A Liver to Share

A father, his son and their doctors tell how a new kind of transplant procedure saved one life and transformed another
Scott and Josh Linscott
“Josh called me and said, ‘Dad, what are you doing next Monday?' I said, 'I don’t know, just lying on the couch, dying,’ and he said, ‘No, we’re having our transplant,’” says Scott Linscott, shown here with Josh. Photo: Kathleen Dooher
September 29, 2016

Share

Not many people will ever need a liver transplant, but for those who do, the live-donor option may save their life. That’s what happened in May 2012, when Joshua Linscott, M18, gave part of his liver to his father, Scott. Performing that transplant were Elizabeth Pomfret, a professor of surgery at Tufts Medical School and chair of the Department of Transplantation at the Tufts-affiliated Lahey, and her husband, James Pomposelli, an associate professor of surgery at Tufts. The following conversation has been edited and condensed for clarity.

Scott Linscott: I’m 52 years old and live in Westbrook, Maine. I’m a photographer, and now also minister of a church. Back in 2005, I had a gallbladder surgery. Also at that point I was morbidly obese, almost 320 pounds. During that procedure, they saw that my liver was pitted and showing some scarring. The diagnosis was fatty liver disease.

The doctor said we needed to start monitoring it, because it could end up that one day I would need a transplant. Over the next six years, I would have annual checkups where they would either do an endoscopy or an ultrasound. Nothing really changed. In 2009, I changed my lifestyle and started losing weight. By 2011, I was feeling good. I was able to ride my bike 15 and 25 miles at a time and was down to about 245 pounds. That’s when some other complications started rearing their heads, and my liver was clearly going downhill.

Josh Linscott, M18, Scott’s son: At first it was a “He may need a transplant” type of thing. But as he continued to decline, I became more and more worried—first, about whether he might become too sick to do the transplant, and then if we would have everything lined up in time to be able to take care of him before things were kind of too late.

In May 2011, it was determined that Scott Linscott would need a liver transplant.

Scott: Josh volunteered to donate his liver immediately. They had nine people who volunteered to go through the whole testing process to be a donor, but we never had to go any further than Josh, because he was a perfect match.

Josh: When I got the call from my mom saying that he needed a transplant, I just knew it was going to be me.

Scott: Josh and I have always been close, from my coaching him through all the levels of baseball, and driving him to gigs when they had a band, and doing all that stuff.

Elizabeth Pomfret, professor of surgery at Tufts and chair of the Department of Transplantation at Lahey: The first successful living donor liver transplant happened in 1989 at the University of Chicago. It used to be that you needed a whole liver from somebody who had died. But Christoph Broelch, the man I’m shown with in that photo [she points to a framed image on the wall], took this smaller part of a mother’s liver and transplanted that into her baby daughter.

About 60 percent of the time in a live-liver donation, the patient and the donor are related, and the most common relationship is child to parent. Anyway, that girl has since graduated high school, college, and I think she’s engaged to be married.

Transplant surgeons Elizabeth Pomfret and James Pomposelli. Photo: Kathleen DooherThe liver is unique because it regenerates. It’s one of the only organs where you can take a piece of it that functions like the whole. I mean, that’s extraordinary—you can’t do that with a kidney, for example. So the diseased liver comes out entirely, and you replace it with just a portion of a liver. For a baby, you take a very small amount, typically about 20 percent of a donor’s liver. You need a lot more for an adult recipient—typically about 60 percent if you’re a larger person, and if you’re smaller in size, a 40 percent portion would be OK.

When it comes to live-liver donations, the risks are bigger than with kidneys, and the recovery is longer. With a kidney donor, you’ve got two kidneys and you’re taking one out, and you’re not likely to damage the other kidney because it’s on the total opposite side of the body. With a liver, you’ve got one liver that you need to split. There’s a significant chance that you could damage the part that’s staying there.

James Pomposelli, associate professor of surgery at Tufts and Elizabeth Pomfret’s husband: It’s a much bloodier operation. The liver is very vascularized, so you can bleed more. A live-liver transplant is one of the more technically challenging operations done anywhere.

Pomfret: Which is why there are only a few places that do it. Imagine the liver as your body’s manufacturing plant. That’s where all your proteins are made, all your clotting factors. Everything gets detoxified there. That’s its job, so when you do something like this—for the donor, taking 60 percent of your liver means acutely dropping your liver function by 60 percent—you put a huge demand on the part that’s remaining.

