Transplants & Donation

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A Mediaplanet Guide to the Power of Organ Transplantation

Transplants & Donation

Katherine Heigl The personal tragedy that made the actress an advocate for organ donation

Learn about each step of the organ donation process How countries are working together to save lives across borders

DECEMBER 2021 | FUTUREOFPERSONALHEALTH.COM

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Kidney Diplomacy Offers Hope to Patients Worldwide The Alliance for Paired Kidney Donation (APKD), a global leader in kidney donation, successfully facilitated a three-way kidney exchange between donors and patients from the United Arab Emirates and Israel that saved the lives of three women. The procedures, the first ever between Israel and the UAE, were the result of a collaboration between the APKD, the UAE Organ Donation and Transplant Committee, and the Israel Center for Transplantation. The complicated exchange involved three kidney patients, two from Israel and one from the UAE, in a “pay-it-forward” series of transplants that required six surgeries and four hospitals. Each patient had a willing, living donor whose kidney was not a match for them but did match another patient. A global solution The three-way exchange worked like this: An Abu Dhabi-based donor gave a kidney that was flown to Israel for a patient whose husband did not match her. The husband donated one of his kidneys to a patient at another hospital in Israel, and in turn that patient’s incompatible donor, her daughter, donated her kidney, which was flown across Saudi Arabia and transplanted into the original UAE donor’s mother. As a result of this “kidney diplomacy,” which crossed religious and ideological lines, three lives were saved, valuable relationships were formed, and new transplantation regulations were developed. This exchange demonstrates how we can harness our differences for mutual benefit. The APKD was created to lead innovation in the living donor kidney space. We are honored to work with transplant centers around the world, and we hope kidney transplantation can not only help save lives, but also help bridge gaps and improve dialogue between countries. Michael Rees, M.D., Ph.D., CEO, Alliance for Paired Kidney Donation

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How the Organ Donation and Transplant Community Thrived in a Pandemic As we have confronted the many challenges of COVID19, the story of the organ donation and transplant community has been a welcome bright spot. Despite the pandemic, deceased donor organ transplants have continued to rise through 2021. In fact, the United States is on pace to top 40,000 transplants in a single year for the first time, a historic milestone. Nearly 35,000 organ transplants have been performed in the United States as of mid-November, according to data from United Network for Organ Sharing (UNOS), which serves as the engine that powers the national organ donation and transplant system. This is a dramatic turn of events from where we found ourselves at the beginning of 2020. Overcoming a pandemic There was a significant drop in transplants caused by the pandemic beginning in the middle of March of 2020. However, dedicated healthcare workers across the country made adjustments, collaborated and learned, and worked tirelessly, even putting their own lives at risk. The system soon rebounded, and high numbers of transplants during the remainder of 2020 offset the pandemic-induced drop earlier

Brian Shepard, CEO, United Network for Organ Sharing (UNOS) in the year. There were 242 more donors in the first half of 2020 than in the first half of 2019. Twenty-twenty marked the 10th consecutive record-breaking year for organ donation from deceased donors and the eighth in a row for deceased donor transplants, and we are on track to make even more history at the close of 2021. Additionally, the national waitlist for all organs is at its lowest volume since 2009. We can thank dedicated transplant teams, hospitals, medical professionals, advocates, patients, donors, and their families for adapting quickly, being flexible, and working collaboratively to save lives, even during the worst pandemic in living memory. But there is more work to do. UNOS’ goal is to provide an organ for every person in need. Policy changes There are additional, ongoing efforts that will further improve the donation and transplantation landscape and result in better outcomes for patients. In early 2021, after months of

collaboration, input, and feedback, we implemented a new policy to make sure kidneys get to even more of the sickest patients, regardless of where they live. Increasing geographic equity is just one more step toward improving our already high-performing system. A report released in October revealed good news for those awaiting a kidney transplant. The numbers indicated that after nearly four months of the policy being in effect, transplants increased for all ethnicities, for different blood types, for children in need of a transplant, and for those who have spent longer times on dialysis. The report also found a 22 percent increase in kidney transplants across the nation compared to the same period before the policy change. While these results are promising, patients across the nation are counting on us to do even better. It’s for them that we unite the diverse organ donation and transplant community, and it’s why we’re committed to driving innovation. As an advocate for the more than 100,000 patients on the waiting list, we invite you to join us in saving more lives by becoming an organ donor. Please take a moment to learn about organ donation and transplantation and then register at unos.org to be an organ, eye, and tissue donor. n

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Publisher Shannon Ruggiero Managing Director Luciana Olson Lead Designer Tiffany Pryor Designer Keziah Makoundou Lead Editor Mina Fanous Copy Editor Taylor Rice Director of Content & Production Jordan Hernandez Cover Photo Courtesy of Katherine Heigl All photos are credited to Getty Images unless otherwise specified. This section was created by Mediaplanet and did not involve USA Today.

