve surgery, he said. In what may be the first case of a pediatric transplant recipient becoming an organ donor, a Tissue engineering combines biotechnology and 10-month-old liver and bowel recipient donated bioengineering strategies to create a new his heart to a five-month-old girl when he died. generation of materials or devices. Some engineered tissues already are on the market, but Joey Bullock, who was born with gastroschesis, other tissues, such as cardiac muscle, have been a condition where the intestines are exposed difficult to reproduce. At the present time, because of a hole in his abdomen, received his scientists use one of two approaches in tissue life-extending transplant several months ago at engineering. The first involves growing cells in a the Nebraska Health System University in culture and planting them on a material in the Omaha. He had been scheduled to go home to body, bone or skin substitutes, for example. In Lancaster, Texas, when he died from the second approach, material is implanted in the complications of a cold. Death was not related to body to precipitate a specific response, such as his transplant. tissue regeneration used to induce new blood Joey’s heart was flown from Omaha to Denver, vessel formation. where a five-month-old girl from Washington Technique for storing organs 10 times longer State received the donor heart. than normal developed by Japanese scientists UK government advisors approve cloning human embryos for organs, tissues to treat Borrowing a trick from a tiny bug, Japanese disease scientists have developed a technique for storing organs that could transform the transplant In a move certain to cause controversy, UK industry. The bug, called a tardigrade, uses a government advisors have given their approval to sugar called trehalose to survive in extreme the cloning of human embryos for the purpose of conditions. When scientists at Kanagawa developing new treatments based on cloned tissue University in Japan used the sugar to store rat and organs. The recommendation appears in a hearts, they found the organs could be revived joint report from the Human Genetics Advisory after 10 days in storage—10 times longer than Commission (HGAC) and the Human Fertilisation normal. and Embryology Authority (HFEA). Last January, HGAC predicted that, in a matter of years, human Using current methods, the longest human embryo cloning would lead to novel treatments for organs can be stored is up to 30 hours; for livers a variety of injuries and diseases. and hearts, maximum storage time is only about four hours. If donated organs could be stored for “Cell nucleus replacement techniques might be longer periods of time, it could eliminate the helpful with research into—and eventually frantic rush to get patients on transplant waiting treatment of—conditions such as Parkinson’s, lists into the operating room. It also could lead to Huntington’s, Alzheimer’s and various types of better matches between donors and recipients. cancer,” said Sir Colin Campbell, HGAC chairman. “Treatments might also be developed The main problem with keeping organs in cold for diseased or damaged tissue. This would entail storage is that water at low temperatures growing cells of tissue in culture and not involve damages cell membranes, and removing water human reproductive cloning.” Campbell added from the tissues usually causes at least as much that although such applications still are years damage. To overcome this problem, the away, the advisors did not feel it would “be right researchers flushed the rat hearts with a at this stage to rule out limited research using trehalose solution, then packed them in silica gel such techniques, which could be of great benefit to remove water from the cells. The hearts then to seriously ill people.” were immersed in perfluocarbon, a biologically inert compound, and stored in airtight jars at four Under the 1990 Human Fertilisation and degrees C (39.2 F). After 10 days in storage, there Embryology Act, embryos less than 14 days old appeared to be no damage to the heart cells. may be used for specific research purposes, such as promoting advances in the treatment of The researchers plan to test the technique on fertility, increasing knowledge about the causes of other animal organs and hope that it can be used congenital disease and developing methods for for preserving human organs in a few years.

