The Gift I Received by Melissa Simone ATTENTION READERS! DON't LET THIS BE YOUR LAST ISSUE! Transplant Chronicles Is Publishing Online with Its Next Issue

Winter 2007 Transplant Chronicles is a Program of the National Kidney Foundation. Volume 13, Number 4

The Gift I Received By Melissa Simone ATTENTION READERS! DON'T LET THIS BE YOUR LAST ISSUE! Transplant Chronicles is publishing online with its next issue. Visit www.transplantrecipients.org or return the enclosed postcard to sign up for e-mail notiﬁ cations. It’s quick and easy!

People often ask me, “Why did you named Kelly. She was fun, com- donate a kidney to a stranger?” Maybe passionate, caring, and a little I should start at the beginning: My crazy! Kelly also had cystic fi bro- best friend in elementary school was sis. Through all her hospital visits, school absences, breathing treat- longer had the strength to walk. In all ments, physical therapy, etc., Kelly the years Kelly and I had known each In this issue of and I were inseparable. With each limi- Transplant Chronicles other, I had never known her to be tation the doctors placed on her, Kelly anything but optimistic. Cystic fi brosis proved everyone wrong and succeeded was as much a part of Kelly as the online at: www.kidney.org/recips/transaction/chronicles.cfm ✓ Editor’s Desk ...... Page 2 at all she set out to do. Kelly lived to color of her eyes. It was not a disease, celebrate her 33rd birthday, when no just a fact she accepted. ✓ Recipient Voices ...... Page 2 one expected her to live past her fi fth. ✓ Power of "Thank You" ...... Page 3 One day, while instant messaging each hronicles A few years ago, after meeting a won- C other, Kelly told me she was making ✓ Heart Health ...... Page 4 derful man and having two children, videos and scrapbooks for her chil- ✓ 29 Years After Transplant ...... Page 5 Kelly was placed on the list for a dren, as she knew in her heart that she double lung transplant. I had moved ✓ Transplant News Digest ...... Page 6 would not receive the transplant in across the country, but Kelly and I time. I sat, tears streaming down my Transplant ✓ Understanding Knee Pain ...... Page 7 kept in contact. We were so excited by face, as I tried to imagine life without the prospect of Kelly’s receiving the ✓ People Like Us! ...... Page 8 Kelly and the monumental ordeal she transplant. Days turned into months, and her family were facing. ✓ Communication ...... Page 10 months into a year, while Kelly ✓ NKF Resources ...... Page 11 underwent treatments and tests, and When Kelly died, I was numb. The was permanently put on oxygen. She numbness turned into anger as I ranted ✓ Balancing My Life ...... Page 12 was forced to ride a scooter to take her against the injustice of the need for small children to the park, as she no someone to die, so that others could

Read the latest issue of Continued on page 9

© Copyright 2007 Published by the for transplant recipients of all organs and their families. ISSN# 1524-7635 National Kidney Foundation, Inc. 01-70-1113 Laurel Williams, editoedito r’r’ss deskdesk RN, MSN, CCTC Editor-in-Chief WE RECENTLY HAD A SEASON OF church and community, and left a deep Transplant Chronicles is published by the National MANY CELEBRATIONS: RELIGIOUS, imprint on the lives she touched. She Kidney Foundation, Inc. NATIONAL, GOVERNMENTAL, AND loved to dance the night away with her Opinions expressed in this publication do not necessarily represent the position of the National PERSONAL CELEBRATIONS. All have husband. Her grandson said she was a Kidney Foundation, Inc. their unique meanings, traditions and “babe” in her younger years. He said Volunteer Editorial Board: customs, and are often shared with fam- her memory lives on in the smile of Laurel Williams, RN, MSN, CCTC ily, friends, neighbors and guests. Not too his mother, the mischievousness of his Editor-in-Chief long ago, I was at a celebration of life—a uncle and the incredible love engulfing University of Nebraska Medical Center Omaha, NE celebration of the life of a woman I had the family. Megan A. Tichy, RD known for more than 20 years. She was It made me stop and think that maybe San Francisco, CA one of our early transplant patients—a in this busy world, we do not take Dean S. Collier, PharmD pioneer of sorts. She was a mother and University of Nebraska enough time to really know people and grandmother and lived a long, active life. friends. What would our celebrations, Omaha, NE I thought I knew her fairly well after all Jack Fassnacht or even our daily interactions, be like Chicago, IL these years. I knew she liked to paint; if we spent a few more minutes ask- she was very involved in her family and Joshua S. Goldberg, teen editor ing questions about the lives of others, Encino, CA helped her husband on their farm. I knew actively listening, recognizing and Shirley Schlessinger, MD that she had a great laugh and was always appreciating their unique talents, abili- University of Mississippi Medical Center in charge of where her treatment was Jackson, MS ties, traditions and customs? I wonder going (we usually negotiated medical if those few extra moments would Victoria L. Schieck, RN, BSN, CCTC changes and never just told her what University of Michigan Health System enrich our lives? I wonder if those Ann Arbor, MI to do). extra moments might actually ease our Debra J. Tarara, RN, BSN, CCTC stress. I wonder if those extra moments Mayo Clinic Sitting at her funeral service, listening Rochester, MN to the many stories and kind words, I would bring much more back to us than we imagine. Rebecca Hays, MSW realized that there was much more to University of Wisconsin Hospital this woman and her life than I had ever Madison, WI As Muhammad Ali said, “There are imagined. She did not just paint, she was billions of people in the world, and Chris L. Wells, PhD, PT, CCS, ATC an accomplished artist. Her pictures were University of Maryland every one of them is special. No one Baltimore, MD prominently displayed and depicted her else in the world is like you.” It is my Jim Warren, MS family and life in Nebraska. She was an New Year’s resolution that we find Transplant News accomplished musician, playing both the Baltimore, MD those extra minutes, and look for piano and organ, enjoying a wide variety what is special in others, to possibly Editorial Office: of musical styles such as country, popu- National Kidney Foundation, Inc. make the difference in their lives and 30 East 33rd Street, New York, NY 10016 lar, and church hymns. She enjoyed farm in our own. 800.622.9010, 212.889.2210 life, taking in many dogs and cats. She www.kidney.org named each one of her cows and, through We on the Editorial Board hope you Editorial Director: Cathy Paykin, MSSW the years, went through the alphabet and your families had the happiest of Executive Editor: Gigi Politoski twice naming them. She was active in her holidays and wish you a warm 2007. TC Managing Editor: Sara Kosowsky Publications Manager: James McCann Design Director: Oumaya Abi Saab let your VOICE be HEARD Constituent Council Manager: Erin Kahle