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What Happens During Organ Donation? The key to success is the choice of transplant program, but experience and commitment to the continuum of care are crucial. or the more than 100,000 people on the national transplant waiting list, an organ transplant can literally be a matter of life and death — in fact, every day 17 people die waiting for an organ. “A donated organ is often a lifelong benefit,” says John A. Goss, M.D., chief of abdominal transplantation at Baylor College of Medicine. “Someone goes from being on the verge of dying and next thing you know, you get to live 20, 30 more years — in pediatric transplantation, even longer.” The greatest gift Dr. Goss calls organ donation the “ultimate gift” and notes the psychological and emotional benefits involved. “A living donor may donate a part of an organ or one organ, and they may feel very good about that,” he says. “With a donation from someone who has suddenly died, for the grieving family it may be the only thing that they feel good about at the end.” Whether the organ being donated is from a living volunteer or a recently

deceased donor, at the top transplant programs, like The Transplant Center at Baylor St. Luke’s Medical Center in Houston, the process is rigorous. The viability of the donor’s organs is ascertained through laboratory and radiographic data as well as testing for transmittable diseases, and living donors are given psychological evaluations as well. Continuum of care Factors that should be taken into consideration when evaluating transplant programs include the size of the program and its level of experience performing transplants. “With greater experience comes the ability to take care of any complications,” Dr. Goss notes. “Look up the board certifications, see if they’ve been publishing papers.” For example, the Heart Transplant Program at Baylor St. Luke’s has a storied history that dates back more than 50 years — Dr. Denton A. Cooley performed the first successful heart transplant there in 1968. “Baylor St. Luke’s is important as a transplant center because it really provides all three of the most important missions,”

Dr. Goss explains. “Research, clinical patient care, and education. It’s like three legs of a stool: without one, it topples over. The hospital administration is devoted to making sure that we have the resources, and we do research to stay current. We have multiple members of our transplant teams that serve on United Network for Organ Sharing (UNOS) committees and American Society of Transplant Surgery committees. And we’re training the next generation of healthcare providers for transplant.” Another factor is the program’s partnerships with organ procurement organizations (OPOs). Although UNOS prioritizes organs according to disease severity and proximity to the hospital, working with local partners is crucial to a transplant program’s success. “We end up working with a number of different organ procurement organizations,” Dr. Goss explains. “But we have our local OPO, which is LifeGift here in Houston.” One of the key features of any transplant program is continuum of care. “Once you’re a transplant patient,

you’re always a transplant patient,” Dr. Goss says. “You may save a patient’s life with the transplant, but there are changes for the rest of their life. Medications, follow-up, the care of the organ, potential involvement with the donor or donor family. The continuum of care goes on forever.” Dr. Goss believes the choice of transplant center is crucial for both the donors and the organ recipients. “This is in many ways, a lifelong agreement,” he notes. “You need to have a team you really feel comfortable with, and the entire hospital has to be set up to provide all the services that you will need. Because those services are more extensive than what you’ll typically need for routine medical or surgical care.” n Jeff Somers

For more information about the transplant program at Baylor St. Luke’s Medical Center, please visit stlukeshealth.org.

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The Arkansas Children’s Hospital transplant teams love to throw a party celebrating transplant milestones. It’s therapeutic for both the family and team members to honor these achievements together. Whether it’s our expanding programs, innovation and research, successful outcomes, or healthy patients, there is much to celebrate. Arkansas Children’s Hospital provides transplant services for: • Cardiology — heart transplants • Nephrology — kidney transplants • Cancer and blood disorders — blood marrow transplants Heart Fact: The Arkansas Children’s Heart Center achieved a remarkable 100 percent surgical survival rate last year, including heart transplants. Kidney Fact: The Scientific Registry of Transplant Recipients (SRTR) reports 95 percent of Arkansas Children’s Hospital patients received a kidney within one year of entering the waiting list, with extremely high post-transplant survival rates. To contact one of the transplant services at Arkansas Children’s Hospital, call (501) 430-3142.

