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How do you express gratitude to a woman who gave you a literal piece of herself so you can live? Months after receiving a liver transplant from a donor she now calls a friend, Caitlin Balint, 38, is still trying to figure that out.
“She is a genuine, courageous, selfless girl,” says Balint, a mom and runner from New Fairfield, Connecticut, who had been battling end-stage liver disease. “How do you thank someone who gave you a new chance at life? To give me more opportunities with my daughter, go on trips with my family. How do you thank somebody like that? She’s just amazing.”
That amazing woman is 25-year-old Sophie Long, once a stranger and now considered a member of Balint’s family, who donated 60 percent of her own liver to Balint in February. Living liver donors are possible because the organ regenerates back to its full size within eight weeks. (The transplanted liver also grows to full size.) But of the 8,896 liver transplants performed in the United States in 2019, just 524 came from living donors, according to the Scientific Registry of Transplant Recipients.
Although the surgery and recovery came with significant risks, Long, a two-time New York City Marathon finisher and math teacher from Darien, Connecticut, never second guessed her decision.
“It always just felt really right,” Long says. “There was not any sort of reservation on my end and getting to know [Caitlin] made it all the more special.”
At 17, Balint was diagnosed with autoimmune hepatitis and cirrhosis of the liver, and as an adult, she developed primary sclerosing cholangitis, a rare liver disease.
Despite those challenges, Balint always set ambitious goals. When she could no longer play high school soccer, a contact sport, due to her condition, Balint took up running and competed in college. She also went on to become a registered nurse, working in interventional radiology and in emergency rooms and intensive care units.
She has run the Boston Marathon for the American Liver Foundation, and in 2013, gave birth to her daughter, Reagan, now 7.
“As soon you give up, the disease beats you,” she says. “You have to keep pushing ahead. That has always been my approach with it. I wasn’t going to let the disease control me. I was going to live my life.”
But that became increasingly difficult in early 2020, when her failing liver caused excruciating cramping, fluid buildup, and swelling in her legs and hands. She was exhausted, and “running that once came with ease was hard and slow,” she says. Her condition became so painful she had to stop working.
Since her diagnosis as a teenager, Balint knew that she would eventually need a liver transplant. In August 2020, doctors at Yale New Haven Hospital told her the time had come to search for a new one.
“My reaction was, ‘Wow, it’s here,’ like reality was kicking in,” she recalls. “And the other half [of me] was like, ‘Finally. Let’s get this over with and move on with my life.’ But it was also overwhelming and scary.”
Every year, about 12,000 people in the U.S. are waiting for liver transplants, according to government statistics. It’s a process that can take years, and many patients die while waiting.
A Call to the Running Community
A Facebook page, “Cait needs a liver.” was set up to get the word out; stories in the local news and beyond (including one on Women’s Running) followed. Browsing Facebook in August 2020, Long, who was preparing to move to pursue a master’s degree at Boston University, noticed that Megan Searfoss, her boss and owner of a local running store, shared that Facebook page.
Searfoss knew Balint from the group runs that met at her store, Ridgefield Running Company. Long worked part-time at Ridgefield Running Company but didn’t recall ever meeting Balint. Still, she immediately felt a connection to her after reading the post.
“I couldn’t stop thinking about it and started researching. That day I submitted the form to Yale to see if I could be a match,” she says. “It’s hard to explain. I felt like I could be a match for her.”
When Searfoss took the lead in getting the word out to the local running community about Balint’s search, she also felt hopeful.
“I had this weird feeling when I sent out the initial posts that [the donor] would come from our running community,” she says. “Many of the store employees put their names in the ‘Yale hat.’ Runners help runners. It’s who we are.”
After learning that she was a blood-type match for Balint, Long was called into Yale for more extensive testing, which included an EKG, echocardiogram, chest X-ray, and MRI. She was also evaluated by two mental health professionals and met with a host of specialists and doctors.