What are your experiences with medication side effects? In what ways did you cope?

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2 Transplant Chronicles, Vol. 13, No. 4 The Power of Two Little Words: "THANK YOU"

By Dr. Shirley Schlessinger

The highlight of the conference was ($2,000–5,000) Did you meet your families and our living donors. The an open-forum discussion with six recipient? (Some said “yes”; some OPO reports outcomes of the dona- remarkable people who had each “no.”) Did you have post-operative tion to a deceased donor’s next-of-kin. donated one of their kidneys to a com- complications? (Most said “no,” some We have donor support groups across plete stranger. I had always been a “yes.”). The questioning went on and Washington state. When asked, we bit suspicious of people who call our on. The answers were thoughtful, facilitate communication from donors organ recovery organization (OPO) heartfelt and poignant, and convinced to recipients and vice-versa, with ano- and declare their desire to “donate an me that there truly are special people nymity preserved as requested. But, organ to anyone who needs it.” These in this world. When asked what the as a transplant physician, I had never calls have traditionally come to us on most rewarding part of the whole personally, actively encouraged our New Year’s Day from people highly experience was, it was somewhat sur- recipients to say “thank you.” I myself intoxicated and clearly not thinking prising to hear this answer: The thank had never said “thank you” to these quite straight. In stark contrast, the you note I got from my recipient. incredibly special people. symposium participants were not only sober, but clearly intelligent, function- I came home from that meeting with I’ve since learned that there are trans- al and service-oriented human beings. lots to think about. I’d clearly mis- plant programs that do enthusiastically We questioned them intensely: Why judged humanity. There were sane encourage their patients to say thank would you choose to undergo a major people who thought it was perfectly you. “Thank you” seems so easy to surgical procedure for someone you reasonable to donate a kidney to say, but somehow we don’t say it don’t even know? (A typical answer: anyone who might need it, and to frequently enough. I encourage all of I have two kidneys; I only need one.) even pay out-of-pocket for the you who have been lucky enough to How did you learn about transplanta- opportunity to do so. As a transplant receive a life-saving transplant to take tion and donation? (Answers: Internet, professional, I needed to be more a minute today and jot a brief note to newspaper, magazines, an organ pro- open to non-traditional donors, and your donor, telling them what a curement organization or a transplant look for ways to facilitate innovative difference they’ve made in your program.) How was the evaluation approaches to donation. But, more life. If you’re waiting for an organ, process to donate? (Long and obstruc- importantly, the most essential thing I hope you’ll make saying thank you tive; transplant professionals were we can all do for our donors is to sim- a priority when your time comes. This suspicious of my motives; they delib- ply say, “Thank you!” small step that can mean so much erately delayed evaluation to give me to some very extraordinary people. plenty of opportunity to back out.) Our OPO routinely does annual cer- Thank you! T C Did you have out-of-pocket costs? emonies to honor our deceased donor

DONATE YOUR USED CAR to the National Kidney Foundation. The money raised through this charitable contribution plan will beneﬁ t programs in research, patient services, organ donation and public education. And, you may ﬁ nd yourself in the express lane for a tax deduction. All you need to do is call 800.488.CARS (2277) and we will send you a packet with a self-addressed envelope so you can mail back the signed title and odometer statement. Once you return the completed packet, the Foundation will contact you to arrange for a free pick- up. Vehicles are sold either at auction or for parts. Talk about getting good mileage!

Transplant Chronicles, Vol. 13, No. 4 3 HE RT HEALTH: Know Your Fats By Suzanne Gibson, RD

