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It seemed too much to hope for: a top-flight hand transplant expert in L.A.? A week after they returned home from Minnesota, Jonathan, Jennifer, and her dad, Tom, were sitting across from Azari in an examining room at UCLA Medical Center. Dr. Francis Cyran, an orthopedic surgeon, was there as well. Jonathan, bleary from pain meds and his feet unable to bear any weight, sat in a wheelchair.
Azari set about the sensitive task of examining his patient, both body and mind. He started with Jonathan’s left hand, which was completely ruined, with a charred-looking exterior except for a tiny patch of palm. The right hand was better off; while the fingers and thumb were almost entirely blackened, the rest seemed like it could be saved. Then there were the feet. Damage to the left was mostly confined to the toes, but the right looked as if it had been wholly fashioned out of charcoal briquettes. “Get rid of it,” Azari said. “It’s a no-brainer. It isn’t salvageable.” Jonathan and Jennifer weren’t ready to accept that, but something about Azari’s affect—he was straightforward, gentle, kind around the eyes—calmed them. “I will make you this promise,” Azari told them. “I will not do anything to make you worse.”
Finally Jennifer inquired about bathing. At Mayo they’d been told that Jonathan’s extremities could not get wet. Without skipping a beat, Azari told Jonathan to “go ahead and shower.” Jennifer and her father exchanged glances—had they heard correctly? Azari reassured them that being clean would help Jonathan feel like himself, and that, after all, was their ultimate goal. “We knew immediately,” Jennifer wrote in her notebook later, “that these were our doctors.”
The couple was impatient. “They’re like, ‘OK, we’re ready. Let’s do the hand transplant. When are you going to list us?’ ” Azari tells me. He loved their enthusiasm but advised them to slow down. There was more healing to be done. “You need to make sure that you’ve gotten all these necrotic tissues off and that we’ve gotten you tuned up,” Azari said, “and as healthy as possible. I want you to even walk.” Azari admits that at first he wondered whether Jonathan might be too good to be true. “I thought, ‘He can’t be for real. This is all a show for me.’ But I set all these goals for him, and he met them all.”
Since returning home, Jonathan and Jennifer had settled into a routine. Every day they’d unwrap his hands and feet, clean them, and rewrap them. The mundane tasks that Jonathan once had handled solo became a round-the-clock team effort: eating, holding water bottles to his lips, getting to the bathroom, driving to doctors’ appointments. Every day, too, Jonathan would work out with Scott Zeller, a six-foot-seven, 275-pound trainer Jennifer had recruited to come to the house.
Like Rocky as he sprinted through the streets of Philly, Jonathan was determined to get his heart rate up. Because he couldn’t put any weight on his withered feet and couldn’t grasp dumbbells, he used Zeller’s body as resistance, pressing his thighs or shoulders against him. At times it felt “like somebody’s holding a Bic lighter underneath my fingertips,” Jonathan would say. Withdrawing from morphine and feeling groggy, he’d do a set of exercises, then drift into unconsciousness. Zeller would wake him when his rest period was over, Jonathan would kill it, then fall back asleep.
Exercise buoyed Jonathan, allowing him to focus outside himself. Soon work would do the same. In June 2015, he began hosting meetings with Asylum colleagues and clients at his house. One took place right after he’d endured a session with a vascular surgeon who believed that his right foot might still be saved if she regularly scraped away infected tissue—a procedure called debridement—to allow the healthy tissue underneath to heal. On this day, though, it was as if “she started amputating my foot without anesthesia, a little bit at a time,” he said.
“I couldn’t wait for them to cut it off,” he said. “I had divorced myself from it.”
Comedy, often the dark kind, was everpresent. Visitors to their home were encouraged to try to beat Jonathan’s time tearing around an indoor course in his electric wheelchair. Once the toes on his left foot looked ready to auto-amputate (a natural occurrence by which the body sheds dead appendages), friends started a pool, betting when it might happen. Jonathan appeared depleted, tired, his once-thick hair patchy and thin. At the same time he was utterly himself, cracking jokes and sending selfies on the iPhone he had Velcroed to his bandaged left paw. Sure, his corporeal self was a mess, he told me. But “you are not your body.”
On June 23, 2015, determined to save as much healthy tissue as possible, Azari amputated Jonathan’s left hand and all but about an inch of each finger on his right hand. The surgery, designed to prep him to receive a transplanted limb, was everything the doctor had imagined. Severing the left hand closer to the wrist than the elbow, Azari kept all the nerves and tendons long and extended, which would give him plenty to work with later. Then he sutured them together and attached them to the stump of bone to keep them from retracting. If a hand donor was ever found, Jonathan would be ready.
Oddly, losing his left hand didn’t faze Jonathan. It had been such a source of pain, its absence brought only relief. “I couldn’t wait for them to cut it off,” he said. “I had divorced myself from it.” Plus he knew this loss paved the way for a possible win.
