Good Samaritan critical link in living donor chainTweet
By Dawn Brazell
With orange earrings dangling beneath perfectly coiffed hair, Amber Cue shows no sign of her recent kidney transplant except that she sits by her hospital bed at MUSC.
“She is the heart of the family,” her mother said, beaming, describing her 17-year-old daughter’s sweet, compassionate nature and how happy the family is that she was finally able to get a life-saving kidney transplant.
That she is the heart of the family is fitting, given how the story of her transplant all started. (See her story in the Sept. 20 issue of The Catalyst or on MUSC News Center.)
|Dr. Michael Denson donated a kidney April 3 to start a living donor chain, the first for MUSC that resulted in a payback kidney for a pediatric patient at The Children’s Hospital of South Carolina. Photo provided by Brennan Wesley, Business Development & Marketing Services|
The person who set events in motion for Cue to get her kidney was Michael Denson, Ph.D., director of Marine Resources Research Institute with the S.C. Department of Natural Resources, who decided one day he’d like to donate a kidney. His altruistic action set in motion a six-person, living organ donor chain – the first one at MUSC – that would end up with a payback kidney coming to this teen from Cheraw, who for the first time in a long time can live without the constraints of dialysis.
Sara Parker, R.N., Living Donor Transplant coordinator at MUSC, said Denson was the perfect first candidate for the program. “What makes Mike special is his heart is made of gold. He’s a wonderful person. He’s incredibly intelligent, educated, cares about people, and he wanted to do the most good for the most amount of people that he could,” she said.
Denson, who wanted his donation to help a child, was glad to hear how well the transplant went of his kidney to a young Cleveland woman, whose numbers showing her kidney functioning dropped in half to a healthier level overnight after his donation. He especially was thrilled to hear how he helped a child. “I’m over the moon about it. That’s the best possible ending,” he said.
Surprised that more people don’t know about the living donor program, Denson found out about it from a friend who had done it. He began researching it and ended up looking into MUSC’s program.
“I learned it was something realistic that you could do and maintain a healthy and happy life afterward,” he said.
Initially he wanted to donate to a child, then he learned about the National Kidney Registry’s program for kidney chain donation. “It seemed to be an interesting program because you wouldn’t just donate your kidney to one person, but several people would get kidneys down the line, which became more of an interest to me. I thought I would get more bang from the buck.”
That’s the thinking of Garet Hil, founder of the National Kidney Registry that facilitates living donor transplants. Hil became involved in kidney-related health care when his daughter was diagnosed with kidney failure at age 10, but he and his wife were not eligible to be donors. Though they eventually found a suitable relative, the experience led him to found the registry in 2007. The registry uses sophisticated algorithms to arrange the best possible matches between donors and recipients.
Good Samaritan donations, as they are being called, initiate a chain that can pair better-matched donors and recipients. One of the tests performed before a transplant is HLA typing, also called tissue typing.
This test identifies certain proteins in the blood called antigens. Although there are many different antigens, there are six that have been identified as having an important role in transplantation, with the goal to have as high a match as possible to decrease the chances of rejection and the need for immunosuppressant drugs.
According to the registry’s website, it has facilitated two, six-antigen match transplants (about 1 percent of transplants) using chain matching – a hard-to-match feat.
As word gets out about advantages of donor chains and the registry pool size increases, the number of six-antigen matches should increase. Living donor exchanges with a six-antigen match are likelier to benefit from decreased immunosuppression.
Many Good Samaritan donors choose to start donor chains because it is a way to help more than one person suffering from kidney failure. Chains can be short or long, in some cases involving “clusters” that link up to form long chains as was the case in 2012 with a 60-person, 30-transplant chain.
In Denson’s case there was a 12-person, six-transplant chain. It started with six people going into surgery at the same time April 3 and 4, three donors and their respective recipients. His kidney, packed in ice and complete with its GPS tracker, flew to Cleveland to a woman who was recently married. She was recuperating in the same room as her husband, who had donated a kidney for the chain. For the scientist in Denson, the donor chain is the best way to go, he said.
“One of the best parts of the National Kidney Registry is that they consider medically the best possible matches – six out of six antigens – the better the match the fewer drugs they have to take later on, and the longer the kidney will last,” he said, adding that his recipient was a five-out-of -six antigen match, which is really high. “It was likely she would keep this kidney happy and healthy for a long time."
