FEATURE ‌ Second Life 

How organ donation saves lives every day in S.C.

Mt. Pleasant resident Brad Richardson was asleep in the dialysis chair on July 6, 2005, when the chief nurse at the dialysis center came in, woke him up, and said, "You're going to get a call from transplant tonight ... you will be a candidate, and don't be surprised to hear from them between 10 and 12."

"I was in the tub when they called and told me to be down there at midnight," Richardson says. "There" was the Medical University of South Carolina (MUSC) Transplant Center, the only comprehensive transplant center in the state and the place where those on the state's transplant waiting list immediately head if and when they get "the call."

Richardson, who has adult-onset diabetes and lost his sight in 2004, had been on the waiting list for a kidney for about a year and a half. During that time he'd spent roughly 18 hours each week hooked up to a dialysis machine.

click to enlarge Rozell Wright-Joyner , mother of a donor, helps spread the word to the African-American population, which makes up 70 percent of the waiting list for kidneys in the state - LESLIE MCKELLAR
  • Leslie McKellar
  • Rozell Wright-Joyner , mother of a donor, helps spread the word to the African-American population, which makes up 70 percent of the waiting list for kidneys in the state

"They told me that the average wait was about two years," Richardson says. "I didn't want to know where I was on the list because people would ask me about it, so I just prayed that I would obtain a kidney one day."

He was nervous as his wife, Suzanne, drove him toward MUSC in the middle of the night. "When you're called down there," Richardson says, "you're one of several contacted to come down, and if the best candidate [for the organ] has an irregular EKG or chest film that would compromise assimilating the organs, another candidate would step into first place."

His worries were assuaged after five and a half hours of tests and bloodwork on both Richardson and the donated kidney, when the doctors rolled him into the operating room at 6 a.m. on July 7, 2005. When he emerged later that morning, he had a functioning kidney and a new lease on life.

The operation that changed Richardson's life on that summer morning, like each transplant operation that takes place in S.C., was the result of the efforts of dozens of people across the state, starting with David Cato, the 23-year-old organ donor who died suddenly in Greer on July 5, providing Richardson with his new kidney.

When someone passes away unexpectedly and the circumstances align correctly, what often begins as a tragedy turns into something positive through the "gift of life" — organ donation. Unfortunately, the demand constantly outweighs the supply when it comes to transplants, with an average of 18 people dying every day in the U.S. as they're waiting for a new organ. As of April 4, there are 631 people on the S.C. organ transplant waiting list.

click to enlarge Lifepoint employee Catherine Dixon passes out free bandage dispensers and jar grippers at a recent Stingrays game to help bring awareness to Donate Life Month - LESLIE MCKELLAR
  • Leslie McKellar
  • Lifepoint employee Catherine Dixon passes out free bandage dispensers and jar grippers at a recent Stingrays game to help bring awareness to Donate Life Month

"People don't like to think about death," says Nancy Kay, the founder, president, and CEO of LifePoint, Inc., the charitable organization that serves as S.C.'s federally-designated Organ Procurement Organization (OPO) for organ recovery services (excepting Aiken and Edgefield counties). "Our society goes all out to preserve life, and in our society death is a failure to medical professionals. Transplantation in itself is a medical intervention to defy death — everyone fights death. But no matter what, there has never been a person who's defied death in the end.

"I think what we have to do as a society and as individuals is determine and make the decision about what do we want to occur at our death," Kay continues. "What do you want to have happen to your body? All these end-of-life decisions that people can make it much easier on their surviving family if they know what the person's wishes are after death."

click to enlarge Mascot Sam Clemons works as a clinical services liaison at Lifepoint, helping ensure that people's end-of-life wishes to be donors are fulfilled - LESLIE MCKELLAR
  • Leslie McKellar
  • Mascot Sam Clemons works as a clinical services liaison at Lifepoint, helping ensure that people's end-of-life wishes to be donors are fulfilled

One major problem that seems to keep many potential donors from signing up to donate is the widespread misinformation that can permeate an entire community.