Transplant Chronicles, Vol. 6, No. 4 11 detecting genetic abnormalities. The old law does 60 heart transplant patients conducted by the not, however, permit research aimed at international Photopheresis Transplantation Study developing new forms of replacement tissue. Group that appeared in the December 10 issue of the New England Journal of Medicine. To separate the issue of reproductive cloning from so-called therapeutic cloning, the report The photopheresis procedure involves removing recommends that the government introduce a sample of the patient’s T-cells—cells that play a legislation banning human reproductive cloning. key role in graft rejection—and exposing them to Another suggestion is that Health Secretary ultraviolet A light and the chemical methoxsalen. Frank Dobson consider changing current This treatment causes the T-cells to develop what regulations, so that HFEA can issue licenses for the researchers call a lethal defect. Shortly after the development of therapeutic treatments for the cells are reinfused into the patient, they begin diseased or damaged tissues or organs. The to die. And like all dying cells, the treated T-cells report also advises that these issues be examined are recognized as waste and engulfed by other again in five years to take into account scientific immune cells, which learn to target healthy T-cells developments and the public’s attitudes toward as well. The net result is a decrease in the overall them. number of T-cells, thereby reducing rejection risk. First child in U.S. to receive heart, two lungs Comparing six-month outcomes of 33 heart and liver transplant, performed in Pittsburgh transplant patients treated with immuno- suppressive drugs plus photopheresis with 27 The University of Pittsburgh Medical Center patients receiving immunosuppressants alone, revealed in early December that surgeons had “the likelihood that a patient would have no performed the first heart, both lung and liver rejection episodes in the photopheresis group was transplant in a child ever performed in the U.S. 2.1 times that of the standard therapy group,” The surgery was performed on three-year-old said lead investigator Mark Barr, MD, of the Brendon Ednie at Children’s Hospital of University of Southern California, Los Angeles. Pittsburgh in August, but it was not announced Thirteen of the photopheresis patients had no until December 12 because they wanted to make rejection episodes compared to just five of the sure Brendon has a good chance for survival. drugs-only group. Physicians said only a handful of adults have The research team emphasized that larger, undergone the 20-hour procedure worldwide. longer-term studies will be needed to confirm the The United Network for Organ Sharing (UNOS) effectiveness of the technique. Nonetheless, they told the press that a heart, lungs, liver transplant suggest that “photopheresis is a mildly invasive had only been done once in the U.S., in an adult treatment without important toxic effects [that] in 1996. Davina Thompson reportedly was the appears to lower the rates of acute rejection in T world’s first recipient of a similar operation in recipients of cardiac transplants.” C 1986 in the United Kingdom. Thompson died in August this year at the age of 47. Brendon had waited 10 months for the organs. He suffered from Lagille Syndrome—a rare genetic disorder that has only been diagnosed in about 100 people worldwide. “TAKING CONTROL OF YOUR LIFE” Photopheresis may reduce risk of heart transplant rejection A one-day educational program for Photopheresis, a process in which white blood transplant recipients of all organs cells are reinfused after exposure to a photoactive and their families compound and ultraviolet light, may reduce the risk of acute rejection in cardiac transplant recipients. When used in combination with Scottsdale, Arizona standard triple-drug immunosuppressive Saturday, July 24, 1999 therapy, photopheresis significantly decreased the risk of cardiac rejection without increasing Please call the National Kidney Foundation for the incidence of infection, according to a study of further information (800-622-9010).

