NASCAR driver Ryan Newman discusses why he chose to be an organ donor.
Ashley Carter isn’t the type of person who typically donates blood. But last winter when the 24-year-old was scrolling Facebook and saw a dear family friend post that he might need a new liver, she did not hesitate to offer him part of hers.
Most other transplant procedures require a deceased donor to share an organ. The liver, however, is different.
This football-shaped organ can regenerate, or in other words grow back. This allows transplant surgeons to take part of one person’s healthy liver, implant it in another person, and within a matter of months, each person will have a healthy, working liver.
If it sounds improbable, rest assured Carter encountered several raised eyebrows as the Avon resident shared her plans to donate part of her liver to Wayne Brown, 65.
“Everybody’s like, ‘Wait, that’s a thing?'” she said. “I said, ‘Yeah, that’s a thing.’”
In fact it has been a thing since the late 1990s. Indiana University Health surgeons performed three living donor transplants about two decades ago as the surgery was becoming more common. Then a New York City man died after donating, and many programs halted the procedure and ramped up their cadaver donor programs instead.
Ashley Carter poses for a photo at the Simon Cancer Center in Indianapolis, Monday, Nov. 23, 2020. Carter donated part of her liver to her family friend, Wayne Brown, who has been waiting for a liver transplant since Dec. 2019. (Photo: Grace Hollars/IndyStar)
For years IU Health had little trouble finding sufficient livers for patients who required a transplant, said Dr. Shekhar Kubal, surgical director of the liver transplant program. Last winter, the United Network for Organ Sharing changed its rules for how livers are allocated to allow greater geographic equity. Now about 70% of livers donated in Indiana head outside the state, meaning patients here must be sicker and wait longer before becoming candidates for a deceased liver.
This 25-year-old had coronavirus in April. Four months later, she almost died.
Anticipating the changes, Kubal and colleagues decided to resurrect the living donor transplant program.
Earlier this month Carter and Brown became the program’s third transplant pair. While four decades apart, they share a love of greyhounds, having met through a greyhound rescue program. Brown never thought, however, that Carter would rescue him.
Last December the Plainfield resident fell ill. At first he thought it was the stomach bug, but when he went to the emergency room, he was diagnosed with cirrhosis. His doctors told him about the prospect of a living donor and asked whether he knew anyone who might step up. In June, he heard there might be a donor.
But he did not find out who that donor was until about a week before the surgery. The Carters asked him to stop by their house. Carter pulled out two T-shirts. One said, “I’m looking for a liver giver.” The other: “I de-liver.”
“So that’s when I found out that Ashley was my donor,” he said. “It’s amazing that she put herself at that risk and went through that difficult a procedure for me.”
Three weeks after the surgery, however, Carter said she is feeling well and has no regrets. Having her tonsils removed was harder than losing part of her liver.
Now, she said, she and Brown have a connection nothing can sever.
“I tell him all the time he’s stuck with me,” she said. “He’s definitely not getting rid of me at this point.”
Donor safety is key
Living liver donations take about 12 hours from start to finish, with the donor ideally positioned in an operating room next door to the one with the recipient. When IU Health decided to restart its program, two surgeons traveled outside the country to train in the procedure, Kubal said.
The surgeons had to perfect the technique of cutting one liver into two parts, both of which will work once the procedure is done. The surgeon has to consider the body weights of both donor and recipient to decide how to divide the liver.
“The operation is challenging and complicated, but at every step we have to ensure donor safety,” Kubal said. “Donor safety is the most important thing … because these are healthy individuals undergoing a major operation for a selfless reason, an operation they don’t need.”
From the standpoint of the recipient, a living donor liver tends to do better in the long run because the organ spends much less time outside the body and the donors have been carefully vetted for health, Kubal said. The donor’s liver regenerates in about two to three months.
Since starting the program this summer, IU Health surgeons have done four procedures and expect to do 10 to 12 a year.
Life is no longer on pause
Without the living liver program, Kelly Kinkade would likely have had to wait several more years for a new liver. Diagnosed with autoimmune hepatitis eight years ago, Kinkade talked to Northwestern doctors a year later about the possibility of a living liver transplant.
