Transplant Chronicles

Volume 6 A publication for transplant recipients of all organs and their families, Number 2 published by the National Kidney Foundation, Inc. Crossing the Finish Line by Jennifer Kinlund y ordeal started when I During the seventh grade, I wasM only 18 months old, with a was ready to begin an active flu virus I picked up on a life in the world of sports, but family vacation. After a few that was not to be. The doctor days I was still not getting who did my sports physical better and was brought to the informed me that I did not pass hospital. I was given fluids the physical due to a high through an I-V because I was protein level in my urine. I dehydrated. The nursing staff headed back to the Mayo Clinic did not do an adequate job of and found that I would need a monitoring the fluid, which transplant unless my kidney lead my kidneys to shut down. function stopped declining. My kidney function did not But the next few years showed return and therefore, I had to continued deterioration. I be put on dialysis. Luck was began a trial with prednisone, again not with me; part of the which did not help. So equipment needed for my throughout the next few years, dialysis treatment had to be I was on a restricted diet, and flown in from California, and it added routine blood pressure ended up in Washington. With checks and medicine to my surgery already scheduled, the daily routine. doctors had to use an adult piece to get the dialysis started, My senior year was the most as my body was beginning to Jennifer Kinlund (right) races her way to recovery difficult, as my kidney function shut down. Several weeks and a successful college track career. went down to about 15 percent. after the surgery, I was taken My energy level was also getting home. The doctors told my off dialysis and my kidney lower, and even simple things parents that I would be fine, but function slowly returned. Six like getting to class became a in actuality my future had been weeks after I had entered the struggle. We scheduled the altered. hospital, I was able to return 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

This issue of Transplant Transplant Chronicles is published by Chronicles is dedicated to the theme the National Kidney Foundation, Inc. “Taking Control of Your Life.” When Opinions expressed in this publication do not necessarily represent the position of the National Kidney Foundation, Inc. a chronic illness hits you, much of Editor-in-Chief: the control you once had over your Beverly Kirkpatrick, LSW life is stripped from you, your family Philadelphia, Pennsylvania and those around you. Over the Editors: Ira D. Davis, MD Vanessa Underwood, BS, years, many patients have Cleveland, Ohio AFAA, ACE Plaistow, New Hampshire succumbed to the loss of control, Maurie Ferriter, BS Lakeland, Michigan Jim Warren, MS Beverly Kirkpatrick feeling that it was all a part of the San Francisco, California Cheryl Jacobs, LICSW transplant process. This issue of Minneapolis, Minnesota Becky Weseman, RD, CNSD, LMNT Omaha, Nebraska Chronicles is here to tell you that this is not so, and Teresa Shafer, RN, you need to get back in the driver’s seat. It takes MSN, CPTC Laurel Williams, RN, MSN Ft. Worth, Texas Omaha, Nebraska time, persistence and determination, but these Nancy Spinozzi, R. Patrick Wood, MD articles will be helpful in your attempt to gain back Boston, Massachusetts Houston, Texas the control and independence you had prior to your Editorial Office: End Stage Disease. National Kidney Foundation, Inc. 30 E. 33rd Street, New York, NY 10016 The responses we’re receiving on our “Hot Topic” (800) 622-9010/(212) 889-2210 http://www.kidney.org questions have been numerous. We will put a Executive Editor: Editorial Director: diverse few in each issue. Thanks for the feedback Diane Goetz Gigi Politoski and, as always, we love to hear from you. T Managing Editor: Editorial Manager: C Sara Kosowsky Marla Behler, CSW Design Director: Production Manager: Beverly Kirkpatrick Oumaya Abi-Saab Stephanie Knox for the Editorial Board

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Support and education for transplant recipients, their families and friends on the Internet! Go to: www.kidney.org ➔ Transplant Recipients ➔ transAction For: • Up-to-date information about the transAction Council • Membership opportunities • transAction Message Board • Information on transplantation and donation • Information on upcoming events • Links to other relevant sites

2 Transplant Chronicles, Vol. 6, No. 2 I then began my summer by training, knowing Crossing the Finish Line Nationals would be in sight again. I wanted to be Continued from page 1 in great shape when the season began. I was among our top five runners. As our meets went transplant for June 16 of my senior year, so that I on everyone kept dropping their times and we could recover and be ready for college in the fall. kept looking ahead at the conference teams to My father was the first to be tested, and he was beat. Our coach received conference coach of the found to be a match. We felt very lucky, as it is year. This gave us the confidence we needed for difficult to find a matching donor. Regionals. With 28 teams on the line, knowing that we would have to place in the top three June brought finals week, a graduation party, teams to go to Nationals, we ran extremely well. my uncle’s wedding and the transplant. Monday and Tuesday were days of testing to be sure that At the Nationals in Boston, we strided out onto everything was ready to go. Lots of blood tests the starting line as a team and did our team were used for matching; I was surprised I had any cheers. It was the greatest feeling. As we toed the left. Wednesday I checked into the hospital, and line, we could feel we were going to do great! The that evening all of my friends and family came to race started out fast and I made sure that I got keep me company. Later that night I was taken out quick. Mud was flying everywhere and down to get a pic line into my artery so that blood everyone was trying not to fall. During the race could easily be drawn. The surgery was there was rain, snow, sleet and hail! But before scheduled for the next morning. I was taken we knew it the race was over! A teammate and I down to surgery at 7 a.m. and it began at 8:30. had claimed All-American! She had taken 33rd By 11:30, I was the lucky recipient of a new fully and I was 35th. I couldn’t believe it. functioning kidney. I am currently taking anti- rejection medications, including azathioprine, On our way out of the park, we noticed the cyclosporine, prednisone and diltiazem. I will results were posted. We took second! I think my continue taking these for the rest of my life. heart stopped; we were screaming, crying and hugging each other. Our fans who came to cheer My first year at the University of Wisconsin-Eau us on from Eau Claire were there to congratulate Claire was a time for adjusting to being away from us. We then headed to the university to dress for my family, studying, working and making new the awards ceremony. While we were getting our friends. At this point, I thought I was done awards, I remembered the year before when the running competitively, until I met some girls who other teams were getting their awards, and I had were on the cross country and track team and thought to myself, I will be up there next year. And decided that next year I was definitely going to try there I was. It was one of the greatest moments of competing again. My first year back, I was close my life. to the end of the pack, but still enjoyed being part of a team again. When the ‘96 season came This dream would never have come true if I had along, I just wanted to improve my times from the not had the transplant. I am so thankful to my year before. With the help of our new coach, I dad for giving me another chance at life and moved from the bottom third of the team to being standing by to watch me accomplish my goals. one of the top seven runners. Our team ended up My dad tries to make all of my races, but even if placing second at Regionals, which brought us to he is not there, I know that he is thinking of me Nationals, where we ended up 12th in the nation. and wishing me luck! I am doing great and continue taking my anti-rejection medication. I Personally, I also had a great track season. I am still running and have just finished indoor was one second away from qualifying for track. I had started the season running the 5K, Nationals in the 800 and five seconds in the 1500. 3K, 1500 and 4x400. My events changed at the I was so happy and couldn’t wait for our outdoor conference meet. I ran the open 600 and took season. But then I ended up catching a cold and fourth, having never run the event! I also placed was given medication that reacted with my anti- fourth in the 1000 and 4x400. I also ran in the rejection medication. The reaction caused an distance medley relay in which we placed second. intestinal infection, and I spent four weeks out of I am now training for the outdoor season and T track. I was lucky that I could run in the can’t wait for the meets to begin. C conference meet. I came back as strong as I could, but I had no chance of qualifying. Transplant Chronicles, Vol. 6, No. 2 3 Letter to the Editor and behavior? Are we to become a value free, excerpted from a letter by Joseph A. Caruso morally neutral society, instilling in our children a lack of standards and guidelines and teaching My name is Joseph A. Caruso and I’m writing them that everything in life is negotiable? to express my feelings on the commentary No one disputes that organ transplants save “Financial Incentives as a Means to Increase lives. However, lives are not lost, as the Organ Donation” that appeared in Vol. 5, No. 3 of commentary suggests, because families have a Transplant Chronicles. different value system than ours and say no to I am a heart transplant recipient. Four years donation. In many cases, potential donor families ago, I received this most precious gift by the grace are not asked or say no to donation due to several of God, the skilled hands of dedicated, ethical, factors, including ignorance about the subject, professional doctors, and the caring of a fellow lack of education regarding donation, and that human being. For the family of the donor, the they are asked to decide at a difficult and stressful decision to give must have been painful and time. difficult since it had to be made during trying and We must therefore conquer ignorance, dispel emotional times. Yet, love and care for their fellow myths and hearsay, inform and educate the public man won the day and the decision was made to about organ donation and transplantation. Then, pass the gift of life to others without recompense. and only then, can the educated individual make a rational choice. I was appalled to read that financial incentives have been and are still widely discussed as a way Money or any other form of compensation to increase organ donations. This is an affront to introduced into the organ procurement system me and to many thousands of recipients, it insults would only corrupt and devalue the system and the families of donors and demeans the memories life itself. Anyone with some knowledge about of their loved ones. It would also be detrimental organ procurement, organ donation and organ for the undecided populace when asked to donate. transplantation knows that too many people die every day waiting for an organ to become Are we to set aside and re-invent our own available. But this problem may be drastically values as the need arises on a day-to-day basis so reduced, if not eliminated, through public that we may justify unethical, immoral practice information and education at all levels of society.

