For over a decade, Keith Tully knew he would need a liver transplant one day. He had primary sclerosing cholangitis (PSC), a rare autoimmune condition that causes the body to attack its own bile ducts. These are the thin tubes that transport bile from the liver to the small intestine.
Over time, his PSC medications stopped working. The disease damaged, scarred, and narrowed his bile ducts, leading to blockages and infections. Cirrhosis followed, as did other serious complications.
Keith's brother, wife, and two daughters were all tested as potential liver donors. No one was a match. Someone who later stepped forward appeared to be a match but was found to be incompatible prior to the planned transplant surgery.
At this point, Keith's life was in grave danger. Without a new liver, he would have just a few months to live.
Scott Dickinson was worried about his longtime buddy. Upon learning of the failed donation, he told Keith he wanted to see if he was a match.
"We grew up in Syracuse, New York, and were friends from kindergarten on," Scott said. "We were on the same sports teams, from pee wee soccer through high school. We've kept up with each other since, even though I ended up in Florida and he ended up in Massachusetts."
The first step was for Scott to call the Living Donor Liver Transplant Program at Massachusetts General Hospital, a founding member of Mass General Brigham.
The advantages of living liver donation
With deceased donation, the most common type of liver donation, patients are placed on a national waitlist. However, many more Americans are on the list than donor livers that are available. Remaining on the list too long can put patients at risk of dying or becoming too sick for transplant.
In many cases, living liver donation offers a better alternative. The donor can donate up to 70% of their liver. After two or three months, the liver grows back close to its original size.
Living liver donation has many advantages for recipients. It's generally faster than waiting for a liver from the organ waitlist. Both the recipient and donor can pick one surgery date that fits both their schedules. Receiving the liver in a timelier fashion can prevent further health complications. Livers from living donors usually last longer.
The thorough evaluation that a donor candidate undergoes also has benefits for the recipient, said transplant hepatologist Irun Bhan, MD, medical director of the Living Donor Liver Transplant Program.
"We want the liver to be as healthy as possible because what's left in the donor must be able to regenerate over time," Dr. Bhan said. "The portion that's removed is not diseased at all and will function very well right away. With a deceased liver donation, there's always some uncertainty about organ quality."
A look at the living liver donation process
The Living Donor Liver Transplant Program supports both the donor and the recipient during the donation process. Donor nurse coordinator Alichia Paton, CNP, is the first point of contact for prospective donors. On the initial call, she reviews the process and asks high-level screening questions.
"The donor has to be a blood-type match," Alichia explained. "They need to have a healthy body mass index. And they need to be between 18 and 60 years old, as the risk of complications is otherwise too great."
Alichia next reviews medical records, orders screening bloodwork, and hosts a virtual education session. Donor candidates who clear those hurdles then come to Massachusetts General Hospital for a comprehensive medical evaluation. The prospective donor undergoes imaging tests to check liver size and anatomy. Besides Alichia and Dr. Bhan, they meet with a surgeon, infectious disease specialist, psychiatrist, nutritionist, social worker, and other members of the care team.
As part of the evaluation, the donor candidate must meet with a donor advocate. This individual's sole job is to make sure the donor understands the donation process and is free from pressure.
After the evaluation, an expert committee reviews all of the labs, images, and team consultations. They also confirm the eligibility of the prospective donor and the safety of the donor and recipient.
"At any time during the evaluation we feel the donor is at heightened risk for complication from the donation, we stop the process," Alichia noted. "Donor safety is our no. 1 priority."
Most people who inquire about the possibility of liver donation don't actually become donors. Many are found to be ineligible for medical reasons. Still others decide against it for logistical reasons, such as not being able to take off extended time from work.
"Along the way, I was probably asked 90 times if I wanted to do this," Scott said. "And I was like, 'I'm all in. If I'm a match, I'm doing this.'"
As it turned out, Scott was a match. And he followed through as promised.
'Alichia was the quarterback'
Soon after his initial call with Alichia, Scott flew to Boston for his evaluation at Mass General. As a busy dentist with four offices, he didn't have much time to spare. The Living Donor office managed to accommodate his schedule.
"I got in all my tests and appointments in two days. The team was so efficient," Scott said. "Alichia was the quarterback from the start. She was the one who made everything happen."
Two months after the evaluation, Scott returned to Boston for surgery. He completed preoperative testing and got the chance to spend some time with Keith.
"He kept it together pretty well, but I could tell he had a lot on his mind," Scott said. "If my donation didn't work out, he would have been too advanced into liver failure and become ineligible for a transplant. I'm sure that was running through his head."
Scott and Keith each had their surgery at Mass General. Surgeons first removed a portion of Scott's liver. In another operating room, surgeons removed Keith's entire liver and replaced it with the piece of Scott's liver.
Afterwards, both patients were placed in rooms on the same floor of the Surgical Intensive Care Unit (SICU). The next day, Scott ventured down the hallway to see Keith.
"I popped my head in and asked how he was doing," Scott recalled. "He said, 'I feel like I was hit by a truck.' I said, 'Yeah, the same truck hit me.' But overall, we were both doing well."
A subsequent visit from Keith's daughters was much more emotional. "That's when it hit me," Scott said, fighting back tears. "They just broke down, thanking me for saving Keith. I hadn't thought about it like that before. How do you respond to that? I just said, 'You're welcome.'"
Appreciating the magnitude of the impact made
Scott spent two days in the SICU and another five days on a regular floor. After discharge, he stayed at an apartment rental in Boston for two weeks and at his sister's house in New Hampshire for another two weeks. During this time, he visited Keith in the hospital and had several appointments with the Living Donor Liver Transplant Program.
Recovery after a liver donation is not easy. The large surgical incision can be painful as it heals. The donor will also feel very tired for the first couple months, as their body is working hard to regenerate the liver.
Donors with physical jobs should plan to take 12 weeks off after surgery. For those with less physical jobs, six weeks is the target. Scott did some remote consultations beginning at about two weeks out and then went back full time around the six-week mark.
A veteran of the U.S. Army, Scott has always stayed in good shape and bounced back quickly from surgery. Within three months, he was running two to three miles a day and up to 10 miles on weekends. Six months post-surgery, he and Keith ran the Pensacola Half Marathon together.
"I'm not 100% where I was physically before the operation, but I'm close," Scott said. "I don't run anymore due to a leg injury, but I still walk five to 10 miles a day, swim, water ski, and work full time. I can do pretty much everything I used to do except eat fettuccine Alfredo."
Scott and Keith text weekly and see each other once or twice a year. They share an unspoken understanding of their special bond, according to Scott.
"He's never sat down and given me the big thank-you speech, and he doesn't have to," he said. "This wasn't a one-way street. For me, donation was a short-term disruption with a lifelong return. I've got a 14-inch scar on my stomach that's a reminder of the lives I've touched. Keith will walk his daughters down the aisle. He'll grow old in his rocking chair next to his wife. His parents won't have to bury him. Knowing I've made that kind of impact is a forever reward."
When speaking with a prospective donor recently, Scott shared a poignant insight: "Most of us have the gift of being able to give someone else a life," he said. "It's just a question of whether you'll do it. If the time comes, that's the gut check."