The following information will help High-Density Lipoprotein (HDL)— Monounsaturated Fats (MUFA)— you to understand the different kinds HDL cholesterol is sometimes called Monounsaturated fats typically remain of fat in foods and how they can affect “good cholesterol.” HDL carries cho- liquid at room temperature. These fats your heart health. lesterol from other parts of your body are found in vegetable oils (olive oil, back to your liver. The liver removes peanut oil and canola oil). MUFAs low- Knowing which fats raise your LDL the cholesterol from your body. The ers total blood cholesterol by lowering cholesterol and which ones don’t is the higher your HDL cholesterol level, LDL cholesterol without lowering HDL fi rst step in lowering your risk of heart the lower your chance of getting heart cholesterol. Too much of any of these disease. Saturated fat, trans-fatty disease. fats will increase dietary fat intake, and acids and dietary cholesterol raise excess body fat may increase choles- cholesterol. Monounsaturated fats Some fats are considered “bad fats” terol levels. and polyunsaturated fats don’t. because they tend to worsen blood cholesterol levels. Polyunsaturated Fats (PUFA) — Cholesterol — Cholesterol is a waxy, Polyunsaturated fats are usually liquid fat-like substance that is found in every Saturated Fats (SFA) — Saturated fats at room temperature. PUFAs are found cell of the body. Your body needs some are usually solid at room temperature. in vegetable oils (corn oil, saffl ower oil, cholesterol in order to function prop- All animal fats, such as those in meat, soybean oil and sunfl ower oil). PUFAs erly. Your body is capable of making poultry, and dairy products (cheese, are also present in fi sh and fi sh oils. all the cholesterol it needs. Dietary milk and ice cream), are saturated. Veg- PUFA lower LDL cholesterol and total cholesterol comes mainly from animal etable oils also can be saturated (palm cholesterol but they also lower HDL products, such as meat, poultry, fi sh, oil, palm kernel and coconut oil). SFA cholesterol (HDL cholesterol is the and dairy products. Plant foods contain are very unhealthy fats and they make “good stuff”). Therefore, this fat should no cholesterol. Your body uses choles- the body produce more cholesterol, be limited to a certain degree. terol to make hormones, vitamin D, and which may raise blood cholesterol substances that help you to digest foods. levels. Excess saturated fat is also re- Although the different types of fat lated to an increased risk of CVD. The Having too much cholesterol in your discussed have varied (and sometimes amount of cholesterol found in foods blood can lead to complications. De- puzzling) effects on health and dis- is not as important as the amount of posits of cholesterol can build up inside ease, the basic message is simple: do saturated fat. Of all the fats, saturat- your arteries. These deposits, which are away with the “bad fats” in your diet ed fat is the most potent determinant called plaque, can narrow your arter- and replace them with “good fats.” of blood cholesterol levels. ies enough to slow or block the fl ow Limit saturated fats, and try to elimi- of blood. This narrowing process (aka Trans-Fatty Acids (TFA) — These fats nate trans-fatty acids from partially atherosclerosis) commonly occurs in are called hydrogenated fats. These hydrogenated oils. Replace saturated arteries that nourish the heart. Luck- are fats that are created when oils are and trans-fats with polyunsaturated and ily, the buildup of cholesterol can be “partially hydrogenated.” The process monounsaturated fats. slowed, stopped, and even reversed. of hydrogenation changes the chemical For more detailed information, please structure of unsaturated fats by add- Cholesterol-carrying lipoproteins play a see your registered dietitian. ing hydrogen atoms to make the fats key role in the development of athero- more saturated. Hydrogenation is what Suzanne Gibson is a registered dietitian who sclerotic plaque and cardiovascular turns liquid oil into stick margarine or specializes in renal nutrition. She currently disease (CVD). The two main types of works at the UCSF/Mt. Zion Medical Center shortening. Unfortunately, this process lipoproteins (HDL and LDL) basically Hemodialysis Unit in San Francisco. TC is what contributes to elevated blood work in opposite directions. cholesterol levels and increases heart Call the NKF at 800.622.9010 Low-Density Lipoprotein (LDL) — disease risk. for a copy of Keeping Your LDL cholesterol is sometimes called Heart Healthy When You “bad cholesterol.” High LDL cholester- Some fats are “good fats” because they Have a Kidney Transplant: ol can lead to a buildup of cholesterol can improve blood cholesterol levels. What You Should Know About Lipids, (order #: in arteries. The higher the LDL level in (English) 11-50-2108; (Spanish) your blood, the greater chance you have 11-50-2192) of getting heart disease. 4 Transplant Chronicles, Vol. 13, No. 4 TWENTY-NINE YEARS AFTER TRANSPLANTATION By Pamela Reid, Kimberly Reid Costa and Leon Reid, Recipient family

We waited at the end of the driveway We were 11, 13 and 14 years old at As with anything, there is uncertainty. for my Dad to get home from work. that time. We learned cooperation, No one knows how much longer her He rushed out into the foggy night, patience, and determination from this. kidney will last. We take it one day at panicked. We waited by the phone for a time and feel blessed for every day. the news on Mom’s condition, sure Finally, after almost two years of that Dad was there by now. But, little sickness, dialysis treatments, worry- Kimberly Reid Costa is Gwenice’s did we know, on the way to the hos- ing, waiting, hoping and false alarms, oldest daughter; Pamela is in the pital, Dad hit a calf on the road and Mom was to receive a kidney trans- position of “dreaded” middle child, rolled his car into a ditch. We heard plant. It was four days from her 40th and brother Leon is the youngest. a roar coming down the road and ran birthday and she would receive the Gwenice just turned 70 and lives with to the door to see what it was. A tow most wonderful birthday present that her husband Emmitt in Lawrence, truck carrying Dad’s crumpled car could be given, a kidney, and from Kansas. TC was coming up the drive. We thought a complete stranger’s family. This we had lost both parents that night— would mark the day that she and until we saw Dad get out of the tow her family would forever become truck, run into the house, grab a set of indebted to, and grateful for, this anonymous family for the most keys to an old truck, and rush out. Reducing Cancer Gwenice Reid's transplant took place in 1977. "Today, 29 years later, Risk after her kidney is ﬁ ne. We attribute her kidney longevity to her single-minded Transplantation determination to stay on her medication and take care of herself. She never diverts from her schedule of medication." This new 12-page booklet —Mom's Nurse discusses why recipients have an increased risk Again, he sped away into the fog difficult decision they would ever and dankness. Again, we waited by make, the gift of an organ donation for certain the phone for his call, which came from a deceased donor—someone's cancers, the next morning. Mom had pulled lost loved one. symptoms; through. to watch It was just one of many scary nights. Judy Gratehouse is now a Director of for; and We learned quickly how much the Transplant, but in those days she was world changes when someone you Mom’s nurse. Judy remembers the protective love is deathly ill. It was amazing surgery and says, “Gwenice Reid’s measures. how our perspective on life changed deceased donor transplant took place with Mom’s illness. We didn’t take in 1977. Today, 29 years later, her (Order #: 11-70-0653) things quite for granted as we did kidney is fine. We attribute her kid- before. We came to realize that this ney longevity to her single-minded was really a life-threatening situation determination to stay on her medi- Contact NKF at and that scared us; that can have a cation and take care of herself. She [email protected] or profound effect on a child. Mom had never diverts from her schedule of 800.622.9010 to receive three children. medication.” a copy.