12 Transplant Chronicles, Vol. 6, No. 4 eating right

Don’t “Wait” to Start Managing Your “Weight” by Becky Weseman, RD, CNSD, LMNT O besity is a growing problem—no joke work! Remember, though, that being too thin intended! Nearly one third of adult Americans are with a BMI that is too low also has health risks. obese, and transplant recipients are no exception. Therefore, maintaining a healthy weight is very Weight gain is a complex issue that may be important. influenced by family history, how you metabolize or burn foods as energy, and how much you Getting Started: There are some things exercise. Many people have “triggers” that affect you can control and others that you can’t. If your weight gain, such as stress, depression or being weight is partially due to family history and how overtired, all of which cause them to overeat. Not your body breaks down food, it may be more only do transplant recipients have these reasons difficult to change your body size. If medications to overeat and gain weight, but a new set of you take cannot be changed, this is out of your issues may arise following transplantation. control as well. However, we can all control our diets and exercise. If you have ever tried a “fad” It has been reported that anti-rejection diet, you have probably figured out that it didn’t medications, such as steroids, can cause a false produce long-term results. The new approach to sense of hunger that often leads to overeating. In looking at our diets is actually to eat more, not addition, freedom from pre-transplant diet less! restrictions and an improved sense of well-being Research is currently being conducted on may also lead to weight gain after recovery from ways to help you lose weight by feeling full. The surgery. Does any of this sound familiar to you? key to eating healthy and until you feel full If so, now is the time to take charge of your centers on your food choices. Selecting foods weight and habits! that are lower in calories and still high in Weight Assessment: Do you wonder how nutrient content allows you to eat until you are your weight sizes up? You can figure out your full, while still maintaining a healthy BMI. The body mass index (BMI) quickly and easily: false sense of hunger that can result from anti- rejection steroids might be easier to cope with if you could still eat until you were full, without Body Mass Index = kg/m2 worrying about excessive weight gain. Try following these guidelines: kg = weight in pounds divided by 2.2 1. Select fewer high-calorie foods. For m = height in inches x 2.54 divided by 100 example, choose apples instead of apple pie. 2. Fill up on nutrient-dense vegetables, such For example, a 5 foot 4 inch woman who as broccoli, asparagus or green beans, with your weighs 140 would do the following: meals, which add bulk, not to mention fiber and 64 inches x 2.54 divided by 100 = 1.625 m vitamins. 140 pounds divided by 2.2 = 63.6 kg 3. Enjoy a warm cup of broth-based soup before a meal or a hot beverage, such as apple 63.6 / 1.625 x 1.625 = 24 BMI cider or low-calorie hot chocolate, after a meal. 4. Be careful not to select foods just because A body mass index of 25 to 29.9 is considered they are low in fat. Remember that you also overweight, while a BMI of 30 to 39.9 is have to pay attention to calories. considered obese. If you have a BMI over 25, it may be time to take action. Being overweight can Your weight doesn’t just affect the way you lead to health risks of high blood pressure, heart look—it has a great impact on your health and disease and increased blood sugars. Excessive the way you feel. If you continually balance weight gain can also limit your activity and affect foods eaten and calories burned, you’ll be on your ability to carry out your daily routine with your way to maintaining a healthy weight for ease. If your BMI is 21 to 25, keep up the good T life. C Transplant Chronicles, Vol. 6, No. 4 13 medical beat “Boning Up” on Bone Disease by R. Patrick Wood, MD