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The Ruby of Arkansas Children’s Hospital Shines Brighter Than Ever

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A Celebration of Life Through Transplant

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Ruby was only 18 months old when she was diagnosed with a single dysplastic kidney. This meant Ruby was born with just one kidney, and that kidney didn’t develop correctly before she was born. This diagnosis led her to Arkansas Children’s Hospital in Little Rock, Arkansas, where she and her family faced some big life changes. Ruby’s diagnosis Ruby’s birth was perfectly normal, and she met all developmental milestones until she was 15 months old. Around that time, her parents noticed she wasn’t growing, and her pediatrician suggested bloodwork. The results showed she was anemic, but there was no known cause for her anemia. Ruby was referred to Arkansas Children’s Hospital for more testing, which identified that she did not have a blood problem but a kidney problem. Ruby was in renal failure. Ruby’s mother Betsy recalls, “We knew moving forward she would need a kidney transplant, but at that point, she wasn’t old enough or big enough to receive one. So, the nephrology team made goals focused on nutrition, kidney function, and getting her healthy for a kidney transplant.” That following November, in 2017, Betsy received the call that

a kidney was available for Ruby. After many tests to ensure the kidney was a good match, Ruby underwent surgery and received her new kidney. A new chapter Now, at age six, the pediatric nephrology team at Arkansas Children’s Hospital sees Ruby every two to three months to ensure her kidney function, medications, growth, and development are normal. “Everyone loves Ruby,” says Dr. Saritha Ranabothu, pediatric nephrologist and transplant director at Arkansas Children’s Hospital. “She walks into a clinic and brings a lot of smiles. She’s able to do all the normal activities a 6-year-old can do.” After her transplant, the nephrology team gave Ruby a “kidney party” to celebrate a new start. Betsy says, “The nephrology

team at Arkansas Children’s is amazing. They’ve provided such good guidance, and I know I can always call on them when I have questions as we continue this journey. The kidney party was such a great way for the entire team to celebrate with us.” Through all of this, Betsy doesn’t forget the family that gave the ultimate gift. “Surgery day was very emotional,” she recalls. “To receive a life-saving gift from someone you don’t know is so powerful and humbling. She’s a healthy 6-yearold who loves going to school and playing with her friends because of this wonderful gift she received.” To learn more about the kidney transplant program at Arkansas Children’s, visit archildrens.org/ ruby. n Arkansas Children’s Hospital

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Katherine Heigl on the Life-Changing Power of Organ Donation In the face of loss, there can be new life. Through organ donation, it’s literally possible. Just ask actor and producer Katherine Heigl, who has firsthand experience witnessing the power that organ donation can have. When Heigl’s brother, Jason, was 15, he got into a car accident that left him with a severe brain injury despite his health being spared from the neck down. “Through this difficult and tragic experience, our whole family learned that as human beings, we need to have as much compassion for others as we have for ourselves,” Heigl, a mother of three, explains. Jason had been a registered organ donor, and Heigl and her family decided to fulfill his wishes after his death. They donated his heart, kidneys, and eyes — allowing five people to continue their lives while Jason’s ended. The “Grey’s Anatomy” and “Firefly Lane” actress shared a heartfelt post on September 30, 2021, the 35th anniversary of Jason’s death, to commemorate her brother, applaud her parents’ decision, and encourage others to follow suit and become organ donors. “They donated what they could because they not only knew it was what Jason would have wanted but because they did not want anyone else to

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suffer what they now would have to if they could prevent it. My mother always says it was not the easy thing to do, but it was the right thing to do,” she wrote. Addressing a public health crisis Not everyone on the organ donation list — a number that currently sits in the six-figure arena, and which grows by one person every nine minutes — goes on to receive a life-saving transplant. In fact, the Health Resources & Services Administration notes that 17 people die each day waiting for a transplant. “Once the person you love is no longer able to continue their life, it is good, honorable, and the right thing to do when you gift someone else, who is dying, with a second chance,” Heigl says. According to the HRSA, one organ donor can save eight lives and improve at least 75 additional lives. And yet a 2019 report on organ donation, which involved 10,000 U.S. adults, revealed that while 90 percent of adults support organ donation, only 60 percent are registered donors. Age doesn’t matter — per the HRSA, donors come from a range of ages, from under five to over 65. The website notes a 95-yearold organ donor who, after he died, saved another life.