When you’re transplanting, that new liver has to kick into gear and start working, and you need to control it from rejecting when the body realizes it’s not the liver you were born with. It’s very complicated. But one of the biggest benefits of live-donor liver transplants is that you significantly reduce death on the waiting list.

A person who is able to have a live-donor transplant has about 25 percent less chance of dying while waiting for a transplant. That’s because, with a deceased-donor transplant, the patient typically has to get sick enough to reach the top of the waiting list. With a living donor, though, you time the transplant to get the person in the best shape possible. In other words, you’re starting with a healthier person.

Scott: They want to transplant you at a MELD [Model for End-Stage Liver Disease] score of 20 to 22—the lower the better—while you’re still healthy, and your recovery tends to be much better. But by the time we hit March of 2012, I was too sick for a live donor. I had a MELD score of 36. I was that sick.

When your liver starts to fail, all your other systems start to fail. They’re all connected. So I was having issues with fluid leaking into my lungs so I couldn’t breathe. I was having to have my lung cavities drained fairly regularly. I was having to have fluid drained out of my abdomen. I was having issues with cramping and muscle wasting. I was in a mobility chair—one of those scooters. That’s when I was taken off the transplant list, for that little blip of time.

A model of a liver, held by transplant surgeons James Pomposelli and Elizabeth Pomfret. Photo: Kathleen DooherThey’re not going to put another liver in you when you’re too sick to recover. Especially from a live donor, when you’re getting 55 or 60 percent of the donor’s liver. You have to be healthy enough to grow that other half of a liver in order to survive. If you’re not strong enough, they’re not gonna go with a live donor for you. They’re going to say, “You’re too weak, you need a cadaver donor, you need a full liver, because your body’s not going to have the energy or the ability to recover and to grow another half of a liver.”

That was the only time in the process that my wife, Robin, lost hope. That’s what really turned up the urgency with Josh. He started calling Lahey and saying, “Listen, when can we get this thing done? I’m ready.” He was in the Ph.D. program [in pharmacological research] at Weill/Cornell in Manhattan, and they were ready to let him go at any point, give him the time off. It was a nephrologist up here in Maine who, after consulting with Lahey, got me on a medication that regulated my adrenal gland, helped my kidneys balance the sodium, and cleared the infection. That was when my MELD score dropped down to a 27 or 28, which put us in the range of being able to have a live donor again.

I remember toward the end of April 2012, Josh called me and said, “Dad, what are you doing next Monday?” I said, “I don’t know, just lying on the couch, dying,” and he said, “No, we’re having our transplant.”

Pomfret: Where the live-donor liver field has peaked is in Asia, because most of Asia believes that taking anything out of your body means you won’t be able to go to the afterlife. You have to go as a whole person. Consequently, it was against the law in Asia to do a donor surgery using brain-dead donors.

Pomposelli: In this country, however, we depend on brain-dead donors. When people die and the heart stops, you can’t get organs out of those people. There are millions of people who die every year, but only about 8,000 people a year die in the U.S. in a way that you can use their organs. They have to be brain-dead. A typical donor whose organs we can use might have had a gunshot wound to the head, or maybe a stroke. So the heart is beating, but the brain is dead.

Pomfret: Asians were really the ones who expanded living donation. They did the first adult-to-adult operations. Hepatitis B and hepatitis C are rampant in that area of the world, so they have a huge amount of liver disease, and they don’t have cadaveric donation. So either they were going to make something work with live people, or all these people who needed donations were just going to die. India is a place that’s exploding with live-donor transplants.

Pomposelli: In China, it’s the same thing.

Pomfret: The whole U.S. experience is extremely small in comparison. In Korea, they’re doing about 300 people per year. Our program has done 300 total. So the East/West picture is very different. I just finished a term as president of the International Liver Transplantation Society, because our reputation in the world is that we at Lahey clearly have the largest volume for the West.

Pomposelli: Immunologically, a live-liver transplant is relatively easy to deal with. A kidney transplant is technically a much easier operation, but immunologically more difficult; the liver is more forgiving.

Pomfret: The risk associated with liver donation is directly related to how much liver you take out of the person: the smaller the amount of liver tissue, the less risk, and the more likely they’ll be back to normal quickly. How can we take the smallest amount of liver tissue from this donor and have it be sufficient for that recipient? Another important thing we have to determine for the donor is, can we physically divide their liver in two without harming the part that’s staying, and is that enough for the needs of the recipient. And then, do we have all of the correct “plumbing” to be able to take the donor’s liver and hook it into the recipient.

