Organ Donation From Living Donors Can ‘Bridge the Gap’ for Kidney, Liver Patients
Jun 13, 2023 04:45PM ● By Liv OsbyFor most of his life, Vince Schiano did what he thought was important.
He graduated from college, took a job in the financial services industry, and was earning a six-figure salary by the time he was 30. But even after fulfilling a life-long dream of running with the bulls in Spain, he still felt that something was missing.
“I started to look around and realized my priorities were wrong,” said the Columbia, South Carolina, man. “I knew I needed to be doing something more.”
So when he learned that a colleague’s daughter needed a new liver, he volunteered to give her part of his.
The experience, Schiano says, changed his life, eventually leading him to write a book about the organ donation and his life before and after the transformative event.
“I came away from this with a real sense that I can accomplish anything I put my mind to,” he said. “And I got a real understanding of a more purposeful existence by helping other people.”
Most organ transplants are from people who have died, but living donor transplants have been increasing nationwide for several years.
While kidneys are the most commonly transplanted organ from a living donor, a portion of the liver can also be transplanted, according to the United Network for Organ Sharing. In liver donations, the donor is usually related to the recipient, the organization reports, and in rare instances, a segment of other organs can be transplanted as well.
In 2022, there were 6,467 living donor transplants nationwide, up from in 5,726 in 2020. In 2019, before the Covid-19 pandemic, 7,397 transplants came from living donors, UNOS reports.
“Living donation has really expanded … with technology,” said Tracy Moore, CEO of Donate Life South Carolina. “Now we can keep a kidney alive … in a machine for up to 72 hours.”
Dr. Teresa “Tracy” Rice, surgical director of the Living Donor Transplant Program at the Medical University of South Carolina, says there were 57 living donor transplants at the hospital last year, compared with 20 to 30 annually five years earlier.
There’s a huge need for kidneys, and there aren’t enough of them from deceased donors, she said, noting the average wait time for a kidney transplant in the state is five years.
“About 130,000 people are on the waiting list in the U.S.,” Rice said. “One way to bridge that gap … is living donors.”
Kidneys from living donors also work immediately and last longer, she said.
Anyone can donate a kidney so long as they’re in good health, Rice said, noting the risks of surgery are minimal with donors typically leading long, healthy, active lives afterward.
Transplanted kidneys last on average 20 to 30 years, Rice said, adding that recipients must be on antirejection medications the rest of their lives, though the dose tapers down over time.
Over the past year, MUSC kidney transplants have been done robotically, a process that offers 10 times the magnification and better instrument articulation, improving accuracy and resulting in quicker recoveries, she said.
Though MUSC is only doing living kidney donors currently, there are plans to add living liver donors at some point, Rice said.
“Donation of a portion of liver is higher risk to the donor and a more complex operation,” she said. “We want to make sure as we build programs, we do it safely.”
Living organ donors are “very special people,” Rice said, adding that those who donate to strangers are truly selfless.
“There are people who come forward who didn’t even know each other,” she said. “It’s remarkable that they would donate to someone they don’t even know.”
Last year, MUSC orchestrated a living donor chain involving eight people.
Among the donors was Cassandra Bilyeu of Simpsonville.
The 40-year-old detention center officer learned that a coworker’s friend’s sister needed a kidney in 2021, so she applied and was a match, though she wasn’t needed in the end. But she remained on the donor list and found out last August she was a match for another person.
“I already donate blood and platelets, and I’m on the bone marrow registry,” she said. “And I’m an organ donor too, so I said, ‘Why not?’ I have two kidneys.”
On Jan. 31, she donated one of them to 30-year-old Maggie Dean.
The Myrtle Beach mother of two says she was born with a deformed kidney and her other kidney eventually began to fail as well, forcing her on to dialysis four days a week, which carries its own set of burdens.
“Gradually, it got worse and worse,” she said. “And when I started dialysis in August, the kidney was functioning at 12 percent.”
She’s feeling better since the transplant, has more energy, and her appetite has improved, she said. And in April, she returned to her job as a server at a boardwalk restaurant where she is happy to see the ocean every day.