Response from the Author by Teresa Shafer

Mr. Caruso has provided compelling commentary on the ills of and reasons not to pursue financial incentives for organ donation. Those of us who have attended meetings where this issue has been discussed have heard these arguments, most of them not as eloquently put as they are by Mr. Caruso. As I stated in the article “Financial Incentives as a Means to Increase Organ Donation,” one of the reasons for not exploring the area of financial incentives is that money introduced into a system, especially a system where so much is at stake, corrupts.

Having said this, I would like to point out, however, that many believe that helping families pay for the funeral or providing them with a death benefit is not coercive or unethical, nor does it establish organ brokerage. From my previous experience as an organ procurement coordinator and from anecdotal evidence of discussing this issue with others who work in the field, I often came across disadvantaged families who were stressed by having to pay for a funeral, or families who simply needed a little extra help with costs associated with end-of-life issues.

I am not promoting financial incentives, as I have been quick to criticize others who have pursued drastic measures before considering the consequences. I would never want to do harm to our current system, which is the envy of the world. However, I try to keep an open mind about issues such as these because there are nearly 60,000 individuals waiting for an organ transplant, and only approximately one-third will receive one. Dr. Tom Peters has suggested that due to the extensive discussion that has already taken place and the results of the National Kidney Foundation poll on this issue, a pilot study may be warranted. This study would take the form of a benefit for use in funeral expenses.

In the closing sentence of the article I wrote, “It may be that patients, donor families and members of the public who are not seen as having a conflict of interest on this issue need to partner with those in our industry such as Dr. Peters, who are well-versed and passionate about the topic, to get a pilot study implemented or decide that it will not be done at this time.” It would appear that the issue has its first volunteer from the patient side, one who is passionate and concerned: Mr. Caruso.

4 Transplant Chronicles, Vol. 6, No. 2 keeping fit Motivation, Determination, Perspiration by Vanessa Underwood, BS, AFAA, ACE

M any years ago I had the opportunity to Although I had watched my diet, as I had been learn that life is short and I must cherish it! instructed to do, I was not losing any weight. It Determination, along with desire and a was not until I incorporated exercise into my daily commitment to take control of my life and my routine that I began to see a reduction in my future, have empowered me to achieve my goal of weight, as well as a change in my body becoming fit in every sense of the word. Exercise composition, increased energy, self esteem and has been the pillar of my strength since the first CONTROL. Each time I would go to the clinic, the few weeks after my first transplant 18 years ago. doctors and nurses would say, “You look great, what are you doing?” Proudly, I would tell them of my exercise regimen. Their appreciation for this panacea was limited. It was up to me to take control and do it on my own.

As the years passed, I continued my quest for total health. Exercise had become vital to my quality of life. While I was attempting to find the person I once knew, my body was becoming strong and fit from the inside out. I was aggressively combating deterioration and muscle weakness caused from medication and disease. I was lessening, and today I believe counteracting, many side effects of the medication. My blood pressure had decreased, my good HDL increased, my immune system was stronger and my bone density was increasing. I was decreasing joint pain, and increasing flexibility and muscle tone. I was feeling Transplant recipient Vanessa Underwood (left) motivates her wonderful! And, of equal importance, I improved peers to take control of their lives through exercise. my self esteem, confidence and feelings of self worth. Eighteen years ago, transplantation was a bit more difficult and the drugs were certainly not as Little did I know that this desire to control my sophisticated as today. Although my kidney was life would result in these magnificent benefits. I doing fine, my body was devastated. Due to the needed to do something and it seemed that large amounts of prednisone I was taking (remem- exercise was a means of controlling my life. No one ber this was 18 years ago), my body had changed else could do it for me, no one could tell me how, so drastically that it scared me. I was aching all what, when or why. Having that little bit of control over, my face had taken a new look and my body empowered me to believe in my strength and composition was that of a person I did not know. ability to overcome all the challenges that I would face. It gave me that extra inner strength to know It was at this time that I took control over my that at the time when I was at my worst, I could life. I needed to focus on my strengths and not my still partake in my own care and maintain some weaknesses. This was also when my commitment degree of control over the direction of my life to my health began. What good was my health if I and my health care plan. was a physical and psychological mess? Appearance is very important to a person’s Exercise, proper nutrition and a positive confidence, self esteem and perspective on life. Not attitude have proven vital to my total well-being, only did I want to look good and feel good, but I and it may help you, too. Sounds too simple, truly did not want people to think of me as sick. Continued on page 6

