Transplants: The Gift of Life

DECEMBER 2018 | FUTUREOFPERSONALHEALTH.COM

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Transplants: The Gift of Life

DISCOVER why the transplant community needs to protect the rights of organ donors LEARN about the role transplant coordinators play during the organ donation process

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Amy Purdy, snowboarder and Paralympian, shares how she found her passion again after a kidney transplant

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Transplant Coordinators Are Essential for Saving Lives Coordinators exist at the very heart of the robust and complex field of organ transplantation. They put all the pieces of transplantation together when they collaborate with transplant surgeons, immunology specialists, attending and consulting physicians, nurses, hospital leaders, chaplains, social workers and other members of the health care team.

An unsung hero Without a coordinator, transplantation could not exist for the thousands who need a new organ for a second chance at life. The role of the coordinator can be overlooked when reading historical accounts of transplantation, which typically feature milestones in surgical and immunological accomplishments.

The role of coordinators Procurement coordinators meet with the family of the potential donor to obtain permission for donation. If permission is granted, the coordinator will work tirelessly to schedule serologies and deliver the organs to the immunology laboratory, schedule the organ removal, assist in the surgery and ultimately flush and cool the organs. The coordinator then either places the organ on a portable-perfusion pump or packages them for transport to another destination.

Clinical-transplant coordinators are called on to manage the complicated care of the transplant recipient, both in preparation for and after surgery. They provide the majority of education to patients and monitor patients for signs and symptoms of rejection and infection.

Donna Dickt, Executive Director, NATCO

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How the Transplant Community Can Protect Its Donors There are now almost 115,000 people waiting for an organ transplant.

On average, 20 people die every day during this waiting period.

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early 35,000 people received an organ transplant in 2017, but advocating for donor registration is just the beginning.

Protecting donors Living donation is the optimal way for a transplant candidate to receive a kidney. The Living Donor Protection Act aims to protect those who donate an organ by eliminating potential disincentives — such as insurance coverage — and by offering job protection to living donors.

Living donors are required to go through a thorough medical examination to ensure they are healthy enough to donate. Despite their proven health, living donors sometimes experience increased costs for health- and life-insurance coverages.

The Living Donor Protection Act addresses this and provides job protection under the Family and Medical Leave Act.

dialysis center which creates a financial disincentive for dialysis centers to refer patients to transplantation.

This legislation could remove patient choice and access to transplantation, even when transplantation is the best option for the patient and is less expensive over time than dialysis for insurance providers.

Dianne B. McKay, M.D., President, American Society of Transplantation

One of the most important issues that could impact those with kidney disease is the Dialysis PATIENTS Demonstration Act. If enacted, this bill would give large dialysis organizations complete control to be the central point-of-care for those with end-stage kidney failure. This would allow patients to access all their physicians and resources through the

Why we advocate The transplant community remains committed to advocating for issues that impact those touched by transplantation. In October 2018, the American Society of Transplantation brought several kidney-transplant recipients to Capitol Hill to educate key legislators about the true impact of these bills.

The transplant community is focused on preserving patient choice and access to transplantation and eliminating disincentives for living organ donors. n

Publisher Lindsay Waldman Business Developer Mac Harris Managing Director Luciana Olson Designers Chris Espino, Tiffany Pryor, Keziah Makoundou Copy Editor Lauren Hogan Director of Sales Shannon Ruggiero Director of Business Development Jourdan Snyder Director of Product Faye Godfrey Lead Editor Mina Fanous Production Manager Josh Rosman Production & Social Media Coordinator Bria Mastroianni Cover Photo Julianne O’Neill All photos are credited to Getty Images unless otherwise credited. This section was created by Mediaplanet and did not involve USA Today.

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Surviving a Double-Organ Transplant

When I was diagnosed with advanced kidney disease at age 29, it came as a shock. Otherwise healthy and athletic, I had gone to the emergency room experiencing a fever and back pain.

I was told that within a few years, I would need to start dialysis unless I could find a donor for a kidney transplant.

Gar y, my younger brother, was both a close-enough match and healthy enough to donate, and in November 1982 we underwent transplant surgery.

Three times in the first five years, my body began rejecting the transplant. But I was fortunate — 36 years later, Gary’s kidney is perfectly at home in my body, filtering my blood and keeping me healthy.

Gary’s selfless gift has now given me 36 additional years of life and allowed me to experience the births of my two children and all the milestones in their lives, including walking my daughter down the aisle at her wedding this October. Neither of us could have known that his kidney would keep going for this long — one of the longest-lasting successful transplants in the country.

Today, Gary is healthy as ever and still practicing chiropractic medicine. And I’ve had a full and rewarding career, including my current service as chair on the board for the American Kidney Fund, a nonprofit that fights kidney disease on every front and has helped nearly 1,000 dialysis patients get transplants this year.

I can never repay Gary for his priceless gift, but every single day, I am thankful that he made the decision to give me life.