With results continually improving in heart, problems up to a year after transplantation. After liver, kidney and lung transplantation, it is no the first year, most patients are on lower doses of longer acceptable to view survival as the most anti-rejection drugs (especially steroids) and their important outcome for a transplant patient. We bones actually become stronger. must also focus on the quality of patient survival as an important factor in the success of Post-menopausal women and men who have transplantation. One such factor in the quality of inadequate testosterone levels appear to be at the survival is the presence of bone disease, which greatest risk of developing fractures following can greatly impact a patient’s capacity for transplantation, but other factors also increase a rehabilitation. patient’s risk. These factors include the amount of anti-rejection medicines the patient needs to Bone disease, a problem that often goes prevent rejection, the number of rejection episodes unrecognized and untreated, can lead to severe (especially those rejection episodes treated with health problems both before and after high-dose steroids) and the patient’s nutritional transplantation. Patients with cardiac, liver, renal status and level of activity. Even individuals who and lung disease often experience bone loss seem to have normal bones before transplantation (osteoporosis) prior to transplant for a variety of may develop fractures in the first three to six reasons, including their nutritional and hormonal months after transplantation. status. Specifically, patients who are malnour- ished may develop bone disease from inadequate According to the available data, it seems that intake of calcium and vitamins, namely vitamins the best way to prevent bone problems following A and D. Those patients who cannot walk or who transplantation is by taking an aggressive become bedridden because of the severity of their approach before the transplant. All patients disease will experience a rapid loss of calcium awaiting transplantation should be evaluated with from their bones, thus weakening the bones and x-rays of their spine; bone density studies; thyroid increasing the risk of developing a fracture. function tests; and serum calcium, magnesium, Significant bone loss results in a substantial risk phosphorus and vitamin D level tests, as well as of fractures, especially of the spinal column and tests for the levels of parathyroid hormone, hips. It is likely that a significant number of testosterone levels (in males) and estraidiol levels transplant patients have compromised bone in females. Abnormalities in any of these tests strength before the transplant and may be at should be treated before the transplant, if great risk of developing fractures. possible. Also, patients should attempt to remain as active as possible in order to avoid the bone Many patients will experience a greater loss that happens due to inactivity. weakening of their bones following transplant. The commonly used anti-rejection medicines, Following transplantation, all transplant centers including the steroids cyclosporine and attempt to keep the levels of anti-rejection tacrolimus, are all associated with the medicines as low as possible, which helps to lower development of bone disease. This is an especially the risk of bone disease. In addition, a variety of well known complication of the use of steroids drugs have been used to prevent bone loss in like prednisone. The incidence of fracture in transplant patients. Most transplant programs are transplant patients ranges from eight to 65 encouraging the use of calcium supplements and percent in the first year following transplantation. appropriate hormonal replacement in certain In general, the fracture rates are lowest in kidney patients. New drugs such as calcitonin and recipients and highest in patients who receive biphosphonates have been beneficial in preventing liver transplants for cholestatic liver diseases like bone loss in some studies, but have not yet primary biliary cirrhosis. A number of studies proven to be effective in all transplant patients. have pointed out that bone loss and fracture risks One interesting study in heart transplant patients are greatest in the first three months after transplant, but continue to be significant

14 Transplant Chronicles, Vol. 6, No. 4 ask the pharmacist Can Smoking Affect My Transplant? by Janet Karlix, PhD

S ince the mid-1960s, there has been an inc- he is relieved to be able to go outside and smoke. rease in information that convincingly describes Three days later, his cyclosporine level is too low — the health hazards of smoking. Numerous it has slowly drifted down to a subtherapeutic research papers have been published documen- range. ting that cigarette smoking can cause cancer and lung complications, as well as contribute to What happened? This case is a classic example many other diseases. Ad campaigns have of how cigarette smoke can cause an interaction dramatically emphasized the negative effects of with a drug that is broken down by the liver, such smoking on the skin and lungs. And tobacco as cyclosporine. This scenario is not uncommon companies have been in the spotlight as in the transplant ward. When Jack started individuals and state governments sue to force smoking after his surgery, it caused his liver’s them to take responsibility for selling an metabolism to increase, which consequently addictive and health-compromising agent. As resulted in a decrease in his cyclosporine level. unhealthy as smoking is for the general population, it is important to realize that it can Cigarette smoke can change the levels of many have even more significant consequences for the drugs, including cyclosporine and tacrolimus. health of a transplant patient. Ideally, if you smoke, you should quit. However, if you do intend to keep smoking, be consistent. One of the most interesting aspects of cigarette Increasing or decreasing the amount of your smoke is its ability to affect the liver, thereby smoking can potentially change your cyclosporine also affecting anti-rejection drug levels. At least or tacrolimus levels, which are important in main- one of the byproducts of cigarette smoke can taining the function of your transplanted organ. cause the liver to “rev up.” If a drug is broken down by the liver, a “speedy” liver can cause the There are many support groups and resources drug to be broken down much quicker, which to help you quit smoking. Ask your transplant would result in decreased drug levels. center for help locating these aids. Also, most health care professionals are knowledgeable about Here’s a case that shows the dangers of the benefits of over-the-counter nicotine smoking and how it affects a transplanted organ: supplements, which can assist in decreasing the irritability and other physiological nicotine Jack Jones had a kidney transplant three days withdrawal symptoms you may experience. You ago. His cyclosporine level is in the desired range have a second chance at life. Why compromise it and is stable. He has been given permission to T by smoking? C leave the transplant floor in his daily walks, and