Transplant Chronicles, Vol. 6, No. 2 5 Keeping Fit If you are finding it difficult to discipline yourself, you should identify what is holding you Continued from page 5 back. Is it lack of time, fear of the unknown, uncertainty about what to do? Don’t give up doesn’t it? Well, in one sense it is a simple hope. There are ways in which you can overcome prescription, yet it takes fortitude, discipline and these hurdles and make fitness a part of your life. hard work. Begin by making a contract with Try the following: yourself. “I want to begin an exercise and fitness ✔ Stick with it. Many people start exercising, program. This will make me feel much better and then stop and start, always having to begin physically as well as emotionally. In order to do again. How do you stay with it? this I must begin today. I am not sure what I am ✔ Attitude shift — you need to take a strong able to do today, but I will begin and then I will do stance and then move forward. the very best I can. I will take small steps and ✔ A gift to yourself — think of exercise as a gift progress slowly. I will try to accomplish my and not a burden. workout one step at a time. Although I must do this ✔ Ease into your program gradually. one moment at a time, one day at a time, I must realize that this workout is the beginning of a ✔ Modify your goals. Ask yourself if you are process that will last a lifetime.” pretty sure you can reach your goal. ✔ Schedule exercise time, just as you would People always ask me about motivation, which any other appointment. is just a nicer work for discipline. Each time you ✔ Think ahead. Sometimes exercising first thing work out, it should not be a new commitment. in the morning prevents the day from getting in This is why so many people just THINK about the way. exercise. They just can’t seem to find the ✔ Make it a priority in your day, not an motivation to make an ongoing commitment. afterthought. Exercising regularly is a discipline. Have you ✔ Aim for participation, not perfection! disciplined yourself to make changes because it is vital to your health? We have all had to make Understanding the value of exercise is much critical changes in our lives. It is time to add a more acceptable today than it was many years regularly scheduled exercise program! ago. So now that you can all understand the value and have the motivation, you’re ready to T begin. Good luck! C

MARK YOUR CALENDARS AND JOIN THE

AT ITS ANNUAL MEETING “TAKING CONTROL OF YOUR LIFE” A program for all organ transplant recipients, their families and friends, in conjunction with the National Kidney Foundation’s National Donor Family Council and Patient and Family Council. OCTOBER 23, 1998 - OCTOBER 25, 1998 Philadelphia, Pennsylvania Sponsored by the National Kidney Foundation. For further information, call Marla Behler, CSW at 800-622-9010.

6 Transplant Chronicles, Vol. 6, No. 2 eating right

Sensible Eating: Controlling Your Diet by Becky Weseman, RD, CNSW, LMNT

I n today’s world there is more variety and a In addition to fats and sugars, it’s also greater number of foods to choose from than ever important to monitor your carbohydrate intake. before, whether you eat out or prepare foods at Hyperinsulinemia, increased amounts of insulin home. The market has also been flooded with in the blood, is another condition currently nutritional supplements in pill form and ready-to- being studied. If you eat a large amount of drink nutritious snacks. All of these food choices starches and carbohydrates, your pancreas has combined with diet restrictions or recommen- to send out more insulin in the blood to handle dations can lead to a great deal of confusion. The these carbohydrates. This may also increase the bottom line is that we must all be responsible for risk of cardiovascular disease. what we eat and drink! The age-old saying “all food in moderation” still applies today. Eliminat- These facts emphasize the need to make wise ing any specific category of foods from our diets food choices. We are fortunate to have a variety or consuming excessive amounts of food from of foods available to us, so why not take other food groups can lead to possible negative advantage of it? If you follow special diet side effects. restrictions, it may be necessary to ask a In the past few years, there has been a doctor or dietitian when considering new push toward very low fat diets. In an food choices in your diet. These are attempt to accomplish this, many people some key points to remember when have replaced higher fat foods, such as taking control of your diet and pastries, cookies, snack crackers or planning good nutrition: candy with lower fat versions. But for processed foods like these, low in fat • Stay informed about sound nutrition does not necessarily mean low in calories, and don't quickly jump to fad diets; because extra sugar is often added to consider the potential positive and compensate for the loss in flavor when fat is negative side effects of major dietary removed. It's important to choose foods carefully changes because you can gain weight if you do not pay • Select a variety of foods when preparing close attention to the total number of calories you meals eat. Eating more sugars, called concentrated • Get professional advice from your doctor or sweets, can lead to increased levels of dietitian on nutritional supplements triglycerides (another kind of fat found in the • Make eating enjoyable! blood and a possible risk factor for heart disease).

Easy Pasta Salad

16 oz. uncooked plain or flavored pasta (try 1/2 cup sliced red pepper garlic and cracked pepper) 2 tablespoons grated Parmesan cheese 15 oz. can diced Italian spiced tomatoes 1 tablespoon olive oil or canola oil Cook pasta as directed on the package. 1/2 cup sliced green onions Drain and rinse well with cold water. Mix all 2 teaspoons sugar other ingredients together and pour over pasta. T 2 teaspoons prepared mustard Mix well and chill before serving. Enjoy! C 1/2 cup sliced green pepper

Transplant Chronicles, Vol. 6, No. 2 7 Taking Responsibility for Ourselves, Our Lives by Maurie Ferriter

H aving a chronic illness that requires an organ should be given and new appointments made. transplant is not something most people want to Financial agreements also need to be kept. This encounter on the road of life, but for many of us it can mean paying insurance premiums on time, is a reality. Not long into the journey, we come to a meeting predetermined payment schedules or pretty clear conclusion about our ability to survive notifying business office personnel if there are on our own and realize we need a lot of help from any changes in our employment or coverage many sources, including family, friends, medical situation. professionals and employers, just to name a few. We use a lot of resources in our efforts to regain These and other responsibilities can be looked some degree of normalcy in our lives again. In at as a way to “pay back” all those who have return, there are various levels of accountability assisted us in regaining some degree of normalcy and responsibility that should go along with using in our lives. Many people look negatively at these those resources. things as duties or requirements that shouldn’t be their concern. They think the system will take We need to be responsible to those closest to us. care of them forever, but this is our half of the Families and friends who have been supportive bargain we made when we decided to have a need not only words of thanks and appreciation, transplant. Part of that bargain is to make sure but continuous actions to show we really mean the system will be around in the future. There are what we say. Others who may have kept their no guarantees or extended warranty periods for distance or chosen to avoid our situation should organ transplants. Some of us may need to be given the chance to come back into our lives. access the system again. They may have been coping with our situation in the only way they could. If they choose to still stay We can also look at these responsibilities as at a distance, we should let them go without opportunities for us to grow as individuals. Some passing judgment about them. For a long period of recipients accomplish things they never thought time, we have taken much from the system and we were possible. Others set new goals for need to learn to become givers again. themselves and are well on the way to attaining them. Returning to work, going back to school or We are accountable to the medical system in volunteering are all ways of being productive many ways, including keeping follow-up again. This addresses the biggest responsibility of appointments, openly communicating with health all — the one we have to ourselves. We owe it to care team members about current issues, getting ourselves to make the most of our lives, because labs drawn when scheduled and participating in we were given a second chance many others will decisions about future plans. If schedules cannot T never get. C be kept for a good reason, timely notification

This Issue’s Hot Topic Hot Topic Response (Issue 6:1) Following is an example of a response to the Hot Topic questions from our last issue: As a Should there be financial incentives recipient, do you think age should be a factor? Is for donor families to increase organ someone too old to receive an organ, or should donation? the older patient be considered lower priority? If so, should it only be in the form of Age should not be factor in receiving an organ transplant. The recipient should be given the a benefit to donor families for option of transplantation no matter what his/her assistance with funeral expenses? age. But I would not accept the transplant if it meant someone younger would not get it.