Donate Life South Carolina (formerly the Gift of Life Trust Fund), a not-for-profit group that promotes organ and tissue donation throughout the state, notes on their website that approximately 90 percent of people on the state waiting list are hoping for a kidney, and that 70 percent of those awaiting kidneys are African-American. While it may seem like an arbitrary point to make, both Donate Life SC and LifePoint have found that while a large number of people believe one or more of the many myths associated with organ donation (see sidebar to the left), the African-American community in particular seems to show a strong hesitance to sign up to donate.

"Because I am a minority, I know that they're lacking so much information, and I thought that maybe hearing from a person of color, they would be a little bit more accepting," says Rozell Wright-Joyner, a donor mom, Cross resident, and volunteer with Donate Life SC. "I find that they're less informed and that's why I try to make a point of speaking whenever I can, wherever I can, just to try to get rid of some of the myths or the misconceptions that people have."

After the first successful kidney transplant was performed in Boston in 1954, the national organ donation system was a network of disconnected regional facilities and OPOs that has evolved slowly into what we have today. In the mid-1980s, the federal government passed a number of important guidelines and laws to facilitate transplants across the country, including the National Organ Transplant Act, which established the framework for a national system and computer registry operated by the nonprofit United Network for Organ Sharing. The Act also prohibited the buying or selling of organs in the U.S. and required hospitals to develop policies for approaching families about organ donation.

Nancy Kay became interested in starting a statewide organ donation organization when she was a nurse at MUSC in the late '70s and became involved by chance when one of the kidney transplant surgeons wanted her to help out with transplant research. The project led to her and one other person overseeing all of MUSC's transplants — then limited to kidneys.

"Part of my responsibility was to go to the dialysis units throughout S.C. and educate patients about kidney transplantation, to try to get more people to sign up to get a kidney transplant," Kay says. "As our waiting list started to grow and grow, we thought, 'Wait a minute, we've got to do something to improve our organ donor system so we can get more kidneys,' which was when we started looking at ways to increase organ donation."

LifePoint, originally known as the South Carolina Organ Procurement Agency, was established in 1984 with the stated mission to advance organ, eye, and tissue donation in S.C. for transplantation and research through professional and public education, as well as educational and emotional support for families of donors and potential donors.

What began as a two-person operation at MUSC has grown into a 121-employee nonprofit with offices in Charleston, Columbia, and Greenville. In 2001, LifePoint broke down the responsibilities into education, consent, donor management and organ placement, organ recovery in the operating room, and aftercare.

The donation process is both comprehensive and efficient. At over 60 hospitals statewide, when someone has sustained a traumatic brain injury and meets specified clinical criteria, the hospital is required by law to contact LifePoint, which then sends a Family Support Counselor to provide emotional support to the family of the injured person and to discuss end-of-life options with them (See a detailed walk-through of the process at www.lifepoint-sc.org.)

"We're there to educate them and let them know their options," says Carene Montjoy, a Family Support Counselor with LifePoint. "We go through extensive training on brain injuries. A lot of times families don't understand medical terms, so we're there to explain things to them in a language they understand — it's not a question, we just inform them and let them know their options, make sure they have all the information that they need to know."

Montjoy has seen firsthand how families can find it very healing to know that their loved one went on to save someone else's life — in fact, organ donors can save multiple lives. What many families and potential organ donors don't realize is how important it is to let your loved ones know what you'd like to happen to your body after death. Although it may not be the most appealing dinner-table topic, the comfort of definitive answers to the tough questions that arise when a loved one dies unexpectedly more than outweighs the initial reminder of mortality.

"I had a pediatric case once, a child who was very young — around six — who had passed away," Montjoy says. "Even someone that young, he had seen something on TV about organ donation and he talked to his parents about it, he told them that he had wanted to be an organ donor. When we approached the family, they said, 'Oh my gosh, he just talked to us about that the other week,' and they found so much comfort in knowing that they were able to honor his wishes.