Robert M. Tarola, C.P.A., C.G.M.A., Chair, American Kidney Fund

PHOTO: DANIEL WALLACE

A Brother’s Enduring Gift of Life

transferred to in Florida, doctors knew Cajuste’s chances of survival were slim.

“Her risk was huge,” says Dr. Peter Berman, a transplant cardiologist at the hospital. “We’re talking a highrisk patient, even by our standards — and we only see high-risk patients.

She was a level above that.”

On January 20, 2015, Cajuste got the call that changed her life — there were organs waiting for her. Soon she was in surgery again, getting her new heart. Then, back into surgery to get her new kidney.

Tonya Cajuste suffered from an aortic dissection while she was already waiting for a kidney transplant. Despite the odds, she survived after a double-organ transplant.

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onya Cajuste and her husband J.C. were getting ready for church one Sunday in November 2013 when she decided to have a peanut butter-and-jelly sandwich for breakfast. She soon started feeling unwell, as if the sandwich were stuck in her chest.

When she stood up, J.C. saw her face turn gray, and he immediately said, “Babe, I think we need to get you to the hospital.” Neither of them knew that Cajuste’s aorta — the largest artery in the body — was tearing apart; or that she would ultimately need a double-organ transplant in order to survive.

A grim diagnosis Cajuste was rushed into surgery at a Palm Beach hospital. Doctors there told her husband that she had about a 10 percent chance of surviving the aortic dissection. Before the dissection, she had been living with kidney disease and had to have regular dialysis. She was already waiting for a kidney transplant.

Cajuste made it through surgery, but the ordeal had damaged her heart. She would need a heart transplant as well as a new kidney, the Palm Beach doctors told her.

At Tampa General Hospital, where patients with complex illnesses are

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Transplant patients Robert and Annabelle Villarreal

A new life After the surgery, Cajuste faced rehabilitation and some health setbacks, but today, while she still faces a somewhat higher risk of another aorta problem, she is healthy, happy and has been able to return to work.

Cajuste feels blessed to have more time with her husband. She figures that now she’ll get to see her son marry and have children.

She also remains keenly aware that she is alive today because another family lost a loved one. That family has described her donor as a “sweet, kind, giving person.”

“I want to carry on that legacy, too,” Cajuste says. “That person who gifted me with this � their family doesn’t get the benefit of seeing them, or hearing their laughter or knowing they are touching lives. So for me, it’s important to carry on a life-changing, helping-people kind of legacy. I know a lot of people don’t get to see the before and after,” she says. “This is definitely the after.

Transplantation extends life. And it makes lives better.” n Lisa Greene, Public Relations Manager, Tampa General Hospital

TONYA’S CONDITION WAS CRITICAL.

SO WAS HER CHOICE OF HOSPITAL. Tonya Cajuste needed a new heart. And kidney.

After emergency surgery at her local Palm Beach hospital, doctors knew she needed a double transplant to save her life. But no hospital would take her. Except TGH. As one of the busiest and best transplant centers in the nation, TGH has performed over 10,000 transplants—with shorter wait times and world-class outcomes. Like Tonya’s.

Read Tonya’s story at TGH.org/transplant

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Met the Person Whose Life She Saved Burcu Mirza saved a man’s life after donating her bone marrow in 2013, and then continued to advocate for transplants at the 2018 New York City Marathon.

Burcu Mirza’s decision to run the 2018 New York City marathon was about more than proving something to herself — it was a way she could share her life-changing experience with the world and dispel the misconceptions that surround bone-marrow donation. After registering as a potential donor in 2011, she was found to be a match and donated her marrow in 2013.

Since then, Mirza has been dismayed to learn that many people do not register simply out of misplaced fear.

“Many people are scared that they will lose their health if they donate,” Mirza explains. “As a donor, if I can run my first marathon at age 42, I will be able to show that bone marrow donors do not necessarily lose their health or strength.”

Little did she know, her generosity and persistent advocacy had inspired DKMS, the organization she donated through and was now running to raise funds in support of. They had prepared their own surprise for Mirza. Cliff Sherrill, her recipient who she had been speaking with for four years despite not being able to physically meet, was waiting for her at the finish line.

With DKMS’s help, Sherrill and his family were flown into NYC days before the marathon for the big surprise.

Sherill stared at the finish line and wondered aloud, “What can you say to the person who saved your life?” Moments later he discovered that sometimes the warmth of a hug and a few tears can sometimes say more than words themselves.

James Kirkland, Content Strategist, DKMS

How Amy Purdy Found a Path to Success, Despite Setbacks

PHOTO: JULIANNE O’NEILL

How One Woman Finally

Snowboarder Amy Purdy had her life planned out until a bout with bacterial meningitis took her legs, kidneys and spleen, almost costing her her life.

Paralympian and “Dancing with the Stars” contestant Amy Purdy found her passion at the age of 15. “I remember seeing a bunch of snowboarders having so much fun, and telling my dad I want to try snowboarding,” Purdy recalls.