Transplant Chronicles, Vol. 13, No. 4 5

TransplantTransplant NewsNews DigestDigest from the editors of Transplant News By Jim Warren, editor and publisher Transplant News, edited and published by Jim Warren, is a twice-monthly newsletter for the transplant community focusing on developments in organ, tissue, eye and bone marrow procurement and transplantation. Transplant News Digest is written exclusively for quarterly publication in Transplant Chronicles. For more information about Jim Warren Transplant News, visit: www.trannews.com

Donate Life America launches Incidence of ESRD in U.S. signifi- In addition, the researchers found Donor Designation Collaborative cantly higher than European coun- American and Norwegian ESRD Donate Life America (formerly the tries; higher obesity, diabetes rates patients were similar in most char- Coalition on Donation) is launching a cited acteristics, including age and level new initiative using the collaborative The incidence of end-stage renal of remaining kidney function when approach to increase the number of disease (ESRD) in the U.S. is signifi- starting dialysis. However, U.S. organ, tissue and eye donors in cantly higher than European countries patients had strikingly higher rates the U.S. and may be due to a much higher of obesity and diabetes, two major incidence of obesity and diabetes, and closely related kidney disease The goal for the Donor Designation risk factors. Collaborative is to close the gap according to a new study. between the 90 percent-plus Ameri- However, the higher rate of ESRD, “Obesity and physical inactivity lead cans who believe organ, eye and compared to European countries, to high blood pressure and type 2 tissue donation is the “right thing to such as Norway, reflects a greater diabetes, which are now the most do” (as identified in a recent national worsening of kidney disease in the important causes of ESRD,” Hallan quantitative study) and the estimated U.S.—not a higher number of people wrote. Americans also made their 20 percent who have effectively docu- in the early stages of chronic kidney first visit to a nephrologist signifi- mented a donation decision via a state disease, researchers wrote in the cantly later. donor registry. Journal of the American Society of “Early referral to a nephrologist is The aim of the new collaborative Nephrology. important,” Hallan said. “It often effort is to increase the number of A research team, led by Stein results in better control of diabetes “actionable donor designations” Hallan, MD, of St. Olav Hospital and high blood pressure, as well as in the U.S. to 100 million, which in Trondheim, Norway, compared early and more adequate correction would mean one in every three of large population data bases includ- of anemia and disturbances in elec- all 300,000 million Americans will ing 65,000 Norwegian and 20,000 trolyte balance. This reduces the rate take the necessary steps in their home American individuals. Their goal was of kidney disease progression, and in state to register to be a donor. to try and find the reason why the many patients postpones the start of dialysis.” Currently, 61.8 million Americans incidence of ESRD is so much higher have joined a donor registry, which in the U.S. than Norway. Hallan and colleagues concluded the represents 21 percent of the U.S. The researchers began with an study showed the lower incidence public. assumption that there was a difference of ESRD in Norway reflects a lower rate of progression from the early Donate Life plans to utilize the same in the rate of CKD, but found there was virtually no difference in the two stages of CKD to dialysis, rather Collaborative methodologies that than a smaller pool of individuals have helped large donor hospitals, populations—11 percent in the U.S. versus 10.4 percent in Norway. at risk. “We think strong programs transplant centers and organ procure- to prevent diabetes and obesity and ment organizations to large increases However, once CKD was present, manage CKD are needed to preserve in donation to achieve similar break- the risk of progression to ESRD the favorable situation in Norway throughs in actionable donor was 2.5 times higher for Americans and stem the current ESRD epidemic designations. than Norwegians. The risk was in the U.S.,” Hallan concluded. TC barely affected by adjusted analy- sis, comparing white Americans to Norwegians of similar age, sex, and diabetes conditions.