Her disease was affecting her brain to the point where her sleep cycle was reversed, she didn’t recognize the family dog, and she would get lost in her house. Still, she was not sick enough to be placed on the deceased donor transplant list.
Northwestern doctors tested about 10 friends and family and found no match. So instead of a transplant, Kinkade underwent a procedure that improved her mental status but did not help her liver. Then about two years ago, her IU Health doctors told her to hang on because they planned to start offering the procedure themselves.
Meanwhile, she developed complications from the medications she took to help her liver. Her skin fell off easily, and her bones grew brittle and several broke.
The Greenwood resident was a perfect candidate to become the first living liver recipient for IU Health’s restarted program. All she needed was a donor, and she found one in her first cousin.
The two were not particularly close, but her cousin Paul Stringfield said the decision to donate was not difficult.
“I just thought she’s been sick for so long, I wanted to help her out and make sure she could live a good life and not be sick all the time,” the north-side resident said.
On July 20, Kinkade and Stringfield became the first living liver donor-recipient pair at Indiana University Health in two decades. A vet assistant, Stringfield had to wait a few weeks to hoist dogs again, but now he feels like his normal self — just with a scar.
For Kinkade, now 34, post-surgery life was like returning to her early 20s in the days before she had first fallen ill at age 26.
A criminal defense attorney, Kinkade used to plan her days carefully, lest she not have the energy to work the full day or make it through an outing. Dating was off the table, and because of her health she was unable to live on her own, change jobs or even easily plan an afternoon outing to the zoo.
“I used to describe it as I felt my life was on pause,” she said. “Since the transplant, I don’t have to worry any more.”
While Stringfield, 24, said he feels happy to have been able to help his cousin, he said he rarely thinks about the sacrifice he made for her.
“It’s just part of my life now,” he said.
A ticking time bomb
As shocked as Kinkade and Brown were to have friends and family step up to donate, Matthew Prather is even more amazed to find himself the recipient of a stranger’s liver.
Ten years ago the 28-year-old was diagnosed with primary sclerosing cholangitis, a rare disease which leads to scarring in the liver. Because people with this condition have an elevated chance of developing liver cancer, he had to undergo regular tests of his bile duct cells. Often the procedure would find precancerous cells, unnerving Prather.
“I was like a ticking time bomb, so it was just a matter of time. … I always had the fear of cancer,” he said. “So I finally did everything to be on the transplant list.”
But like Kinkade, Prather wasn’t yet sick enough to be listed for a deceased donor.
Meanwhile, Carrie Rhodes felt called to donate an organ. Her husband has the same condition that Prather has, but his disease is managed well. When other loved ones in her life have fallen ill, the Greenwood resident yearned to ease their pain. Instead, she realized, she could do that for a stranger.
“I just really felt that Jesus put it on my heart,” Rhodes said. “This was something that I prayed about and talked about with my husband and family for quite a while. … I had this excitement to do this and try to save someone’s life.”
Rhodes, 35, considered donating a kidney, but when she reached out to IU Health last December and heard that partial liver was also a possibility, she gravitated toward that.
The pre-donation screening included extensive lab tests and a psychological evaluation in which Rhodes had to answer a litany of questions, such as how would she feel if her liver went to someone who had damaged his or hers by using drugs or alcohol? I’d hope that the person would take care of it, Rhodes answered. But when you give someone a gift, it’s just that, a gift.
A few months later Prather and his fiancee, Leia Peterman, were driving from St. Louis to Indianapolis for an appointment at IU Health. He was stopping for gas when his phone rang. I have a donor, the doctor said.
On Aug. 3, Kubal and his colleagues removed part of Rhodes’ liver and replanted it in Prather’s body. The team had told Prather that the donation would be anonymous, but during the long hours that their loved ones spent in the operating room, Peterman and Rhodes’ husband met, forging a relationship that deepened after the transplant.
Three months after the surgery, both Rhodes and Prather are doing well — though neither’s life will ever be the same.
“There’s not enough words that I could ever say to thank her,” Prather said. “Honestly, I would never want to put someone through that, but she’s very selfless. And it’s amazing what she did.”
Contact IndyStar reporter Shari Rudavsky at [email protected]. Follow her on Facebook and on Twitter: @srudavsky.
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