"The fact that this young child had thought of something that most adults don't even think about is just amazing," Montjoy continues. "The family felt like they knew that this was God's plan, because they were able to hear that from their son so soon before the tragedy happened. That's what keeps us [family support counselors] going; knowing that we're helping not only the recipients, but also the families who are going through this ... families can find comfort — it's something good that's come out of something bad."

click to enlarge Chi Chi Setzer and her son's donor recipient Brad Richardson both speak on behalf of Lifepoint
  • Chi Chi Setzer and her son's donor recipient Brad Richardson both speak on behalf of Lifepoint

When David Cato died, his mother, Chi Chi Setzer, knew that he had wanted to donate his organs because he indicated it on his license. However, she knew next to nothing about the process. Today, she is a speaker for LifePoint and its sister organization, Donate Life SC.

"Before my son died, I was just very illiterate about organ donation," Setzer says. "Now that I've experienced it, I know how much the public really needs to learn. A lot of people are not familiar with how the process goes. They think that just because you want to be a donor you can, but it's actually up to the family to abide by your wishes. That's why I do this (volunteer) — just to make the public aware of the good that can come out of the death of a loved one."

The changes to the lives of recipients are immeasurable — people who were basically the walking dead are reborn into newer, more grateful versions of their pre-illness selves. Nowhere is this more readily apparent than at the biennial U.S. Transplant Games, a four-day athletic competition for transplant recipients whose organ has been functioning for at least six months. The Games are not only a sporting event, they also offer a chance for recipients, donor families, and their families and friends to congregate for camaraderie and celebration.

click to enlarge Chi Chi wears a picture of her son David Cato in a pin near her heart - LESLIE MCKELLAR
  • Leslie McKellar
  • Chi Chi wears a picture of her son David Cato in a pin near her heart

"I went to the 2005 Transplant Games in Louisville, Ky., and that was just a life-changing experience," Setzer says. "To look around you and see literally thousands and thousands of people who wouldn't be here today unless they had a donor. I couldn't believe it ... when we in the donor families were walking up to be seated, people were actually just reaching out and crying and touching us, just saying thank you. They'd never gotten to meet their donors, and a lot of them looked so hard for them, just to say thank you ... it was really touching."

click to enlarge David Cato, organ donor
  • David Cato, organ donor

Another unexpected joy that came out of Setzer's visit to the Transplant Games was her heightened desire to get in touch with those people whom David's organs had gone to. On the anniversary of her son's death, she sat down and wrote letters to all of his organ recipients. Little did she know that at the same time, Brad Richardson was trying to get in touch with her, too.

"I tried to write a letter time and time again," Richardson says. "I started that letter about a million times. But how do you write a letter to somebody whose name you don't know, knowing that something had happened to their loved one but not knowing the gender, age, race, or anything, when it's such an incredibly precious gift that that person had given to you? 'Dear blank, thanks for the kidney'? It's the hardest letter I'd ever written."

Richardson's letter ended up getting lost in the mail, but when he got Setzer's letter, he contacted LifePoint and Donate Life SC, who act as intermediaries between donor families and recipients. That same night, he got a phone call from Setzer and they ended up talking for over two hours — then they talked for two hours the next night, and the next, and for two weeks after that.

"Nothing in this world could've brought my son back to me, I mean nothing, but now part of him is still living here on Earth. David's gift actually gave life to, as far as I know, five different people. I have gotten a letter from the lady that has his heart — she's a 57-year-old grandmother — and I've also gotten a letter from his other kidney recipient, but I've actually had the opportunity to meet Brad. He actually calls my son 'the best friend he never met' ... the first time I met him it was kind of bittersweet, but you could just tell the love he and his family had for David, not ever even knowing him, and it was just an unbelievable meeting."

Today, Chi Chi and Brad unite for speaking engagements for both LifePoint and Donate Life SC, and both of them will be at the annual 5K Run this Saturday at Wannamaker Park.

"It does me good to talk about it, to be involved," Setzer says, "because it's like my son gave a wonderful gift and it's like part of him is still here. It's kind of like a circle of life, and life goes on, and from him, now Brad is living. That's what heals my heart in some aspect, that part of him is here with me. I could sit around and cry all day every day and do nothing, or I could do something good, make something good come out of something so tragic. That's why I do it, I do it in honor of my son."

For a printable donor card, please click here.

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