8 Transplant Chronicles, Vol. 6, No. 2 Transplant News Digest

From the editors of Transplant News Number of Americans Donating Organs and Eyes Virtually Unchanged in ’97 from ’96, Continuing Five-Year Trend by Jim Warren, editor and publisher

For the fifth year in a row, the number of "The recent leveling of donation in the U.S. cadaveric organ donors in the U.S. remained appears to parallel the trend in Canada and virtually unchanged. The preliminary results western European countries performing from the United Network for Organ Sharing transplants," UNOS observed in a press release (UNOS) reveal there were 5,447 cadaveric donors announcing the 1997 preliminary statistics. in 1997. There were 5,420 donors in 1996. The "While there may be no single explanation for the number of living donors followed the same trend, U.S. trend, many transplant professionals believe with UNOS reporting there were 3,626 in 1997, that the number of potential donors (those who compared to 3,607 in 1996. are medically suitable for organ donation upon death) may be declining. Factors possibly Final eye banking statistics for 1997 released affecting the number of potential donors include by the Eye Bank Association of America (EBAA) more effective traffic safety laws, improvements mirrored the UNOS solid organ results and in trauma care and treatment of strokes, and the showed an actual decrease in the number of increased prevalence of infectious diseases, such donations and corneal transplants performed in as HIV, that would preclude donation." 1997 compared to 1996. For additional information, contact: UNOS There were a total of 90,465 eye donations News Bureau - (804) 327-1432; EBAA - (202) from 45,696 donors in 1997, compared to 775-4999. 92,162 from 46,045 donors in 1996. They resulted in 45,493 cornea transplants in 1997 HHS regulation mandates OPTN board compared to 46,300 in 1996. develop a liver allocation policy based on equity, not utility The number of solid organ transplants resulting from the 5,447 cadaveric donors After more than a year of telegraphing her increased approximately 1.1 percent. UNOS intentions, Secretary of Health and Human reported there were approximately 17,000 Services (HHS) Donna Shalala sent a sharp organs transplanted in 1997 compared to 16,807 message to the transplant community that organ in 1996. Adding the 3,626 living donors brings allocation policies in the U.S. in the future will be the total number of organ transplants to 20,626. based on equity, not utility. Overall, intestine transplants (64 in 1997 compared to 43 in 1996), lung transplants (904 The new regulation, published April 2 in the in 1997 compared to 791 in 1996) and heart- Federal Register, broadly establishes that the lung transplants (61 in 1997 compared to 39 in sickest patients should have the most immediate 1996) experienced the biggest percentage access to organs and mandates uniform national increases. Kidney, liver and pancreas criteria for transplant status, rather than transplants had minuscule increases. The evaluation by each individual transplant center, number of heart transplants actually decreased as is the case today. slightly. There were 2,278 heart transplants in 1997 compared to 2,342 in 1996. The country's liver allocation program is the most immediate target of the HHS regulations. The number of persons on waiting lists for They required the board of directors of the Organ corneal tissue in the U.S. as of December 31, Procurement and Transplantation Network 1997 was 2,603. The number of persons (OPTN) to revise its current liver allocation policy scheduled for corneal transplant surgery in the and propose a new policy within 60 days of the U.S. as of December 31, 1997 was 2,964. April 2 effective date.

Transplant Chronicles, Vol. 6, No. 2 9 The final rule includes a new 60-day comment "The regulations (also) mean that many liver period, and becomes effective 90 days after April 2. transplant programs would have to shut down, The OPTN would then have another 60 days to (and) would divert livers from many smaller propose new criteria for livers. That gives the OPTN programs to a few large centers. This would board a total 150 days to present new liver significantly harm patient care by forcing sick allocation criteria based on allocating the livers to people to travel far from home at the worst those with the highest medical urgency status, possible time. Poor people who cannot afford to with reduced reliance on geographical differences. travel could be deprived of transplants entirely." Hunsicker also expressed concern that the The board will have a year to devise similar government is imposing the new regulation allocation criteria for all other solid organ "unilaterally" without sufficient input from the transplants. transplant community.

(On April 30, Rep. Bob Livingston (R-LA), The regulation also calls on the OPTN to chairman of the House Appropriations Committee, develop uniform criteria for determining a slipped an amendment into a spending bill during patient's medical status and eligibility for a House-Senate conference. Livingston's placement on a waiting list. The criteria are to be amendment extended the public comment period based on medical judgment and common medical to Aug. 31 and delayed implementation of the rule criteria, no matter where the patient lives or in to Oct. 1. The public comment period had been which transplant center he or she is awaiting scheduled to end on June 30. The amendment treatment. merely delayed, not eliminated, the implementation date.) But Hunsicker suggested that the policy was formulated too haphazardly and needed more "Patients who need an organ transplant should input from all sides. "I don't want to see a quick not have to gamble that an organ will become fix that doesn't fix the underlying issue," he said. available in their local area, nor should they have "It’s just going to go on and on until we have a to travel to transplant centers far from home better understanding of how these policies are simply to improve their chances of getting an made." organ," Secretary Shalala said, in announcing the issuance of the much-anticipated organ allocation Ron Ferguson, MD, president of the American regulations. "Instead, patients everywhere in the Society of Transplant Surgeons (ASTS), agreed. country should have an equal chance to receive an "Our constituency in general thinks the principle organ, based on their medical condition and the foundation for establishing broad public policy in judgment of their physicians." this should be one that maximizes benefits for all The issuance of the much-anticipated regulation Americans," he told Transplant News. "We have a touched off a firestorm of reaction from the question whether equity in waiting times and transplant community—both pro and con. broadening the definition of status one liver patients accomplished that." "Patients have voiced their concern that the system is not fair," said John Fung, MD, chief of "We already have very close waiting times transplantation at the University of Pittsburgh across the country. I don't know what the upside Medical Center, which many feel spearheaded the of this rule is but I do know patient access is a lobbying effort that led to the policy change problem by shutting down programs and it will mandate. "The government has finally realized that have an impact on local procurement. There must something must be done. By standing up for the be a dramatic upside to the rule and we haven't patient's interest, the Secretary has done the right seen it yet." thing." Ferguson believes it is time for Congress to hold However, Larry Hunsicker, MD, president of the hearings on reauthorizing the National Organ United Network for Organ Sharing (UNOS), the Transplant Act (NOTA) and clarifying, among administrator of the Organ Procurement and other things, who has the authority to set what Transplantation Network (OPTN), disagreed and policy. suggested the new regulations could backfire. "The regulations mean that in the long run fewer people NOTA, first passed in 1984, set up the national will get liver transplants and fewer lives will be solid organ procurement and transplant program saved," he said. in the U.S. Although it is supposed to be 10 Transplant Chronicles, Vol. 6, No. 2 reauthorized by Congress every three years, it has • for determining the status of patients who are not been since 1990. listed. Medically objective, uniform criteria would help ensure a ‘level playing field’ in "It has been eight years since NOTA expired selecting among patients and determining and I think it’s time Congress expressed their which have the greatest medical need. The intent," he said. "Once more we need to clarify OPTN is already developing uniform criteria of what Congress meant by passing NOTA. We all this kind. need to take a deep breath and clarify who should do what." "We are not substituting our judgment for the judgment of medical professionals," Shalala Earl Fox, MD, administrator of the Health emphasized. "We are asking them to make the Resources and Services Administration (HRSA), system fairer, and we are setting clear urged people to read the entire HHS regulation performance goals to guide their work." before forming an opinion one way or the other. Other provisions in the regulation include "There are a lot of misperceptions about what enhanced access to center-specific data about the regulations contain," Fox told Transplant transplant centers, measuring outcomes and News. "They do a good job of laying out and helping patients and physicians to choose among clarifying the department's overall goal. Congress transplant centers; a broad definition of the charged HHS with oversight of the oversight of the composition of the OPTN membership and board OPTN. We are not doing it in heavy-handed of directors; the process for HHS review of OPTN fashion. We look to the medical community for policies before they become mandatory for OPTN their expertise in developing the final allocation members; and approval over fees charged for policies." registration on the OPTN waiting list.