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“All anyone needs to do to be convinced is talk to a family whose loved one is waiting for an organ to survive,” Heigl says. Encouraging an open dialogue Heigl urges people to have an open conversation about organ donation with their loved ones. “Make sure the people around you know your feelings on organ donation, so your loved ones can fulfill those wishes without any doubt,” she says. While the topic may be uncomfortable or awkward, it’s a worthwhile one to have sooner rather than later. Being prepared is crucial, as accidents aren’t predictable. “It’s so hard for people to be thinking about organ donation for the first time when they are amidst an overwhelming tragedy,” Heigl explains. “It’s something that no one ever wants to be faced with, and if you make sure that all who care about you know your own wishes, then you can spare them one more decision during an already very difficult time.” In her Instagram post, Heigl noted that “death is inevitable” and “tragedies happen.” Organ donation proves death can have tangible meaning. “None of us are in this alone,” she wrote. “At least that’s what Jason taught me.” n Melinda Carter


Can We Move Beyond Lifelong Immunosuppression?

PHOTO: COURTESY OF TALARIS THERAPEUTICS

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Solid organ transplants are lifesaving but come with the burden of lifelong immunosuppression. That may soon change thanks to innovative new research in transplantation.

early 40,000 transplants are performed each year in the United States, and the immunosuppression drugs that transplant recipients are required to take, although effective in preventing the rejection of the organ, are not without challenges. “I’m taking 23 pills a day,” says Mary Baliker, an author and healthcare professional who has been through four kidney transplants since she was diagnosed with proliferative glomerulonephritis at the age of nine. “At one point it was over 50. A lot of transplant recipients don’t want to complain about the side effects, but they’re real. And they’re serious.”

A lifetime of side effects “Transplant care usually involves drugs that must be taken to suppress the immune system to prevent rejection,” explains Suzanne T. Ildstad, M.D., founder and chief scientific officer of Talaris Therapeutics Inc., a cell therapy company based in Boston, Massachusetts and Louisville, Kentucky. “What people don’t realize is that those same drugs can impair quality of life and shorten lifespan.” These drugs can lead to numerous side effects that negatively impact the quality of life of transplant recipients, including increased susceptibility to infections, increased incidence of cancer and heart disease, and potential kidney damage. “Immunosuppressant drugs are a necessary evil,” notes Joseph R. Leven-

thal, M.D., Ph.D., Fowler McCormick Professor of Surgery at Northwestern University’s Feinberg School of Medicine. “The challenge is that because of the limitations of the drugs, patients do not enjoy as long a transplant survival as they might.” “It impacts me daily,” Baliker says. “I’ve had multiple skin cancers, and because I’ve been on medications that make me more susceptible to infection and healing, it takes longer for me to heal. Another consideration is the COVID vaccine in kidney transplant recipients. Unlike the general population, we need more than the recommended dosage. I do have antibodies after my third vaccine, but at a very minimal level. So, I still have to be very careful.”

Innovation is needed After a lifetime of living with the effects of immunosuppressant drugs, Baliker advocates for more innovative solutions. “The transplant community as a whole — we need more innovation, we need more support and better treatments,” she says. Dr. Ildstad agrees. “There really haven’t been any major breakthroughs with respect to new drugs that have fewer complications,” she says. Talaris is investigating FCR001, an innovative cell therapy, in 2 clinical trials (FREEDOM-1 and FREEDOM-2) with the goal of patients discontinuing chronic immunosuppression. “We do a combined kidney and stem cell transplant where we collect stem cells from the donor a few months before the living donor kidney transplant, and then donor cells are processed to create FCR001,” explains Dr. Leventhal. “The recipient then goes through a regimen known as ‘conditioning’ to successfully receive those stem cells.” “The stem cell in your body produces a lot of the immune cells that protect you from infection,” adds Dr. Ildstad. “When you transplant the stem cell from the donor into the recipient, it essentially re-educates the recipient to see the donor as part of themselves. This is called inducing tolerance.” For Baliker, such innovative approaches offer hope for improved quality of life. “I always say my transplant isn’t my life — transplants are a part of my life,” she says. “It’s important to promote organ donation — to explain that it works and can give quality of life to patients. But we really need more innovation because being immune-compromised affects every aspect of your life.” n Jeff Somers

To learn more about Talaris, visit Talaristx.com

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What to Know if You Need a Kidney Transplant

New Kidney. New Life.