“I’d definitely take a transplant over dialysis any day,” she said. “Dialysis was really tough.”
Dean said Bilyeu’s kidney saved her life and that she, too, is amazed that she would donate to a total stranger.
“I’m glad she was my donor,” she said. “Now I’m here not having to do dialysis and not being on waiting lists and able to support my kids because of her. (Without her) I’d still be struggling. Now I’ll be here as long as the kidney lasts and have solid years with my children. I do love her.”
For her part, Bilyeu said the transplant was a positive and rewarding experience. She hasn’t suffered any negative effects, she said, and isn’t missing out on anything.
“The girl I donated to, she’s a mom with two kids,” she said. “Now she has way more of an expectancy to be with her kids and do things with her kids that she didn’t think she would do.”
The two women forged a special bond through the transplant and still talk nearly every day.
“I felt like I could help someone else,” Bilyeu said. “I’m glad I did it. It makes me feel good. I’d do it again.”
Furman University professor Sandy Roberson gave her adopted daughter a portion of her liver more than 20 years ago, even though they aren’t biologically related.
Today, both continue to thrive.
Jaundiced as an infant, Claire, now 22, was 9 months old when the transplant occurred, said Roberson, who is chair of the accounting and business department.
“When they told us she needed a transplant, we couldn’t imagine anything worse. We didn’t know anybody who had a transplant,” Roberson said of herself and her husband, Clay.
“We went home with a beeper and waited for months.”
In February 2001, Roberson was tested and in March, the right lobe of her liver was transplanted into her daughter, who improved immediately.
“I was ecstatic,” she said. “We have a picture of her in the PICU (pediatric intensive care unit) with 22 staples in her tummy and tubes everywhere. And she’s holding her binky and has the biggest grin on her face. We always thought she was a very serious baby, but she just didn’t feel good.
“When she got her staples out,” she adds, “she laughed for the first time. She was a totally new kid.”
Today, Claire is a student at the University of North Carolina Asheville.
“She has had a perfectly normal life,” Roberson, 64, said. “Her coming to us was destiny. She was meant to be our baby for sure.”
Claire Roberson says that while having a transplanted liver has always been the norm for her, she nonetheless recognizes how special it is, calling it “the miracle of getting a second chance at life.” Indeed, she says it’s impossible to express just how thankful she is to her parents.
“I feel like a lot of people say they couldn’t imagine their life without their parents, but I truly mean that in this case,” she said. “My mom has given me one of the best gifts in the world, and I am forever, deeply grateful for her. I go forward with each day with a goal to live my best life, because if I did not have my mom – I might not have had this chance.”
Moreover, she says the transplant community has afforded her the opportunity to meet many amazing people who have also helped shape who she is today.
Moore said the liver regenerates very quickly for both the donor and the recipient.
“They have learned so much,” she said. “It’s much safer than it used to be.”
Schiano, 37, said his surgery took place on May 30, 2019, and that he’s also doing well.
“Eighty percent of what they removed grew back in two weeks,” he said. “I have no lingering health issues. I can run. I do cross fit. I play golf. I have a good life.”
These days, he said, he’s also washing a lot of bottles for the new baby he and his wife, Mercedes, welcomed this spring.
What’s more, he said, the recipient, whom he never met, gave birth to a child in 2021.
His book, “Always Forward,” took more than two years to complete, he said, as he wrote it early in the morning before going to his job as a market supervision manager for Merrill Lynch.
“It was very fulfilling,” he said. “A labor of love.”
After “mostly no responses from publishers,” Schiano said he published it himself, noting it had sold about 400 copies by April.
In it, he said, he recounts some of the introspection he experienced before the transplant.
“For the better part of my life,” he said, “I don’t know if I asked core questions about what I wanted out of my life.”
The surgery not only gave him purpose, but led to other positive events, such as finding the woman who would become his wife, he said.
“She was very encouraging,” he said. “She supported me all the way.”
And writing the book, he said, gave him confidence to become involved in the community in a positive way. So today he volunteers for speaking engagements to share his story.
“My favorite part is helping others,” he said, “and I’m surrounded by wonderful people.”