There was much to do to prepare for that chance at victory. UCLA, where Azari hoped to perform the surgery as part of a clinical trial, required that Jonathan undergo numerous physical and psychological tests. Then there was the challenge of matching a donor’s left hand with the hand Jonathan had lost in terms of size, pigment, skin tone, and hair pattern. The closer the match, the easier it is for a patient to incorporate a new limb into his or her life. Jonathan, being Jonathan, had decided to get an early start on that process. Just weeks after losing his hand, he was explaining to friends that “my hand is already transplanted. It’s already done.” He’d adopted this approach, he said, from the book The Inner Game of Tennis. “Instead of thinking about what you’re doing,” he summarized, “you think about what you want to have happen and let your brain do the rest.”
While he waited, he tried to “scrape back” something each day, reassuming responsibility for a task or skill that he’d once taken for granted. He taught himself to use a fork using the stubs of the fingers that remained on his right hand. He also mastered grabbing a stylus to type texts and e-mails on his phone.
“I like this hand. I earned it,” he said of his battered right hand as the summer of 2015 wound to a close. Looking forward to the day when his missing left hand would be replaced, he asked his daughter, “If you were going to hold one of my hands—the transplanted hand or the hand that looks like this—which one would you hold?” Ariana didn’t hesitate. “I’d hold your paw,” she said.
On August 17, 2015, Jonathan and Jennifer were married in a tiny ceremony in their backyard. The next day Dr. Cyran amputated Jonathan’s right leg midway between his knee and his ankle and snipped off the necrotic toes that remained on his left foot. Jonathan had tried to be funny about the horror of watching parts of himself disappear, calling himself “Mr. Potato Head.” But the loss of his foot hit hard. “You’ve got to know when to wave the white flag and move on with your life,” he told me, already re-adjusting even as he acknowledged partial defeat. “The hardest part for me has been in the period of subtraction. This is the beginning of the period of addition.”
The Waiting List
Six weeks after his foot surgery, Jonathan slipped while transferring his weight from his wheelchair. As he lost his balance, his brain got confused. “It said, ‘Don’t worry, you’ve got that other foot. Just bring her on down!’ ” But of course, his right foot was no longer there, so he broke his fall with the not-yet-healed stump that remained. “I really stuck the landing,” he says, recalling the bloody mess.
When Azari heard what had happened, he was stern—had Jennifer not found him, Jonathan could have bled to death. “You can’t fall once I do the transplant,” Azari warned, glancing meaningfully at Jennifer, whom he’d nicknamed G-Love. Even as Jonathan teased—“Jennifer pushed me over!”—he also understood that it was time to learn how to walk. Two weeks later, once his right leg had sufficiently healed, he was fitted for his first prosthetic; he walked right away. Soon Jonathan would upgrade to a Triton Smart Ankle, a bionic contraption that could be adjusted to accommodate whatever type of movement he needed to do. He’d also have a prosthetic for running called a RUSH foot. “Eventually I’ll have a tennis leg and a running leg and a special tuxedo leg for the Emmys,” he joked. “We’re still working on my sex leg.”
For nearly a year Steve Michaels and other colleagues at Asylum Entertainment’s Encino headquarters had kept the business going. Jonathan appreciated the slack they’d cut him, but it was time to get back to the office. Jennifer drove him there. Several coworkers cried when they saw him walk through the door, but Michaels did something even more moving. He resumed a debate they’d been having for years: Was the thermostat that controlled their adjoining offices too low or too high? “It was just like old times,” Jonathan says.
Azari was hard at work as well. Experience had taught him to not get cocky. “The clock is your enemy,” he explains. “Hand transplants throw you curveballs. They’re never as you expect. Never. There’s huge bumps in the road that can add extra time—things you didn’t account for or changes in plan. And there is no cookbook of how to do it.” So like a chef trying out a complicated dish before serving it to patrons, Azari and his team practiced Jonathan’s surgery several times in the anatomy laboratory.
Then, procuring a donor hand for a full-on test run, he assembled a prestigious group of 13 surgeons and transplant medicine physicians whose mind-sets were as vital as their skill sets. A hand transplant is a collaboration, he explains; egos have to be kept in check. The doctors worked not just at UCLA but also at USC and the Irvine, San Diego, and Panorama City locations of Kaiser Permanente. Even today Azari’s eyes well up when he thinks about the members of the team. “They came from competing organizations that often don’t get along. They’re usually trying to take each others’ patients” he says, noting that because this was a clinical trial, nobody would get paid and everyone would have to reschedule for-profit procedures if they were to participate. “Nevertheless the leaders of those organizations said, ‘This is for the greater good. We’re going to let our members go and help you.’ And they didn’t ask for recognition; they just wanted to be part of taking care of Jonathan.”
Two months later Jonathan’s name was formally added to the transplant recipient list, which meant the surgery could happen at any time. He and Jennifer would wait another seven months to get the call. During that time, for a variety of reasons, a couple of donors who seemed promising didn’t work out. But on October 24, 2016, a donor candidate was found who shared Jonathan’s blood type, B-positive, and had a hand that matched his. Azari had a good feeling.