PHOTO: COURTESY OF SPECTRUM HEALTH

With the average waiting period for a kidney transplant being three to five years, for those approaching stage three or four chronic kidney disease, it’s more important than ever to learn about treatment options and the possibility of kidney transplantation.

When considering kidney transplantation, patients should ask their care team for more information and request to be sent to a transplant center. Before selecting a transplant center, patients should check with their insurance companies to see which centers are on their approved list. The location of the transplant center is also important to consider, as patients will need to attend all appointments and be able to easily travel if a kidney becomes available. Patients can visit helpful websites like www.optn. transplant.hrsa.gov and www.srtr.org to find approved center locations. Knowledge is power Kidney patients must remember that they are not alone through this process. A patient’s transplant team can answer key questions about transplant evaluations, getting onto the transplant list, what finding a “good match” means for the patient, and what to expect in recovery after transplantation.

Article continues on page 10

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After waiting his whole life, 5-year-old Jazir Westerfield received a life-saving kidney. Cartoon characters dance across the TV screen as Jazir sleeps on the living room couch. He has been up most of the day delighting in his new stamina, climbing on furniture and frolicking in frenzy. This is a new world for Jazir, who received a donated kidney at Spectrum Health Helen DeVos Children’s Hospital on June 13, 2016, a lucky day for this little boy who has battled kidney failure and been on dialysis all of his young life. He still has to take daily medications, but gone are the days of daily dialysis treatments and constant fear over whether a kidney would ever come. “We got the call at about 3 a.m.,” Jazir’s mom, Tammy, says. “I thought, ‘Who is calling me at three in the morning? That is so rude.’ I don’t even remember the actual conversation. All I heard

was, ‘Do you accept the kidney?’ I was in tears.” They arrived at the children’s hospital about half an hour later. “They did a complete workup, and he was in surgery by 1 o’clock,” Tammy recalls. “It was crazy. It’s the best thing that could have happened to us.” A young fighter Born on January 28, 2011, Jazir spent the first four months of his life in the Helen DeVos Children’s Hospital neonatal intensive care unit. He suffered from posterior urethral valve disorder, a membrane obstruction in his urethra that affects about 1 in 8,000 babies. Because he couldn’t urinate while growing in his mother’s uterus, his kidneys became severely damaged. Doctors removed the first kidney when Jazir turned two years old and the second kidney when he was four. Yi Cai, M.D., Jazir’s pediatric nephrologist, says Jazir had a prolonged wait for a kidney match

because of his blood type. But it was worth the wait. “Already we see he is getting great energy, eating, and playing well,” Dr. Cai says. “His story is a great example of teamwork.” A childhood saved Jazir received the kidney of a 42-year-old male who was taken off life support. Although the surgery had to be extended to fit the kidney into the 5-year-old’s body, “it’s working well,” says Tammy. “It’s doing what it’s supposed to do.” The new kidney makes Jazir act more like other boys his age. He’s active, has a lot of energy, and has a big appetite. “He climbs on everything now,” Tammy says. “Even though it’s hard for him to get back down, he climbs. He’s being the actual boy that he was born to be.” A version of this story originally appeared on www.healthbeat. spectrumhealth.org on April 1, 2017. n Marie Havenga

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Continued from page 8 When it comes to kidney transplantation, and every aspect of kidney disease, patients need to advocate for themselves. That begins by asking the right questions and utilizing patient-designed tools to navigate the process. For more information about what to ask your transplant team, types of transplants, next steps at a transplant center, the transplant experience, and more, visit www.aakp.org.