To determine all of that, we take a CT scan here and send it electronically to Bremen, Germany, where a group of mathematicians and radiologists has come up with software that makes 3-D models of the liver for us. Then I can know, OK, this is where we want to divide the liver. And when I ask, “How much liver tissue is that?” they can tell me, for example, “This amount of liver is 183 grams of liver tissue.”

Pomposelli: Once we’re ready to begin the transfer procedure, Liz usually starts with the donor first. I usually wait at least an hour.

Pomfret: There are two staff surgeons. There’s also a fellow who’s already finished residency. There’s usually a resident in the room. There’s a scrub nurse and a circulator. Two anesthesiologists. A pump tech. There are probably a dozen people.

Pomposelli: We try to time the procedure so that the diseased liver is about to come out when the donor liver is about to come out, so there’s no wasted time. Once we’re ready, Liz will take the donor liver out; we’ll flush it with preservative solution, and bring it over to the recipient room. There we’ll take that liver out and put the new one in. The donor liver is out of the body for only about an hour, which is another advantage to live donation, because the amount of time the liver is out of the body influences outcomes. With a liver, you can go up to nine or 10 hours, but after that you start getting nervous.

Pomfret and Pomposelli performed Scott’s transplant in May 2012.

Scott: On the day of my transplant I remember them giving me something to calm me down before the surgery—that’s about it. Afterward, I was in the hospital for two weeks, trying to get all my systems working. I was weak. I remember the first time standing next to my bed, and it was a great victory to stand for 30 seconds. Then they’re trying to move you to sit in a chair. And being able to sit in that chair—you can only take it for 10 minutes because it hurts too much.

You’re going through a reboot, and the pain was beyond anything I had ever experienced. I think it was Dr. Pomposelli who told me, “You’ve not only been hit by a truck, but the truck backed up and ran over you again. You’re gonna hurt for a while.” But my wife says that I told her, “This hurts, but for the first time since I can remember, I don’t feel sick.” I felt different right away, and people remarked that my color was different and that my eyes seemed clearer.

Josh: My own recovery was fairly rapid and not too complicated. When I did the donation, I was 24 and really healthy. I had been working out and was going into the hospital in good shape. A week later, I could tie my own shoes—which didn’t seem like anything to me, but the team kept saying, “Wow, look at how well you’re doing!”

Scott: I try to mark each anniversary with some accomplishment, so this year, the three-year anniversary, I did the Trek Across Maine, which is a 180-mile bike ride in three days. I got up on my bike as quick as I could after the surgery and started riding. Four-and-a-half months after transplant, I did a 10-mile ride for cancer. Second year, my goal was a 50-mile ride in one day and 100 miles in a week, and I accomplished that goal.

Josh: Life is going very well, which both my dad and I are blessed to say. Around the same time I was preparing for the transplant, I ended up talking to a woman who is now my wife. We were becoming friends, and I was going through this whole process with my dad. She and I talked more and more, getting closer, and really hit it off.

Scott: It’s kind of funny, because Josh went to college saying he was going to be a doctor. Then, while he was an undergrad, he talked to doctors who said, “Nah, you don’t really want to do that—you won’t have a family life.” So instead, Josh went into chemistry and got his Ph.D. in pharmacological research. While we went through the transplant together, he says it became clear to him that he had to be a doctor. Because he was lying there in his room, and with Lahey being a teaching hospital, the Tufts students would come and he’d hear them outside his room talking about cases, and then one or two each day would get to come into the room with the doctor. Josh said to himself at that point, “No, this is what I’ve always wanted to do. This is what I’m going to do.”

Josh: I think my dad’s heard me tell that story several times, but it really was like that.

Scott: So he accelerated his Ph.D., and now he’s in the Tufts medical program, and got accepted into the Maine Track, which means that he and his wife could move back here to Maine, which we were thrilled about. This summer we renovated our basement into an apartment for Josh and his wife. Now we have Josh and his wife, Kristin, living in an apartment in our house, and they just had their first baby nine days ago, so we’ve got our grandson, Calvin, here.

Josh: So in going through the transplant, I ended up changing careers, finding a wife, getting to come back to Maine, which was my home, and having a son. It’s really worked out a lot better than you would ever imagine having end-stage liver disease would lead you to. It couldn’t have ended any better.

Bruce Morgan can be reached at bruce.morgan@tufts.edu.

This article first appeared in the Spring 2016 issue of Tufts Medicine magazine.

If You Like This

March 21, 2017
February 16, 2017
February 2, 2017