6 Transplant Chronicles, Vol. 13, No. 4

UNDERSTANDING Knee Pain TransplantTransplant NewsNews DigestDigest By Chris Wells, PhD, PT from the editors of Transplant News By Jim Warren, editor and publisher This article will de- tion include pain, particularly when 5–10 minute set of exercises to warm Transplant News, edited and published by Jim Warren, is a twice-monthly newsletter for the transplant commu- scribe why so many bending or climbing steps; stiffness up the muscles. Exercises that are nity focusing on developments in organ, tissue, eye and bone marrow procurement and transplantation. Transplant of us experience this that improves with gentle movements; designed to improve strength should News Digest is written exclusively for quarterly publication in Transplant Chronicles. For more information about Jim Warren pain and what you or grinding during knee movement. be completed in a pain free move- Transplant News, visit: www.trannews.com can do to help control The underlying causes of this dysfunc- ment, slowly with the goal to com- or rid yourself of this tion are generally related to quadriceps plete three sets of 10–15 repetitions. Donate Life America launches Incidence of ESRD in U.S. signifi- In addition, the researchers found disabling condition. weakness, tightness of other muscles In addition to the basic stretching and Donor Designation Collaborative cantly higher than European coun- American and Norwegian ESRD of the leg (hamstrings, calf muscles, strengthening exercises provided in tries; higher obesity, diabetes rates patients were similar in most char- Donate Life America (formerly the The knee is comprised of three bones, and hip muscles), and poor alignment this article, you should seek medi- cited acteristics, including age and level Coalition on Donation) is launching a femur (thigh bone), tibia (shin bone), of bones from the spine all the way cal attention to obtain an x-ray and of remaining kidney function when new initiative using the collaborative The incidence of end-stage renal and the patella (knee cap). The rela- down to the small bones of the feet. thorough rehabilitation evaluation, starting dialysis. However, U.S. approach to increase the number of disease (ESRD) in the U.S. is signifi- tionship between the femur and the particularly if the exercises do not patients had strikingly higher rates organ, tissue and eye donors in cantly higher than European countries patella is primarily involved in ante- The basic treatment for adults with resolve your symptoms. A physical of obesity and diabetes, two major the U.S. and may be due to a much higher rior knee pain in adults. The patella is anterior knee pain fi rst involves de- therapist will provide you with an and closely related kidney disease a bone contained within the tendon of creasing the infl ammation and pain. The goal for the Donor Designation incidence of obesity and diabetes, individual rehabilitation program risk factors. the quadriceps or front thigh muscles. It is recommended to apply an ice Collaborative is to close the gap according to a new study. that includes advanced stretching and The patella normally tracks up and bag to the knee for 15–20 minutes between the 90 percent-plus Ameri- However, the higher rate of ESRD, “Obesity and physical inactivity lead strengthening, as well as techniques down in a groove of the femur. The several times a day and avoid activi- cans who believe organ, eye and compared to European countries, to high blood pressure and type 2 to reduce pain. The therapist’s pro- most common cause of anterior knee ties that aggravate the symptoms. The tissue donation is the “right thing to such as Norway, reflects a greater diabetes, which are now the most gram may also include therapeutic pain occurs when the patella is not rehabilitation program should involve do” (as identified in a recent national worsening of kidney disease in the important causes of ESRD,” Hallan taping to improve the tracking the pa- tracking within this groove properly. fl exibility exercises, strengthening of quantitative study) and the estimated U.S.—not a higher number of people wrote. Americans also made their tella over the femur, shoe inserts, and The cartilage on the underside of the the quadriceps muscles in a pain-free 20 percent who have effectively docu- in the early stages of chronic kidney first visit to a nephrologist signifi- a recommendation for a knee brace. patella and the surface of the femur range of motion, and avoiding wear- mented a donation decision via a state disease, researchers wrote in the cantly later. becomes infl amed and swollen. Over ing shoes with high heels. All stretches donor registry. Journal of the American Society of “Early referral to a nephrologist is time the cartilage wears abnormally, should be done slowly, without bounc- Nephrology. important,” Hallan said. “It often The aim of the new collaborative resulting in osteoarthritis or degenera- ing, and held for at least 30 seconds NOTE: Consult with your licensed results in better control of diabetes effort is to increase the number of A research team, led by Stein tive arthritis. The most common symp- with three to fi ve repetitions. Stretch- physical therapist before beginning and high blood pressure, as well as “actionable donor designations” Hallan, MD, of St. Olav Hospital toms for this type of knee dysfunc- ing is best done after completing a these or any other exercises. TC in the U.S. to 100 million, which in Trondheim, Norway, compared early and more adequate correction would mean one in every three of large population data bases includ- of anemia and disturbances in elec- all 300,000 million Americans will ing 65,000 Norwegian and 20,000 trolyte balance. This reduces the rate take the necessary steps in their home American individuals. Their goal was of kidney disease progression, and in STRETCHING: Lateral Hip Stretching: state to register to be a donor. to try and find the reason why the many patients postpones the start Stand with good posture and with your left leg of dialysis.” Quadricep Stretching: crossed behind your right. Stand by a wall or counter Currently, 61.8 million Americans incidence of ESRD is so much higher in the U.S. than Norway. Hallan and colleagues concluded the Standing with good posture near a surface, such as a for balance. Move your pelvis to the left until you have joined a donor registry, which table or chair, for support, with your knee bent and feel a stretch along the hip or down the outside of the represents 21 percent of the U.S. The researchers began with an study showed the lower incidence pointing down towards the fl oor, pull your ankle leg. Hold for 30 seconds. Relax. Repeat 3–5 times. public. assumption that there was a difference of ESRD in Norway reflects a lower towards your buttocks until you feel a stretch. Hold for Repeat for the other leg. rate of progression from the early 30 seconds. Relax. Repeat 3–5 times. Repeat for the Donate Life plans to utilize the same in the rate of CKD, but found there other leg. was virtually no difference in the two stages of CKD to dialysis, rather Collaborative methodologies that than a smaller pool of individuals STRENGTHENING: populations—11 percent in the U.S. This exercise can also be done lying on your side if you have helped large donor hospitals, Straight Leg Raises: versus 10.4 percent in Norway. at risk. “We think strong programs are unable to stand on one leg. transplant centers and organ procure- to prevent diabetes and obesity and Lay on your back with your left knee bent ment organizations to large increases However, once CKD was present, manage CKD are needed to preserve to protect your back. While keeping your in donation to achieve similar break- the risk of progression to ESRD the favorable situation in Norway Hamstring and Calf Stretching: right knee straight, lift your leg to the throughs in actionable donor was 2.5 times higher for Americans height of the left knee. Pause and lower and stem the current ESRD epidemic Sit with your legs out in front of you. While keep- down slowly. When your heel touches designations. than Norwegians. The risk was in the U.S.,” Hallan concluded. TC ing your back and one knee/leg straight, pull your the surface, immediately lift leg up again. barely affected by adjusted analy- other foot up towards your body and lean forward Repeat 10–15 times or to fatigue. Rest 20 sis, comparing white Americans to until you feel a stretch. Hold for 30 seconds. Re- seconds and repeat for three sets. Advance Norwegians of similar age, sex, and lax. Repeat 3–5 times. Repeat for the other leg. this exercise by completing in standing position or adding diabetes conditions. weight to ankle. Continued on page 8