Denson, who is very athletic, said recovery was easier than he expected. Following surgery he had to feel his scar to remember he’d had the procedure, and he has had to slow down some. He was back to work in 10 days, and his recipient’s insurance paid for all the costs. He wishes more people knew about the program. If a person can’t donate to a loved one, then they can donate through the chain and make it likelier their loved one will be matched with a kidney.
Denson said he’s had friends on dialysis, and it’s not a good life. He wanted to be able to spare others that fate.
“I feel like I donated to six people on the chain. There’s no telling when those other folks would have received a kidney,” he said. “It may have been a year from now. It may have been next week. You don’t know.”
There were moments, though, when he doubted his decision. “I had some of those irrational fears that you get. You wake up at 3 in the morning and think, ‘wait a minute – am I stupid for doing this? This is crazy.’ I think one of the cool things at MUSC is that my doctors, nurses and transplant coordinator were awesome. Every step of the way they said, ‘Are you sure this is what you want to do?’ – even to the moment they were rolling me into the operating room.”
Denson praised the skills of his transplant coordinator, Parker, who always made him feel he could change his mind. “I wouldn’t have followed through if she hadn’t been there on top of things and answering questions. “It wasn’t like, ‘We just want your kidney, now get out.’ They were really interested in me and my well-being.”
Parker said she enjoys working with incredibly healthy and well patients, which is very different from prior jobs she’s had in nursing. Donors have to go through a vigorous evaluation screening process, and MUSC is careful to follow up with them for at least two years after their donation.
“I’m sure it’s a scary process to be stepping forward to donate an organ to someone you really care about or to a total stranger. It’s saving someone’s life. Transplant and dialysis are the two treatment options that a person with kidney failure has, she said. “The option of dialysis is essentially being tethered to a dialysis machine three hours a day, three days a week, and it’s exhausting. To be able to take that away and give them a new life – it’s freedom in a lot of ways that they wouldn’t otherwise have.”
If a donor goes into kidney failure after they’ve donated, then they go onto the top of list should they ever need one. She hopes more people will become aware of the work of the National Kidney Registry and that MUSC can be a part of more chains.
MUSC joined the registry in late 2011, and Parker had been in her job as transplant coordinator for only four months when Denson volunteered. “He was highly educated, and he wanted to learn it all. It was a great experience for me.” Like Denson, she likes the logic and efficiency of the living donor chain approach. The Good Samaritan donation allows a chain to kick in among strangers where science and algorithms work to make better matches so recipients are less likely to reject the transplant, she said.
“It becomes a whole domino effect with the Good Samaritan being the tip of it. They cascade down.”
MUSC is one of 70 centers that participate in the National Kidney Registry’s living donor kidney program, and it is the only transplant center in this state. Sometimes our center will come up two or three times in a chain, which makes for an incredibly busy period, but it’s exciting," she said.
Parker said she’s motivated by the children who benefit from the program. “Seeing these little kids who have to be on dialysis is hard. I want to see them all have normal little lives and get transplanted – to be able to be free of dialysis and not be sick,” she said.
There are children, such as Cue, enrolled in the Children and High Panel-Reactive Antibody (PRA) Program (CHIP), who are unlikely to find a donor because they’ve developed immunological sensitivities making them likely to reject organs from most donors. Enter in the “miracle matches” afforded by the algorithm programs of the National Kidney Registry, and Parker gets to see more MUSC CHIP children helped. As a registry-affiliated institution, MUSC is granted 50 CHIP slots and Cue’s kidney, which came from a police officer, is considered “payback” for Denson’s non-directed donation on April 3.
In the end, Denson got his wish to help a child. Parker got her wish to check off another child on the CHIP list.
Parker said she has so much respect for the donors with whom she works.
“You’re 100 percent healthy, and you’re gearing up to go to surgery for really no benefit of your own. No one has asked you to do this but you’re just doing this because your heart is leading you that way. As long as his heart kept leading him that way, I told him I’d walk with him,” she said of her experience with Denson. “I would go to the OR with him. I was in the PACU when he opened his eyes. I told him that every step I would be there.”
Denson is doing well and back to his P90X and Insanity workouts. Parker is working with her fifth donor as MUSC moves on to new chains. Cue is eagerly awaiting a trip to Myrtle Beach.
“This job is very rewarding,” said Parker. “There’s happy in this job. There’s a lot of feel-good stuff that goes on. It’s nice to make a difference with one donation to make it six, 10, 12 or more lives that are changed, and we still change a life in our own hospital.”
To see the full multimedia transplant package, visit www.musc.edu/pr/newscenter/2013/donorchain.html. To learn about being a donor, contact email firstname.lastname@example.org or 792-4722.