Her love for the sport led her to pursue a massage-therapy career to have the flexibility to snowboard off-hours.

Sudden changes “One day I started to feel a little bit sick,” she says. “Within 24 hours, I was in the hospital, on life support and given a 2 percent chance to live.” Purdy had been struck by Neisseria meningitidis, a type of bacteria that causes meningitis. She lost her spleen, the hearing in her left

ear, kidney function and both of her legs due to septic shock.

What pulled her through was snowboarding. “I was so passionate about it that I was determined to learn to snowboard with prosthetic legs.”

There was no equipment for amputees to use for snowboarding. Purdy pushed to create her own. “I think the passion for snowboarding and the challenge of figuring it out have been my biggest motivators,” she says.

During this time, Purdy received a kidney transplant from her father. She was nervous, but the operation went smoothly. “Three months later I won a bronze medal in a snowboard competition,” she says. “I was ready to get back to living my life.”

Inspiring others She definitely has. In 2005, Purdy and her husband Daniel Gale founded Adaptive Action Sports (AAS) to create outdoor adventure opportunities for people with physical disabilities and wounded veterans. “When I’m not snowboarding, traveling and speaking, I’m working on AAS so others can follow their passions as well,” she says. “Our circumstances don’t determine who we are and what kind of life we will lead � our choices and our passion for life are what determine the quality of life we live.” n Liane Bonin Starr

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Cell Transplants Provide New Hope for Treating Diseases Cell transplants are essential to treating pancreatitis and other diseases. Magnolia Long is one patient whose life was changed after undergoing a cell transplant.

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or the first time in more than two years, 20-year-old Magnolia Long is craving food. It’s a huge milestone for the college student who, up until this February, had no appetite due to nausea and severe abdominal pain caused by pancreatic cystosis, a rare complication of cystic fibrosis.

“I always had this constant, dull pain in my stomach growing up,” Long recalls. “I went to the doctor, but we never got a diagnosis. I was used to it. But one day when I was a senior in high school, it got so bad that I just had to lie down and put ice packs on my stomach.”

PHOTO: UNC HEALTH CARE

Receiving the diagnosis That was in July 2015, and Long’s pain was so severe that her mother took her to the emergency room. On a subsequent hospital visit, Long learned she had one of the worst cases of pancreatic cystosis with recurrent pancreatitis her doctors had ever seen.

In addition to the pain, the cysts in Long’s pancreas weren’t allowing it to function correctly, leading to nausea and vomiting that caused the young woman to lose weight. She learned there were few treatment options available to ease her suffering, and none of them were permanent.

A new frontier During this time, Long met Dr. Chirag S. Desai, who was starting a new transplant program at UNC Medical Center in Chapel Hill, the only one of its kind in North Carolina. Long was a good candidate for the surgery because she was suffering from poor quality of life and required repeated hospitalizations. Despite her condition, her blood-sugar control was near normal, indicating she would respond well to the procedure.

In February 2018, she became the second patient of UNC’s chronic pancreatitis and autologous islet-cell transplant program.

During the surgery, Dr. Desai removed Long’s pancreas, salvaged islet cells that secrete insulin and other critical hormones and infused those cells into her liver where they could function normally.

Unlike most treatments for chronic and recurrent pancreatitis, this surgery provides permanent pain relief while also preventing patients from developing brittle diabetes — a severe form of insulin-dependent diabetes that is difficult to control.

“After receiving this surgery, patients have a significant improvement in their quality of life, along with a reduction in the negative effects of diabetes,” Dr. Desai says.

Long’s relief was so immediate that within three weeks of the surgery, she was back at school. She no longer depends on insulin and is back to her normal medication routine for cystic fibrosis. The procedure dramatically improved her quality of life and redefined her outlook on the future.

“I’m not in pain anymore and it’s wonderful.

Dr. Desai was great through the whole process. I know he genuinely cares about my well-being and did everything he could to get me feeling better,” Long says.

At UNC Medical Center, physicians are providing health care solutions that exist at few other places.

UNC is one of only a handful of institutions across the United States that offers islet-cell transplantation for patients suffering from pancreatitis.

“To have this cell transplant initiative here in North Carolina offers a new hope to people suffering from pancreatitis,” says Dr. Desai. “It also lays the groundwork for cell transplant therapy for a variety of diseases in the future.” n Carleigh Gabryel, Communication Specialist, UNC Health Care

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LIFE CHANGER. DREAM MAKER. Always on the cutting edge of medicine, UNC Medical Center in Chapel Hill is one of the few places in the country offering a Chronic Pancreatitis and Autologous Islet Cell Transplant Program. This innovative program dramatically changes the lives of those living with pancreatic issues that are severely limiting and sometimes life-threatening.

Of all the treatment options available to you for pancreatic disorders, discover the revolutionary ones where the future of health care has already begun.

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