The new HHS regulation calls for the OPTN Congress approves $500,000 increase in DOT board to develop three new sets of criteria for budget for FY '98; President seeks $2 million organ allocation which will be open to a public increase for FY '99 comment period. The criteria, according to HHS, are: Congress has approved a total of $2.8 million for fiscal year (FY) 1998 for organ transplant- • aimed at allocating organs first to those with related programs administered by the Division of the highest medical urgency status, with Transplantation (DOT) — an increase of $500,000 reduced reliance on geographical factors. HHS over FY 1997. The total fell far short of the believes this will reduce disparities in waiting Clinton administration's request for $1.67 million times for patients at different transplant but still represented a 250 percent increase over centers in different areas of the country. last year. Today, there is a wide variation in waiting times, with patients in some areas waiting five The administration has not backed off its times longer or more for an organ than support of organ donation, however, and is patients in other areas. The new criteria would requesting $2 million for FY 1999 to support the provide for wider sharing to assure organs Department of Health and Human Services/Vice were made available to patients with greatest President Gore organ donation initiative medical need. announced in December 1997.

• to be followed in deciding when to place "We are very pleased the administration has patients on the waiting list for an organ. budgeted such a large figure to prime-the-pump Today, each transplant center establishes its for us to meet the goals of the initiative," Jon own criteria, with the result that patients Nelson, acting director of DOT, told Transplant listed at one center may not be as ill as News. "We plan to use the FY 1998 funds to take patients not yet listed at another center with a good look at what works in the consent process, more stringent medical listing criteria. Under better assess what works and what doesn't, and the regulation, the OPTN would develop ensure hospitals refer donors." medically objective criteria to be used by all transplant centers.

Transplant Chronicles, Vol. 6, No. 2 11 In approving the compromised FY 1998 total of tubular necrosis than in the control group. And he $2.8 million, two related Senate amendments said the incidence of acute rejection has been very were dropped. One would have required a study low. concerning efforts to improve organ and tissue procurement at hospitals and a survey of at least Virginia first state to issue donor awareness 5 percent of hospitals having an agreement with license plate an organ procurement organization. Virginia has become the first state in the U.S. to The second was a non-binding sense of the develop an organ and tissue donor awareness Senate resolution urging hospitals to "take license plate, which its citizens can purchase for prompt steps to ensure that a skilled and $25 in addition to the regular license plate fee. sensitive request for organ or tissue donation is The Virginia Transplant Council (VTC) developed provided to eligible families..." the idea, which was approved by the Virginia General Assembly in July 1996. In dropping both amendments from the final appropriations bill, the House-Senate conferees The VTC says the Division of Motor Vehicles nevertheless encouraged the HHS Secretary to (DMV) will produce the plate when 350 prepaid conduct the study required by the first applications are received. The DMV is also amendment and report to the House and Senate allowing up to six characters for personalized Appropriations Committees "on best practices for plates for an additional $10 charge. Some of the identifying donors and communicating with early purchases include: "IMALIVE," "NULIFE," relatives of potential donors." They also made "DON-8," and "NUKDNY." clear they concurred in the sentiment expressed by the sense of the Senate resolution. Once 1,000 plates have been sold, $15 of the annual fee will be used for donation education Group advocating transplanting two projects statewide. "marginal" kidneys in a patient conducting a three-year study Australia reports 63 percent increase in organ donation following World Transplant Games Transplant surgeons typically reject last fall histologically "marginal" organs because of concerns that they will fail to function adequately Australia experienced a 63 percent increase in in the long term. But a team of international organ donations last October, November and researchers believes that transplanting two December just following the September World marginal kidneys into a patient may be as Transplant Games in Sidney, according to a study effective as a single "optimal" allograft and would by the World Transplant Games Federation. be one way around the current donor shortage. The Double Kidney Transplant Group theorizes The study showed that at least 48 more people that transplantation of two marginal kidneys in New South Wales and Victoria had kidney, should increase the number of functioning heart or liver transplants in October-December in nephron units to an acceptable level. To test this 1997 compared to the previous year. hypothesis, the group is following 50 double- kidney recipients for up to three years and More than 1,600 telephone interviews comparing renal survival with those of controls conducted before and after the games revealed given a single transplant. Lecturing at the Italian that, out of the population of 4 million aged 16-60, Science Seminar in London, Dr. Giuseppe nearly a quarter of a million people had their Remuzzi of the Mario Negri Institute for views positively changed or their beliefs reinforced Pharmacological Research in Bergamo, Italy, said by the success stories that emerged from the T that 30 double transplants have been done so far, games, the Federation said. C with no more surgical complications or acute