Transplant Chronicles, Vol. 13, No. 4 7 STRENGTHENING: continued from page 7 Squats: Step Ups: Stand with good posture with your hands on your Using a stair, a small step stool, or hard cover book, hips or across your chest. While keeping your eyes place your foot onto the step. The height of the step focused upward, lower your buttocks slowly towards should not cause pain when your step up. While keep- the seat of a chair. Your weight should be on your ing your knee over your ankle and your body weight heels and your knees should stay over your feet. onto your heel, step up onto the elevated surface. Lower your buttocks until you touch the seat or expe- Avoid pushing off the ﬂ oor with the other leg. Use rience discomfort. Pause and then stand up keeping a chair or countertop for balance. Pause and slowly your knees over your feet. Repeat 10–15 times or to lower yourself back to the ﬂ oor. Pause. Repeat 10–15 fatigue. Rest 20 seconds and repeat for three sets. times or to fatigue. Rest 20 seconds and repeat for three sets. Advance exercise by increasing the height of the step or by holding a weight.

In children, anterior knee pain is fering from Osgood Schlatter’s Dis- commonly related to a condition ease. This condition can become called Osgood Schlatter’s Dis- chronic and disabling to the child. For copies of ease, which involves an infl amma- For a pediatric transplant recipient tion where the quadriceps muscles it is very important to have a knee our booklet attach to the tibia bone. It usually x-ray to evaluate the health of the Planning for develops as the quadriceps become bone. The child should be referred stronger than the bone attachment to a rehabilitation clinic where Emergencies: as the child matures. The child typ- the child can work with a physical ically complains of anterior knee therapist and an athletic trainer to A Guide for pain when quadriceps contract devise an individual rehabilitation People with during running, kicking and jump- program. The program should in- ing. The bony bump or tuberosity volve improving the child’s fl exibil- ChrChroniconic Kidney just below the patella is sensitive to ity; examining the bony alignment touch and over time the tuberosity of the legs and possibly making Disease, (order #: enlarges. shoe inserts; controlling the pain; 11-10-0807) call the NKF and, fi nally, slowly returning the It is important to seek medical in- child to activities pain-free. at 800.622.9010. tervention for the child who is suf-

TUURNRN OONN TTHEHE PPOWEROWER of "People Like Us!" TracyTracy Fortson,Fortson, Managing DirectorDirector of NKF Constituent ServicesServices

■ Are you interested in becoming an empowered advocate forfor your hehealthalth or tthathat of your loved ones?

■ Do you want to learn more about important issues related to chrchronionicc kikidneydney disease (CKD), dialysis or organ/tissueorgan/tissue donation or transplantation?transplantation?

If so, the National Kidney Foundation (NKF) invites you toto jjoioin ““PeoplePeople LLikeike Us!” the fastest-growing group of patient advocates dedicateddedicated to iimprovingmproving the lives of people affectedaffected by CKD and to helping individualsindividuals iinn tthehe donadona-- tion and transplantation communities.

Whether you have been active on issues, or have little to no patient advocacy experience, we are looking for people like YOU to join “People Like Us!” Together, we can continue our important mission of Making Lives Better!

For more information about the NKF’s “People Like Us!” please visit T www.nkfpeoplelikeus.org or call 800.622.9010. C (booklet order #: 01-40-0102)