What is AAKP? Founded in 1969, the American Association of Kidney Patients (AAKP) is the nation’s largest independent kidney patient organization with the largest membership of kidney transplant patients and donor families. AAKP advocates for patient care choice, equitable access to transplants, and defines high-quality disease treatment as the availability of medical options that fully align with patient aspirations. AAKP is led by patients, many of whom are transplant patients. The organization is very involved in federal and private sector research and innovation designed to move America beyond outdated, high mortality dialysis. These efforts will lead to more life-saving care options including artificial wearable and implantable organs, xenotransplants, and regenerative medicine. Visit aakp.org, facebook. com/kidneypatient, and twitter.com/ KidneyPatients for more information. Jennifer Rate, Marketing and Communications Manager, the American Association of Kidney Patients; Paul T. Conway, Chair of Policy and Global Affairs, the American Association of Kidney Patients

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The Complex Road to an Organ Transplant

With more than 100,000 people in the United States waiting for an organ, do you ever wonder how a patient receives an organ transplant? Meet Nia. Nia works at an organ procurement organization (OPO), 1 of 57 nonprofit, federally designated entities responsible for facilitating the organ donation process across the country. Nia is a donation coordinator and a steward of the gift of life. Late one night, while Nia is on call, she receives a notification from a local hospital that a patient was admitted who had suffered a severe head injury. After all lifesaving efforts had been attempted, the person was put on a ventilator. Nia goes to the hospital immediately to speak with the medical

team and evaluate the patient. After clinical testing, Nia and the patient’s physicians determine that the patient is brain dead and is medically eligible for organ, eye, and tissue donation. The donation process Before she proceeds, Nia checks the national organ donor registry and verifies that the patient is listed as a registered organ donor. She then works with the OPO’s donor family services team to speak with the family about next steps to honor their loved one’s decision to become an organ donor. Nia and her team will continue to provide support to the grieving family throughout the entire donation process, even after donation takes place. To find a recipient match, Nia enters the donor’s blood

type, height, weight, and other medical data into the national transplant waitlist system to begin the organ matching process. A list of the best recipient matches appears based on medical urgency, time on the waiting list, and geographic location. Nia sends organ offers to the transplant surgeons with the top recipient candidates, and once a transplant program accepts the donation opportunity, the surgical team and OPO staff work together to recover the organ(s) and tissue for donation. Nia ensures the organs are safely packaged and oversees their transport to the hospital where the transplant will take place. A priceless gift Donation occurs, and the organs are transplanted into the recipient or recipients, giving them a second chance at life. One donor can save up to eight lives through organ donation and heal up to 75 more people through tissue donation. Dedicated OPO workers, such as Nia, make life happen 24 hours a day, 365 days a year. They are the vital link between donors and recipients and work tirelessly with hospitals and transplant centers to ensure every donation opportunity results in lives saved. Last year alone, deceased organ donation saved more than 33,000 lives in the United States. That’s thousands of lives impacted by the gift of donation and world-leading rates of transplantation. You can do your part by registering as an organ donor at registerme.org/AOPO50K and sharing your decision with your loved ones. To learn more about the caring work of OPOs, go to www.aopo.org. n Steve Miller, CEO, Association of Organ Procurement Organizations (AOPO)

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Thanks for the masterpieces. When parents say they’re thankful for everything, they mean everything – our incredible care team, eight nationally ranked specialties and the Charlotte region’s only BEST Children’s Hospital. But most of all, they’re thankful that we give kids the chance to just be kids. Learn more at LevineChildrens.org/Best.


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Every day at Arkansas Children’s Heart Center, we strive for excellence, and our outcomes prove it. Under the direction of nationally renowned pediatric cardiothoracic surgeon Dr. Brian Reemtsen, the Heart Center achieved a remarkable 100% surgical survival rate last year, including transplants.

For more outcomes visit archildrens.org/cardiologyoutcomes

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Pediatric Cardiothoracic Surgeon and Director of the Heart Center

First transplant in 1990, representing over 30 years of heart transplants • Youngest transplant at 8 days old • Oldest transplant at 59 years old • Average 11 transplants annually, performing as many as 31 in one year • Currently following 89 post-transplant patients Recognized as a PHTS Vanguard Center Award for our outstanding contribution to the Pediatric Heart Transplant Society Registry

Ak 1 Children’s Way, Little Rock, AR 72202 501-365-8195 | www.archildrens.org/HeartTransplant @ 2021 Arkansas Children’s - Heart Center


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