12 Transplant Chronicles, Vol. 6, No. 2 medical beat

Post-Transplant—Taking Control of Your Life by R. Patrick Wood, MD

When I began performing liver transplants Focusing on the post-transplant period, one of over 12 years ago, I had the grandiose idea that the first aspects of taking control should be in I could turn individuals into successful three areas: medications, lab tests and clinic transplant recipients. Not only was this attitude follow-ups. Patients in control not only carry a unrealistic, but it also led to incredible written list of their medications and dosages frustration and the tearing out of what little hair with them at all times, but have a working I had left. What I have come to realize, over time, knowledge of what these medications are, what is that the success of transplant recipients is they are for, and what the potential side effects largely dependent on their own desire to make it may be. It is inappropriate, and indeed unwise, work and to take control of their transplants. for patients to come to clinic claiming they take “two blue pills twice a day and three red pills The transplant program’s responsibility is to three times a day” without any knowledge of provide a team that will support patients with what these medications are for and why they are the necessary components for them to be taking them. Physicians are entirely dependent successfully transplanted. The goal of all upon feedback from the patient in determining transplant programs is to restore recipients to a whether medication doses are inadequate or good-to-excellent quality of life and to move excessive based on the patient’s report of side them back into the mainstream. As this occurs, effects or monitoring such things as blood patients will be seen and monitored less pressures while at home. Knowledge of the how frequently by the transplant program, giving and why of medications will lead to improved them more opportunities to neglect their health. compliance among all patients and this is clearly The unfortunate reality is that if a patient shown in those patients who take an active role chooses to be resistant to medical follow-up after in understanding their medications. transplant, there is little or nothing that the transplant center can do to prevent it. Most The next aspect of taking control is lab tests. centers will attempt to counsel the patient and It is inappropriate for patients to rely solely on will certainly be reluctant to re-transplant a the transplant center to obtain their laboratory negligent patient, but the reality is that there is tests and review them. A patient in control will no way to force an adult patient to cooperate work through the lab to obtain his or her own with post-transplant treatment. test results and will ensure that they are reported to the appropriate transplant program. In many cases, those patients facing life- This is not to say patients can independently saving transplants often suffer a loss of control make decisions based on their own review of as their disease progresses. While they await their lab tests, but certainly a patient should transplantation, they may require an know the rationale for the various lab tests and increasingly strong support system to simply be aware of the consequences of abnormalities in maintain an acceptable level of health to remain these labs. By teaching patients how to obtain a potential transplant recipient. Many potential their lab results and to have at least a “ballpark” transplant recipients have an extremely difficult idea of what each lab test should reflect, the time with the concept of giving up control to transplant team can provide patients with a level their support system, and this can become quite of control and understanding that allows them to a difficult issue between patients and their reliably obtain their own blood tests and forward families. As their disease progresses, patients them to the transplant program. may lose their abilities to drive to work and, at times, to even carry out their daily living The next aspect of control in a patient’s life is activities. However, following a successful to understand the how and why of follow-up transplant, patients are given an increasing role visits in the clinic. Patients should ensure that in their own care and offered the opportunity to take control of their transplants. Continued on page 14

Transplant Chronicles, Vol. 6, No. 2 13 procedures. In the case of pediatric patients, a Medical Beat… continued from p. 13 reliable local pediatrician is of paramount importance if the patient is to be adequately monitored. All patients, with the help of the their clinic visits are necessary and begin to transplant program, should locate these strive to return to their own primary care physicians prior to transplantation and establish physician, internist or specialist. It is especially a good rapport so that they can maintain this important that patients communicate with the relationship following their transplants. It is transplant center about who their referring frustrating for the transplant program to have physicians are. It is extremely frustrating for patients return for a yearly follow-up visit, only referring doctors not to receive information about to find out that they have seen no other their patients from the transplant center. physician during the year and have had all of Oftentimes, poor communication between the their health care managed on an outpatient basis patient and the transplant center may lead to through the transplant program. records being sent to the wrong physician. It is imperative that patients ensure that the Patients who take control of these areas of transplant program is communicating with the their lives following transplantation have taken a appropriate physicians. It is also important that huge step in ensuring that their transplants will patients be comfortable with a local physician be successful. Remember that support systems and ensure that this physician will work and health care providers are essential to the cooperatively with the transplant program. well-being of transplant recipients, but taking Patients must have physicians who manage their control by learning about their condition is the day to day medical care, as well as special key to the highest quality of care and quality of T problems such as OB/GYN or minor surgical life. C

NKF Holds Consensus Conference on Drug Substitution in Transplantation

The National Kidney Foundation hosted a Possible advantages include lower cost and two-day Consensus Conference in Washington, better compliance. Possible dangers include D.C., on April 23-24, 1998. Over 40 experts in overdose, underdose and unexpected side organ transplantation, managed care and effects. pharmacology, plus patients and representatives of government agencies, Conference participants discussed gathered to explore the issues surrounding alternative formulations of current branded drug substitution in medical therapy for organ immunosuppressives, substitution of generics transplantation. for branded immunosuppressives and development of a system for monitoring such The purpose of the conference was to substitution. analyze the current practice of drug substitution, predict future trends and Recommendations from the conference will examine the potential effects on patient be published in a future edition of American outcomes. Drug substitution may involve the Journal of Kidney Diseases with a summary in substitution of one generation of a drug for Transplant Chronicles. For additional another, the use of a different agent within the information, visit the “Newsroom” on the NKF T same class of drugs or the use of a generic Website (www.kidney.org). C formulation for a brand-name product.

14 Transplant Chronicles, Vol. 6, No. 2 Advocating For Your Child by Laura Basili, PhD “It is perfectly true, as philosophers say, that life tage. Speak to the transplant coordinator or social must be understood backwards. But they forget the worker on your team to learn about available other proposition, that it must be lived forwards.” resources. The psychosocial, medical and pastoral -Kierkegard care professionals on your team are also resources to seek guidance from or to determine if you need Most parents wish they could see into the future more specialized assistance. Remember, you are to know what lies ahead for their child so they can not alone! make the best choices and decisions when coping with organ transplantation and life-threatening 5. Speak up and be persistent. While diplomacy illness. While no one can “live life backwards,” one is important, if you are not comfortable with your of the most important things parents can do is to child’s care, speak up. You may need to be quite be assertive and effective advocates for their child’s persistent, as people don’t always respond as needs. For those just beginning the journey, it is quickly or as openly as we would like. helpful to learn from other families’ experiences. 6. Trust your intuition. Some of the most crucial 1. Know your child’s underlying illness and the pieces of information that have saved children’s medical features of his or her organ transplant. lives have come from parents who trusted their Knowledge is power, especially when working with intuition. Even if it doesn’t make sense to others, your child’s health care team. To be an effective it is important to follow up until you feel comfort- advocate for your child, you need to be an able. Regret is difficult to live with over time. educated consumer. This may mean asking for 7. Involve your child. One of the best ways to informational material from your medical team, advocate for children is to listen to them. They doing your own research about your child’s have a natural wisdom about their bodies and condition or speaking to other families who have often know when something is happening or been through the process. doesn’t feel right. Involving your child in his or her 2. Build a trusting relationship with your medical treatment and care is essential. A young child will care providers. Whether you work with an ultimately grow to be a teenager with a transplant. individual physician or medical team, your Teaching children to speak for themselves, to relationship with them is essential to your ability communicate with their medical team and to trust to advocate for your child’s medical, emotional and their own intuition is vital for them to be able to spiritual needs. You need to trust the health care negotiate the numerous transplant issues they will providers working with your family and need to face over a lifetime. trust the decisions they are making. It is crucial 8. Be flexible. When advocating for your child’s that your medical providers see you and your child needs, don’t lose sight of the opportunities for as vital members of the treatment team. It is compromise or negotiation with your care team. important to be able to communicate openly and The families who seem to adjust well to the organ honestly about your concerns, your doubts and transplant process tend to be both strong things that please you. If you don’t feel satisfied advocates and flexible problem solvers. As a with your care providers, you may need to find parent, you need to do all that you can to advocate health care professionals you are able to trust and for your child. But at some point you may need to with whom you feel more comfortable. While it let go and trust the process of life. While the may feel awkward to switch, you and your child answers may not seem clear and the path hard to are the ones who have to cope with a transplant follow at times, this is part of living and part of the over the long haul. journey of organ transplantation. As Ram Dass 3. Seek support. The ups and downs associated said, “At some level we care with all our heart… with the adjustment to organ transplantation can and then we finally let go. We give it all we have… feel overwhelming at times. No one knows this and trust the rest to God, to Nature, to the Universe.” better than another family who has been living Editor’s Note: Organizations such as the NKF’s through the ordeal. Talking with other families transAction Council provide recipients of a life-saving from your transplant center can enhance your organ and their families with life-enhancing programs in knowledge, coping skills and ability to advocate for education, fitness and research. For more information on your child. If you don’t live near your center, use a free membership as well as activities of the transAction the telephone or the Internet to find families with Council, call the National Kidney Foundation at 800/622- similar circumstances. 9010 or visit www.kidney.org. 4. Seek out resources. Transplant centers have Laura Basili is a clinical psychologist at Boston T resources for families. Use these to your advan- Children’s Hospital and Harvard Medical School. C Transplant Chronicles, Vol. 6, No. 2 15 Thanks For Your Help, But I Can Do It Myself! by Evelyn Corsini, MSW