medical beat continued

did show that early progressive resistance exercise At least some degree of bone disease is almost reversed bone abnormalities within the first six universal in patients both before and after organ months after transplantation. It would therefore transplantation. It is hoped that newer drugs will seem reasonable that transplant patients should be available in the future to treat this common be encouraged to exercise as much as they can, problem. Addressing bone disease is an important especially while on higher doses of anti-rejection consideration in improving the quality of T medications. transplant patients’ lives. C

Transplant Chronicles, Vol. 6, No. 4 15 Being an Effective Advocate by Charlie Thomas, ACSW, CISW T aking your medications, sticking to your example, the NKF Office of Scientific & Public diet and exercising are essential to maintaining Policy, aided by grassroots support from the health of your transplanted organ, but your individual recipients, has worked to enlist well-being as a transplant recipient depends on congressional support for the elimination of the much more. There must also be legislative and 36-month limitation for Medicare coverage of public policies in effect that support programs to immuno-suppressive drugs for transplant keep you healthy, and you play a key role in recipients. The Immunosuppressive Drugs making sure these policies exist. It is very impor- Coverage Act of 1997 was introduced by tant that transplant patients and their families Congressman Canady (R-FL) and Senator become advocates for their health. DeWine (R-OH) to eliminate the limitation for certain kidney transplant recipients. While Advocacy involves direct and indirect methods Congress did not act on these measures prior to of securing and defending your rights as a the end of the legislative session, the Public recipient, including educating community Policy Office worked very closely with agencies and legislators on the needs of recipients congressional staff and so services can be made there is every reason to available to you. A believe that the positive way to influence legislation will be policy is to join and reintroduced in the become active in 106th Congress. transplant support groups. The leaders of the You can also become support groups should involved in public policy form coalitions with other advocacy efforts through support groups and grassroots organizations identify common issues. in your local area. For Legislative advocacy example, the Arizona training should be Members of the Arizona Public Policy Forum on Public Policy Forum on conducted for coalition Transplantation watch as Governor Jane Hull Transplantation (APPFT) members. (Arizona) signs a bill creating a medication is a grassroots transplant recipient organization that Effective advocacy is program for transplant recipients. achieved a major victory defined in large measure for all transplant recipients in the state of by how a person communicates with legislators Arizona in 1998. A House bill was introduced to on a specific issue. There are many different create a “safety net” medication program for ways to influence legislators, but a good first qualifying transplant recipients in Arizona. The step is to get acquainted with them. Most program was modeled after the NKF of Arizona legislators will be interested in hearing your renal medication program. The new bill would views on an issue that affects you personally. appropriate $200,000 from state tobacco tax Here are some ways to build a relationship with revenues to create a similar option for non-renal legislators: transplant recipients. The bill unanimously Attend a town hall meeting and introduce passed both the House and Senate and was yourself as a constituent. signed into law. Schedule a group meeting (maybe with your Writing letters, calling your representatives, transplant support group or coalition) with a testifying at hearings and educating the media lawmaker in his or her office. are all proven methods of advocacy. If you’d like Invite the lawmaker to speak at a meeting at to get involved or want more information on your transplant center. advocacy efforts, call the Public Policy Office at Appealing to local, state and federal (800) 889-9559, or find out about local committees can help ensure that programs, grassroots organizations from your transplant monies and access to services include transplant center, local NKF affiliate or organ procurement T recipients instead of excluding them. For organization. C

16 Transplant Chronicles, Vol. 6, No. 4 Between Donor Families & Recipients

Thoughts from a Donor... Thoughts from a Recipient...