8 Transplant Chronicles, Vol. 13, No. 4 The Gift I Received cont'd from page 1 live. If only more people were In April, I received word that my test me, starting IVs, explaining procedures, donors— if only, if only, if only. . . results were back, and my husband and drawing on my belly, and telling me I needed to attend a “family meeting” how great my donation was—I was A few months later, the loss of Kelly with the transplant team. I was very oblivious . . .all I could think of was the still strong, I began speaking about anxious and excited! Upon arriving, recipient and her family. my frustration to a friend who is a we walked into the conference room renal dietitian. Having signed an organ and met six or seven members of the I woke up in recovery, my mouth dry, donor card to be a deceased donor over team. I felt like I was in a job interview very groggy, and was wheeled back to 20 years ago, I was surprised when and, in a way, I was! The nephrologist my room, where I found my husband she told me about living donation. I couldn’t help Kelly anymore, but I "I began discussing living donation with my husband and teenage could help someone else. I knew noth- son. I believe they thought I was crazy, that it would soon pass, and ing about kidney disease. I did not even know where the kidneys were located, that it was just a phase I was going through—despite it all, they let alone what they did and how they supported my decision." affected your daily life. I began discussing living donation with my husband explained I had a kidney stone due to pacing the fl oor with his brother. It is and teenage son. I believe they thought improper diet and water consumption. a little sketchy, but I remember ask- I was crazy, that it would soon pass, I promised— swore—that I would eat ing how the recipient was and being and that it was just a phase I was going healthier and drink more water.... informed that the recipient’s surgery through—despite it all, they supported had gone very well. my decision. Over a year passed while All members of the team questioned I researched living donation and we my husband and me. What would we The next few days are foggy, as I continued to discuss the possibility of do if one of our children needed a reacted to the pain medications and my becoming a donor. kidney? Why was I so intent on do- became quite ill. Further, we discov- ing this? Did my family support me? ered that I was allergic to the adhe- sive on the bandages. Neither of these In October 2004, I began contacting Who would help care for me after problems had ever occurred in any transplant units at area hospitals to surgery? Would the recuperation time of my six previous abdominal surger- gather more information. For logistical affect us fi nancially? Was I concerned ies! I went home, sore but proud, on purposes, my family and I fi nally decid- about the scars? Did we understand May 20, 2005. ed that I would work with the Syracuse the risks associated with surgery? We University Hospital’s Transplant Unit. were ready for the questions, as they After speaking with the transplant were all things we had considered and The NKF of Central New York wrote coordinator and fi lling out mountains of discussed previously. Finally, I was about me in their newsletter. On June 5, paperwork, I began testing. cleared to donate! I manned a booth at the Kidney Walk. I was tired, sore and hot, but I met sev- Unfortunately, as I teach at a local eral wonderful people who had either My husband and I decided that it was community college and could not take donated or received kidneys. It was time to let our parents know what I leave, I had to wait until the semes- great. Shortly after the Walk started, was doing. We had chosen to keep it ter was over before I could have the one of the National Kidney Foundation a secret as we didn’t want to hear any surgery. employees and a couple approached negative comments, nor did we wish to me. I was completely shocked when the “jinx” the process. While our parents One week before surgery, I completed my pre-op testing and was told that woman told me that their granddaugh- had many questions, they respected ter had received my kidney! I wasn’t our decision and supported our goal the recipient would be a six-year-old little girl. supposed to meet the recipient’s fam- of donating. We simply asked that the ily for a year, but they had read the ar- surgery not be discussed with outsiders The night before the surgery, I was ticle and wanted to thank me. I started as many people have very strong feel- restless and withdrawn. Fortunately, my to cry. I was able to see the recipient ings about organ donation, and I was husband understood and left me alone for a moment, as she ran up laughing not prepared to defend my donation. I with my inner thoughts, just holding me to her grandparents and jumped in had to concentrate on my health and the while my mind churned. The morning their arms. It was the most beautiful testing, not negative opinions. of surgery, it seemed as though hun- sight I had ever seen. TC dreds of people were surrounding

Transplant Chronicles, Vol. 13, No. 4 9 COMMUNICATION ON THE WAY to a "New Normal" By Rebecca Anderson, PhD

FOR PATIENTS RECOVERING ❚ LEARNING HOW TO ARGUE. of the important facts being provided. FROM A TRANSPLANT, A Disagreement is normal. Remember Taking a family member or friend or a “NEW NORMAL” WILL EMERGE. people don’t always say what they note pad along may prove useful. It is Getting to the “new normal” is a mean or mean what they say. There also a good idea to write down ques- process. In fact, there may be more are rules for fair fighting. tions ahead of time. than one “new normal” during the transplant process. These normal ❚ TAKING ADVANTAGE OF “I” Regardless of whether you are wait- adjustments occur not only for you, MESSAGES. Saying “you” invites ing for a transplant or recovering from but also your spouse, children and defensiveness. one, you and your family can have family as a unit. A part of the process “normal” times. Eventually, if things leading to this adjustment is good ❚ MAKING EXPECTATIONS go as planned, you will finally arrive communication. Good communication REASONABLE. As you move at a time when things seem normal with your spouse or partner, children, toward the "new normal," things again. As you approach feeling nor- extended family, health care providers will change. Try to be patient. mal, remember to enjoy pleasures, and others, such as employers, activities and the responsibilities of is important. daily life. Try to stay as active as Communication with children can your physical limits allow. Adjusting often be challenging. In general, it General tips for good to lifestyle changes may take some communication include: is important to address issues in an time. Grief is a normal part of adjust- age-appropriate manner. Children still ment and may take some time and need structure to feel safe and have patience to get through. ❚ LISTENING TO UNDERSTAND. time to play and have fun. Try to There is a difference between hear- avoid taking lack of attention or assis- If you feel you need assistance with ing and listening. It is possible to tance from children or adolescents coping or communicating, resources hear a conversation but not really personally because kids will be kids. are available. Support groups are listen or pay attention to what is often available at hospitals and being said. Illness can stress a relationship and through organizations such as the may lead to irritability. Try to avoid National Kidney Foundation. Social ❚ AVOIDING HAVING TO BE angry exchanges. Express feelings in workers and transplant coordinators RIGHT. Sometimes we have to let an appropriate manner. During sick- may offer useful assistance. Your doc- go of being recognized as being ness, relationship roles will sometimes tor or physician assistant may make a right to get what we want. reverse. Talking about role changes referral to a psychologist or psychia- and expectations is important. To trist for assessment or treatment. ❚ NOT RUNNING AWAY. It’s OK keep on track for the “new normal,” to ask for a time out to calm down spend time together with your spouse It is important to recognize what you and collect thoughts, but running or partner doing enjoyable activities. still have. Chronic illness is not fair away is unfair to the communication Sometimes when we’re stressed we and it is normal to experience ups and process. If you must go, set a time forget to have fun. downs. Effective communication with to pick up the conversation. family, friends and your health care Communication with the health team can help you to navigate the ❚ TIMING IS IMPORTANT. It is care team is an important factor in ups and downs on the road to a “new best to avoid discussion of impor- the recovery process. Patients and normal.” tant issues when the other person is family members who are informed distracted, tired, angry or otherwise and engage in proactive self-care. Rebecca Cogwell Anderson, PhD, unavailable. Expectations of the health care team is a Professor and the Director should be reasonable for both patient of Psychological Services at the ❚ USING SIMPLE MANNERS. and provider. Sometimes when dis- Transplant Surgery Unit of the Remember to say "please" and cussing treatment options with a pro- Medical College of Wisconsin. TC "thank you." vider, patients fail to remember some