It can be difficult for people with chronic The first thing is to prevent that person from illness to achieve and maintain independence. becoming too dependent on you in the first place. Since it is hard for people to change patterns of It is scary to get sick, and it often feels good behavior, let the recipient do as much as his or when someone else is sharing the worry and her condition will allow from the start. If you have responsibility. There are a lot of things to do and not become too set in your role as helper it is to remember when you are sick, and a transplant easier to give it up. But what if there were really recipient may not have much energy, so help is lots of things you had to do and wanted to do, and often needed. But when is it not helpful to be dependence on you was justified? Then where do helpful? When your help prevents someone else you start? from achieving the pride and happiness which come with independent functioning. 1. Get the facts. Ask the doctors and nurses in the transplant program about activity restrictions Sure, I’d like him to be more independent, but he and those “what if” questions. (Of course, include can’t manage without my help. Stop and think for the recipient.) Learn about your loved one’s new a minute, is the patient really unable to do it capabilities and get to know others who have gone without your help, or is it easier for you to do it through similar transplants and what they can do. and not watch the struggles? Do you ever feel sorry the recipient is sick, or do you ever feel 2. Focus on function. It feels better to talk guilty or angry? Maybe it makes you feel better to about what you can do than what you can’t do. help. It is natural to want to help someone who is Don’t dwell on the past and all the old hardships. having a hard time, especially if it is someone you Participate in making future plans together and love. When that person first became sick, you and taking pleasure in daily activities. everyone else in the family rallied to help. Now it 3. Develop new family routines. Stop and is second nature for you to do this. You can think, why am I still doing this? It was a challenge anticipate every need, and you take pride in your for you to take on all of that responsibility, and it caretaking skills. Everyone says the person is so is now equally challenging to figure out how to lucky to have you, and even though you are very share the responsibility. tired, and sometimes resentful, you feel at ease knowing you have helped keep your loved one 4. Take care of yourself and find new safe. Initially, the recovering recipient didn’t want interests. You have been so preoccupied with all of you to do so much, but now the whole being a helper that you have forgotten how nice it family has accommodated every need and you all is to just lie in the backyard and read, have lunch feel comfortable with your roles and with friends, play cards or work on your crafts responsibilities. projects. The recipient will be a lot more independent if you are busy pursuing your own But what if he no longer needs your help? career and personal goals. Change is difficult, even good change like improved health. After transplant, people 5. Help the recipient develop new interests generally have more energy, more physical and activities. When he or she is busy golfing, strength and renewed optimism, and develop a commuting to work or spending time with the new lease on life. They are now able to do kids, there is little time to worry. You don’t always activities that they may not have been able to do have to be together. Your loved one can go off for a long time. But what if they have become so alone and become known as the golfer with the used to having others help them that they are checkerboard hat, rather than the golfer with the frightened at the thought of going it alone. Maybe transplant. all of the helpful family members are equally It can be just as much of a challenge to cope scared. It can be hard to believe that someone with sudden health as sudden illness. But what a who was so sick and needed so much help just a nice problem to have to face! short time ago is really able to do things independently. Evelyn Corsini is a pediatric social worker at the Children’s Hospital Medical Center in Boston. T So, what is the best way to help a transplant C recipient achieve and maintain independence?

16 Transplant Chronicles, Vol. 6, No. 2 The U.S. Donor Pool—Can We Do Better? by Teresa Shafer, RN, MSN, CPTC

S everal studies have shown there are anywhere On the other hand, some patients are from 9,984 to 25,958 potential organ donors in recognized as potential donors but are not 1 the U.S. annually. Additionally, it is estimated referred to the OPO early in the process. Some that there are 25,000 to 26,000 potential non- hospitals refer a potential donor to the OPO only 2 heart-beating donors in the U.S. annually. after the family has been approached by hospital staff and has consented to donation. When Actually, the number of heart-beating organ hospitals handle the consent process without donors (Table 1) falls far short of the potential involving the OPO, consent rates are typically a donor pool for a number of reasons: (1) denied fraction of the rate achieved by OPO staff or the consent from families for organ donation when OPO staff in combination with hospital staff. asked to donate and (2) no referral of the These families have passed up their ability to potential donor by the hospital to the organ donate, and therefore many potential recipients procurement organization (OPO). Additionally, to have lost their chance for a life-saving organ. some extent, trends in motor vehicle accidents, gunshot wounds and other traumatic brain I recently heard an analogy about the manner injuries play a role. And finally, many areas of in which hospitals handle a potential organ donor the country still needlessly lose significant compared to how they handle a victim of a sexual numbers of organ donors due to local medical assault. This situation, like a potential organ examiners refusing to release the organs of donor situation, is tragic and emotionally laden. potential donors, particularly pediatric organ It is common practice to have specially trained donors who have died due to suspected child and educated people on call to interact with these abuse or SIDS. This is one of the major reasons victims. However, when a family loses a loved that the death rate of children on the waiting list one, there are no such protocols regarding which for liver transplants is higher than that of adults. staff may approach the family about organ donation. Hospital staff make the approach Since 1987, the U.S. has shown a 37.4 percent without having the skills and time to treat it like increase in organ donation (4,000 to 5,495 the time-consuming and emotionally demanding donors) while the recipient waiting list (Table 2) situation it is. has increased 346 percent for the same time period, from 13,396 to 59,760 patients waiting. All hospital staff who may interact with these What is the donor pool, realistically? Under ideal families (pastoral care, social workers, physicians conditions, including optimum hospital and OPO and nurses) need the knowledge and expertise to cooperative donation systems in place, a 75 handle this process, as do OPO staff. The consent percent consent rate (which is being achieved in and donation is a process, not a task! Everyone only isolated areas of the country) and no has a role in this process; no one group can do it medical examiner denials, we could perhaps alone. In order for the OPO and the hospital staff recover 7,200 to 10,300 organ donors. So, what to work together, the hospital must make the is keeping us from doing just that? referral early on. Consent to donate is not simply a box to be checked on a release of body form. In Poor Process hospitals where the consent request continues to A 100 percent referral rate and a 75 percent be treated like a task, outcomes will not improve. consent rate, on which the above numbers are based, are perhaps a fantasy. Despite the many Medical Examiner Denials studies that point to the way the donor process What else can be done? Laws can be passed should and does work, there are still many similar to those passed in New Jersey and in hospitals who choose to practice in less than Texas, which require that medical examiners optimal ways, showing poor outcomes both in release all organs for transplantation unless the terms of referral rates and consent rates. Some medical examiners are physically in the patients are never recognized as potential organ donors and are not referred to the OPO; therefore their families are not asked to donate organs. Continued on page 18