I lost my husband in July 1996 due to a Dear Donor Family, horseback-riding accident. The accident Your daughter lives in the hearts, souls and happened on a Saturday night, and in less than body of our family. As a mother of five children, I 48 hours, he was declared brain dead. I was have often thought of love as a rubber band...it asked to let him be an organ donor and my first always stretches to hold more. Awesome is the response was no. But then I thought it over and word of choice to describe our gratitude. We may knew that something good had to come from his not have known Nicole, but now we sure feel her death. This may sound strange, but I just presence and love in our lives. There are no couldn’t bear for his heart to stop beating. He words I know to thank you for the life you have had such a “big heart,” I felt as long as it was given my daughter, Lisa. beating that part of him was still alive. Lisa’s story is filled with courage, faith and For me, the decision to donate was one of the hope. She is a single mom of a two-year-old best decisions I’ve ever made. I haven’t been daughter named Taylor Rose. Her story is contacted by any recipients, except one young lengthy and I hope some day to share it with man in Wisconsin who received a kidney about you, our donor family. Your daughter’s kidney how it has saved and changed his life. It was adds so much to Lisa’s life, especially the hours such a blessing when he contacted me. I’d love spent with her young daughter—you have made to someday meet all the recipients who, by my this possible. We are open to sharing our lives loss, have a better and healthier life. with you since we now call you “family.” My husband was only 45 years old when he died, and I miss him so very much. But I know Above all, in our joy, we share so deeply in that I made the right choice and I’m glad I did. your loss. Not a day goes by that my heart doesn’t feel such pain as I think of walking in Carolyn Rowe your shoes. As our Taylor Rose opens her gifts this holiday season, little does she know that the greatest gift was received by her mom. You wrapped it so beautifully with all your love. We wish to share our lives with you as a living testimony to your daughter. And most of all, we wish you peace, love and serenity. Congratulations! Joan Reardon Barbara Plock of Tecumseh, This letter was written in December 1997. Since then, the Reardons have made contact with their Michigan is donor family and dedicated a square on the National Donor Family Quilt to Nicole. recognized at a ceremony for Editor’s Note: The NKF has developed communication guidelines for health care the 31st professionals to help donor families and recipients communicate with each other. For more anniversary of information, call the NKF at (800) 622-9010 or her transplant. view the guidelines on the NKF Website at T www.kidney.org. C She celebrated the 32nd in December.

Transplant Chronicles, Vol. 6, No. 4 17 Exploring the World Wide Web on the Internet by Gary Green

T he Internet is considered one of the most the Internet and software that allows the important developments of the late 20th century computer to connect to the Web: because of the possibilities it has for educating • Many of you may already have a computer. and connecting people all over the world. It is If it has a modem or is part of a network that estimated that in five years, over one billion allows it to connect to the Internet, then you citizens on this planet will have access to the have all that you need. If you don’t have a com- Internet. It is unquestionably one of the most puter, call your local public library—many have important developments ever in human computers with Internet access for public use. communication. This article is intended to Also, there are now coffee shops and stores that provide you with basic information about using provide Internet access for a small fee per hour. the resources of the World Wide Web available on the Internet. • Access is provided by an Internet Service Provider (ISP), a company or other entity that What exactly is the Internet? It is a network you use to connect to the Internet, such as of computers, large and small, that stretches to AT&T WorldNet, UUNet, Earthlink, America every corner of the world. It is as near or as far Online, Netcom, etc. The ISP will provide you as the closest computer with the necessary with instructions for using its service. software and hardware. Any computer with access • The necessary to the Internet is actually software for accessing the part of the Internet—it is Web is at least a “browser,” not just the routers, which, as its name implies, cables and connection allows you to browse the that carry information. Web and usually includes an e-mail program so that So then what is the you can send and receive World Wide Web? messages. Sometimes both According to the World of these functions are Wide Web Consortium integrated into one (http://www.w3.org— software package. The more on what this means most popular browsers in later), “the World Wide use today are Netscape Web (known as ‘WWW,’ Navigator version 4.5, and ‘Web’ or ‘W3’) is the Microsoft Internet Explorer universe of network- version 4.0. Both are accessible information, the embodiment of available for free. Alternatively, the software that human knowledge.” So the word “Internet” refers you need may come from your Internet Service to the computers and the connections, while the Provider, as is the case with America Online. phrase “World Wide Web” refers to the information available via the Internet. You’re almost ready to go. The only thing left is to become familiar with a few more terms so Electronic mail (e-mail) is the application that that you will be able to find your way around. drove the development of the Internet to what it Remember the strange-looking computer lingo a is today. For many “wired” individuals, e-mail while ago—http://www.w3.org? This is an has almost replaced all other forms of Internet address and is called a Uniform communication. In addition to written Resource Locator (URL). It has several parts communications, “chats” are possible on the that are separated by punctuation and symbols. Internet, and, recently, audio and video conversations have become possible. So, now you’re all set! To begin your Internet travels, start your browser (or if you’re on The most common use of the Internet is to America Online or a similar service, click on access the World Wide Web. To explore the Web, your connection to the Internet). It should open three things are needed: a computer, access to