10 Transplant Chronicles, Vol. 13, No. 4 NKF RESOURCES

■ How to Be an Ambassador for Donation and Transplantation — Order No. 13-60-0659

■ Bill of Rights and Responsibilities (booklet) — Order No. 11-70-0654

■ Kidney Transplant (brochure) — Order No. 11-10-0304

■ Issues for TodaysTodays Recipients [Depression, Empowerment, Medicare] (book) — Order No. 03-70-0601

■ Keeping YourYour Bones Healthy When YouYou Have a Kidney TransplantTransplant — (brochure) Order No. (English) 11-50-2208;11-50-2208; (Spanish) 11-50-229211-50-2292

■ Nutrition and TransplantationTransplantation (brochure) — Order No. 11-10-0404

■ TakingTaking Control:Control: Money Matters for People with ChronicChronic KidneyKidney DiseaseDisease (book) — Order No. 01-10-0250

■ Kidney Learning System Catalog [of all educational materials] — Order No. 05-10-0100

■ Waiting for a Transplant (book) — Order No. 11-70-0656

■ From Illness to Wellness: Life After Transplantation (book) — Order No. 11-70-0657

■ New Onset Diabetes: A Guide For Kidney Transplant Recipients (booklet) — Order No. 11-70-0658

■ National Communication Guidelines (book)— Order No. 12-60-0631

■ What Those with Kidney Transplants Should Know About Medicare Prescription Drug Coverage (Part D) — Order No. 01-10-0233 From Illness to

Life After Transplantatio n ■ Writing to Transplant Recipients (brochure) — Order No. 13-60-0635

■ Writing to Donor Families and Living Donors (brochure) — Order No. 13-60-0634

To order any of these materials call the National Kidney Foundation at 800.622.9010. TC

“COFFEE HOUSE CONVERSATIONS” is a new program from the National Kidney Foundation’s "People Like Us!" They are gatherings of recipients who come together to discuss a particular topic of interest. Discussions planned for 2007 are “Reducing the Risk of Cancer After Transplantation,” “Understanding Depression,” “Preparing for and Coping with Disasters and Emergencies” and “Empowerment and Advocacy.” These discussion groups will be held in 2007 in the following areas: the Alleghanies (Pittsburgh), Colorado, South/Central Texas, East Tennessee, Louisiana, Alabama, Greater New York, Central New York, Western New York, the National Capitol Area, Georgia, and Minnesota. For more information contact [email protected] or the Local NKF ofﬁ ce (Afﬁ liate) in the area mentioned above. Information on "Empowerment and Advocacy" and "Understanding Depression" is available in an audio podcast at www.transplantrecipients.org TC

Transplant Chronicles, Vol. 13, No. 4 11 Transplant Chornicles ONLINE!

ALL FUTURE ISSUES WILL BE AVAILABLE ONLINE. Visit www.transplant recipients.org or return the enclosed postcard to sign up for e-mail notiﬁ cations for upcoming issues. It’s quick and easy. The online edition of Transplant Chronicles will be in a vibrant, full-color format. You can print a copy for armchair reading in black and white or color. This new format will make it easy for you to submit stories and comments.

If you don’t have a computer, the public library may have Internet access and the librarian can help you obtain a free e-mail account for the e-mail alert to be sent.

BALANCING My Life By Florence Rollwagen, liver recipient I have had many complications fol- Music and playing the piano are I always liked dog training and show- lowing my liver transplant in 1989, favorite pastimes. I tried to learn a ing. I have just signed up for a dog but thanks to good care and my own not-so-diffi cult piano piece when I obedience class for our newest dog, a stubbornness, I am delighted to be al- was waiting for my transplant, but I three-year-old, untrained 149-pound lowed to continue enjoyable activities. couldn’t because I wasn’t feeling well. male. He will need a lot of discipline I focus on what I can do and adjust my After my transplant, though I was too if he is going to fi t into my pack—I activities to ensure that I get enough weak to play the piano, I was able to already have two. I have not had to rest. For example, before my trans- master the piece I had been trying to change my routine with my dogs since plant I raised vegetables from aspara- learn on an electronic keyboard, which my transplant. gus to zucchini. Now, I just grow some was easier for me to manage. herbs and fl owers but even though I The major lesson I had to learn after grow less, it still feels great. I pay a my transplant was to be sure I got lot of attention to temperature, rain, enough rest and to balance work (I the number of growing days, etc. tend to work too much.), recreation and just enjoy gardening. and taking care of my health.

Before transplantation, I took aero- Florence Rollwagen works as a bics but I had to struggle and even- scientist in the Navy and lives with tually quit because it was too much. her husband and two—make that T Now I am taking a tai chi class. It is three—dogs. C just my speed. Florence and her two dogs

National Kidney Foundation 30 East 33rd Street New York, NY 10016 800.622.9010 www.transplantrecipients.org

✑ Has your e-mail address changed or have you recently gotten e-mail? E-mail [email protected] with your e-mail address and your membership number located above your name on the label.