Transplant Chronicles, Vol. 6, No. 2 17 Can We Do Better? continued from p. 17 OPO Responsibility Finally, should all of the above conditions ever donation surgery, viewing the organ in question, be resolved, then surely we will recover more of and find that they cannot release the organ. the donor pool. However, it is not all for the This law resulted in more life-saving organs hospitals, the medical examiners, those with being given to patients in need in these two allocation tunnel vision or the public to fix. OPOs states, while continuing to provide medical must be prepared to provide an expert and user- examiners with all of the forensic information friendly system, investing the resources needed they need to do their job: determining cause and to respond quickly, expertly, and with the manner of death. Other states are currently appropriate type and number of staff to handle considering such legislation and hopefully will the entire donation process. OPOs should be at be successful in this arena. the forefront of this campaign, tirelessly working Organ Allocation Tunnel Vision to recover every possible organ, designing and trouble-shooting donation systems in hospitals, Many leaders and patients within the industry removing any roadblocks in each and every case continue to focus on organ allocation instead of and referral, and promoting donation in public increasing organ donation. This diverts time, venues. Therefore, the OPO and its staff must energy and financial resources away from the exhibit dedication, passion and professionalism. task at hand. If they exhibit such characters, OPOs should The Public expect all of the parties mentioned above to belly up to the bar and be held accountable for On average, only 50 percent of those improving outcomes. It’s good medicine for our approached say yes to donation. Public communities. education, as well as expert OPO and hospital practices, could raise the consent rate significantly.

Table 1: Number of U.S. Organ Donors By Year, 3,4 1987 1988 1989 1990 1991 1992 1993 1994 1995 1996 1997 4,000 4,084 4,019 4,512 4,528 4,521 4,861 5,100 5,357 5,412 5,495

Percent Increase in Organ Donation from 1987 thru 1997: 37.4 % Table 2: Number of Persons Awaiting Transplantation in U.S.4 1987 1988 1989 1990 1991 1992 1993 1994 1995 1996 1997 13,396 16,026 19,095 21,914 24,719 29,415 33,394 37,684 43,937 50,130 59,760

Percent Increase in Patients Awaiting Transplantation from 1987 thru 1997: 346 % Editor’s Note: The National Kidney Foundation References recognizes that before people can deal with the 1. Evans, RW, Orians, MA, Ascher, NL. “The Potential sensitive issue of organ and tissue donation, they Supply of Organ Donors: Assessment of the efficiency of must first understand and be comfortable with their organ procurement efforts in the United States.” Journal own feelings and attitudes. “Making the Critical of the American Medical Association. January 8, 1992, Difference” was developed in collaboration with the vol 267, No 2, 239-246. 2. Herdman, R, Potts, JT. Non-Heart-Beating Organ American Association of Critical-Care Nurses (AACN) Transplantation. Medical and Ethical Issues in and is a continuing education program that educates Procurement. Division of Health Care Services, Institute nurses about their important role in providing of Medicine. National Academy Press, Washington, D.C. families with the option of organ and tissue 3. 1980-1987: Evans, RW. The National Cooperative donation. A main objective of the program is to Transplant Study. United Network for Organ Sharing/ Health Care Financing Organization. Health and position offering the option of donation as part of the Population Research Center, Battelle-Seattle Research care nurses offer their patients and families. The Center, Seattle. BHARC-100-91-020, Control Number 01, program is currently being revised and updated to June 1991. reflect current practices, policies and attitudes 4. United Network for Organ Sharing, Based on UNOS T Scientific Registry data as of January 24, 1998. towards donation. C

18 Transplant Chronicles, Vol. 6, No. 2 Between Donor Families and Recipients…

Dear Recipient, same. I have built a new life, different...but fulfilling, Almost five years ago, our lives collided and we bittersweet without my beloved child, but not became part of each other forever. This is truly a without its new joys and rewards. It must be very unique relationship since we cannot know each difficult for you to know whether to contact me and other. Nevertheless this is a real relationship. Fate what to say since the day that gave you new life has made us family. I have as much interest in your brought me the greatest pain. But it is a day that we well-being as your own mother, though I do not even will each mark every year, you in joy and I in sorrow. know your name. With a little help from our Creator, I thought perhaps it is time to share with you what I some of the cells in your body began their life inside truly need from this eternal relationship of ours, of mine. especially on that particular day.

It is so difficult for me to know what to say to you or Every year on our anniversary, I need to know: how to say it, but I have a need to say something. In 1. You are alive and well. the early days I received a lovely letter from you 2. You do not forget. expressing your sympathy and thanks. I did not 3. You are taking very good care of this answer it. It was very early in my grief journey. I precious piece, as I did of the whole. could not yet speak to your wishes. I could barely speak at all. Please understand that, though I did I do not need flowery words of condolence nor a not acknowledge your words, I do still cherish them. detailed report of your progress. If you simply take I have talked with many other donor families who the time to buy a card that says “Thinking of You” share my quandary and many recipients who say the and send it, I will know all I need to know. I will same. We need to communicate but we just don’t know that I am not alone in remembering...that this know what to say. gift was as well received as it was given.

In the years since that day that brought us together Live long and prosper, I have done much healing. I hope you have done the Your Donor’s Mom

I am writing this letter to strongly encourage transplant recipients to write to their donor family. In July 1992, I lost my brother in an automobile accident. My parents, sister, younger brother and I made the decision to donate his organs.

We received a letter that Christmas from Faith, the recipient of my brother’s one kidney and pancreas. There was so much we had in common, I had to write back of course. We had to send letters through the transplant program who would then forward them.

Faith and I communicated back and forth through the transplant program, and then we finally got to write and talk on the phone without going through the program. We finally got to meet on June 15, 1996. My parents, sister and brother were not ready at that time to make this move.

Faith is such a unique individual. Eventually my parents and sister met her on January 12, 1997. This has been such an uplifting experience for my dad after Doug’s death. My father could not open up and talk about his feelings to anyone. My father and brother were very close. With Faith he talked about things I never heard him talk about before.

I should hope that many more donor families and recipients get to meet as we have. Faith is a part of our family and I now have a younger sister, something I have always wanted even though she is only 12 days younger. Cheryl Shaybaugh Donor Sister Gettysburg, PA Note: The NKF has developed communication guidelines for healthcare professionals to help donor families and recipients communicate with each other. For more information, call the NKF at (800) 622-9010 or view the guidelines on the NKF Website at www.kidney.org.

Transplant Chronicles, Vol. 6, No. 2 19 K i d s Welcome to the Kids’ o Corner, Transplant Chronicles’ new home for r the stories, poems, artwork and questions of n our young readers who have received or are close to someone who has e received a transplant. We hope you will welcome this new addition to the Stephanie Tiedt is a four-year-old who r newsletter, and we received a living-related kidney encourage all our young transplant from her aunt in July 1997. readers to contribute to Here, she’s all dressed up and ready to go trick or treating on Halloween. Her the Kids’ Corner. fabulous finger painting is to the right.

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.

National Kidney Foundation 30 East 33rd Street New York, NY 10016