18 Transplant Chronicles, Vol. 6, No. 4 to a webpage that is set as the default or home The transAction Council’s page at the page (you can set this to be any page on the National Kidney Foundation’s Website. Go to Internet that you want). To go to another page http://www.kidney.org and click on “Transplant on the Web, either click in the address bar (or Recipients and Donors”. This site provides up-to- location bar) and type the URL of the page that date information on issues in transplantation, you would like to retrieve (followed by the Enter including medical and government relations key), or if you see a link on the page, you can updates and the latest on transplant athletics just click on it to go to that site. programs, as well as transAction Council events and meetings. Before you start exploring transplantation on the World Wide Web, you might want to learn a bit TransWeb (http://www.transweb.org). This more about the Internet and the Web. An excel- comprehensive site offers a tremendous amount lent beginner tutorial on these subjects can be of useful information and related links for found at http://www.northernwebs.com/bc. recipients. Another good site for beginners is Microsoft’s United Network for Organ Sharing guide to the Internet at http://www.microsoft.com (http://www.unos.org). The official site of UNOS, /magazine/guides/internet/default.htm. For these pages contain data and statistics on organ definitions, terms and phrases on these subjects, donation and transplantation in the U.S., help is available at http://www.whatis.com. information for patients, and a comprehensive Now, where should you go? You can find list of links to transplant centers that have a hundreds of references to sites regarding website. transplantation if you use a search engine, a The Coalition on Donation program that indexes the pages on the Web and (http://www.shareyourlife.org/) has information can guide you in finding information. Some of on organ donation as well as related links. the most popular are: Yahoo! (www.yahoo.com), Excite (www.excite.com) and Hotbot We’re also here to help! If you have questions (www.hotbot.com). Each engine works a little about any of these subjects or would like differently, so the best approach is to select one additional information, you can e-mail us at and read the online help to guide you in your [email protected]. We’ll be happy to help search. you on your Internet journey! Following are a few sites that you should be Gary Green, Director of Informatics, works on aware of: the NKF’s cyberNephrology project, a collaborative effort with the University of Alberta in Edmonton, T Alberta, Canada. C

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Transplant Chronicles, Vol. 6, No. 4 19 This drawing hangs in the hall at Children’s Hospital in Boston, MA, and sums up how many i d s kids feel about transplantation. Ko r n e r

The National Kidney Foundation recognizes the significant contributions made by Novartis Pharmaceuticals Corporation to transplant recipients around the country through its sponsorship of the following NKF programs: The 1998 U.S. Transplant Games; Team USA to the World Transplant Games; Transplant Chronicles; and transAction Council programs.

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