In the meantime, Balint awaited updates from her transplant coordinator and remained optimistic. Her symptoms had improved and she was running again. In January, she got the call to tell her that not only did Yale have an approved donor, her transplant team was ready to schedule the surgery for later that month.
“I was shocked,” she says.
She only knew the donor was a young woman who wanted to run with her someday. Not long after, Balint and her husband happened to stop by Ridgefield Running Company to chat with Searfoss about her donor match and upcoming surgery.
As they talked, Searfoss realized the donor had to be Long. After Balint left, she called Long and excitedly asked if she was indeed Balint’s donor. Yes, said Long, and she would love to talk to her. Searfoss introduced Long and Balint through a group text, and they instantly bonded.
“It was really, really special to be able to talk to her prior to the surgery,” Long said. “We spoke pretty much every day. We talked a lot about running, how she was feeling, how we were looking forward to runs together.”
They briefly met in person on the day of transplant before being taken to surgery prep. In the operating room, Balint let the tears flow as she got onto the table surrounded by her transplant team, which she describes warm and supportive.
Her moment had come.
A Test of Hope
In the first few days after their successful surgeries, Long and Balint, sore and tired, walked loops around the transplant floor together. They talked about their future runs and watched Skid Row Marathon, a Netflix documentary.
On the mend, both women were discharged from the hospital, but Balint faced complications within days. During a check-up, doctors discovered she had developed hepatic arterial thrombosis, a life-threatening condition that disrupts blood flow to the liver. Surgeons raced to clear the blood clot, only to discover another one 12 hours later.
Balint says in many cases, transplant patients who develop hepatic arterial thrombosis wind up losing their new livers.
“The liver was pink and it still looked healthy, and that’s really because of Sophie’s liver,” she says. “She is so young and healthy that it could take that damage and still be OK.”
As Long healed from her own surgery, she received updates from Balint’s family and worried about her new friend.
“My biggest concerns are and always will be with how she is doing,” Long says.
After the second round of surgeries, Balint was back on track, but exhausted. At home, walking once around her dining room table called for a nap afterward. Recovery has been mentally tough for someone used to being active.
“I’ve had to sit back and kind of let my body tell me when it’s time to go, instead of me saying, ‘OK, this is what we are doing,'” she says.
Many Miles Still to Run
Week by week, Balint has regained enough strength for walks, short jogs, and brief Peloton rides. Her husband, Dave, says Sophie’s gift to his wife was a gift to many people.
“Obviously, her decision provided Cait with a new lease on life and everything that comes with it,” he says. “What’s less obvious is what didn’t happen. Reagan and I and the rest of our family didn’t have to watch Cait deteriorate into a hospitalized state. We didn’t have to navigate encephalopathy or a feeling of helplessness waiting for the stars to align for a suitable, compatible liver to be available. Cait was spared that inevitability as well.”
Instead, she is dreaming big and finding her running legs again. On May 2, she went to a track with Dave and Reagan and ran for the first time since surgery. “It felt very good to be out there using my lungs and legs again,” she says.
On the same day, a few hours away in Boston, Long also took her first running steps since surgery. She felt some abdominal discomfort from her large incision, but, like Balint, enjoyed every step. On Mother’s Day, Balint ran and walked a virtual 5K with Dave and Reagan and feels excited about her future.
“I am very optimistic. I think that’s the only way you can be,” she says. “You have to give yourself goals and go for it.”
One big goal is to run the Boston Marathon with Long in 2022 to benefit The American Liver Foundation. While Balint continues to heal—the first year following a transplant is critical—Long hopes to be ready to run a marathon in the fall. So far, she’s been healing well.
But for now, the pair’s greatest goal lies just ahead: finally going on that run together.
“We were brought together because of our love for running,” says Balint. “The bond between us now runs deeper than just our love for running. She saved my life and gave me a new one. She is a hero, an angel, and a role model. We’ll run together but also as one.”