UCLA called Jonathan to confirm that he was healthy. If he had a cold, there wasn’t any point in asking the donor’s family for the hand. In the transplant world, asking for a hand is more fraught than asking for an internal organ. The hand is so personal, so visible, so central to identity. The procurement team’s concern was this: If a family believed the removal of a hand would disfigure their loved one, they could become upset and refuse to donate any organs. So while the hand that had been located for Jonathan seemed perfect, nobody approached the donor’s family until the recipient answered the phone. At 7 p.m., Jonathan reported that, yes, he was healthy. The donor’s family also said yes. The surgery was a go.
The Ticking Clock
The next morning Jonathan Koch walked into the Ronald Reagan UCLA Medical Center at 9:45. Azari met him at intake with a hug and a promise: “We’re going to do this.” Azari felt that Jonathan, with whom he’d been in near-constant contact over 19 months, was practically family—“an expensive family member,” the surgeon told me. “I’ve had to up my texts to unlimited!” As Jonathan went to be prepped for surgery, Azari and the rest of his procurement team hit the road, heading to another Southern California hospital. It was time to pick up Jonathan’s new hand.
Because of confidentiality agreements, nothing about the location or identity of the donor can be made public. When Azari arrived, the donor was on life support, and the doctor had the rare opportunity to meet the man’s brother and his pastor. They greeted him warmly, and Azari was overcome with emotion. “It was a very good omen,” he recalls. In the operating room, where the hand and other organs were to be removed by several surgical teams, the entire staff took a moment to say a prayer of gratitude.
While Azari prayed, Jonathan was started on an anesthesia drip, and Jennifer prepared to wrap her husband in one more embrace before saying goodbye. For years they’d repeated a comic ritual in stressful situations. Now would be no different. As Jennifer leaned in, Jonathan whispered in her ear, “The best pizza is…” and then pretended to pass out.
At 2:58 p.m. Azari texted Jennifer. “All is going well,” he wrote. “We have left the donor hospital en route to UCLA.” As it happened, President Obama was in Los Angeles that day. Would the ensuing traffic blockades delay delivery? This was more than a potential inconvenience. The longer a hand goes without blood flow, the higher the risk of deterioration. A helicopter was put on standby but wasn’t needed; Azari and his team, with their cargo tucked in an ice chest, encountered little traffic. Another good omen.
At 3:32 p.m. the first cut was made to prepare Jonathan’s arm. All the components were tagged and marked for easy access. Azari arrived within the hour and joined his team. The first curveball came right away. The doctors had planned to sever the radius and ulna bones at about 11 centimeters above the wrist. But after opening up Jonathan’s arm, preserving more bone seemed possible. Even though the radius and ulna showed some deterioration, the surgeons thought they could repair them by scooping out the sick parts and packing them with healthy bone. This approach might enable the arm to heal better and have more range of motion, but there were no guarantees.
The surgeons went around the room and came to a unanimous decision: Preserve another seven centimeters of each of Jonathan’s bones, affixing the hand just four centimeters above the wrist. The change could have created a delay, because now the titanium plates being used to join the donor’s and recipient’s bones were the wrong kind. But this wasn’t Azari’s first rodeo. He had a representative from the plate manufacturer on-site, and a replacement was quickly found.
Tick, tick, tick. They were just a few hours in, with at least a dozen more to go. Next the team sutured a few key tendons together. Then, working from the inside out, the doctors moved on to the arteries and veins. Here came the second curveball. Because of the gangrene and the lack of use, Jonathan’s veins and arteries were very small—“like chives,” Azari says. They were also tough with scar tissue, which made suturing them together exponentially more difficult. As the team continued repairing the musculature of the arm, pulling it more tightly together, the arteries and veins they’d attached early on began to protrude, like a loop of extra yarn. The surgeons had expected this. Plastic surgeons always leave more of everything than they think they’ll need on the first pass because the excess can always be trimmed, and it’s harder to add more later. Those vessels were shortened and resutured.
Various tendons were similarly tightened, particularly in Jonathan’s pointer, middle, and ring fingers. Azari and his team would set the extensor tendon tension, then decide whether it was too loose or too tight, which would affect function and range of motion. “You have to set the balance precisely, and we went back and did these three tendons many times until we got them right,” he says. The tendons of the arm, meanwhile, were woven into one another over a three-inch span to maximize strength and guard against tearing (the resulting bulge will never go away).
At 11:01 p.m., after the doctors had removed the tourniquets and clamps, Jonathan’s new hand went from white to pink to red. The fullness—or turgor—returned to the tissue, and the pulse began to pound. It was nothing short of exhilarating. The team posed for a picture. The doctors could afford, for the first time all day, to take a moment.
For the next several hours the surgeons worked to complete repairs on the remaining tendons. At 7:07 a.m.—16 hours after the operation began—the hospital called Jennifer to tell her that Azari and his team were closing and suturing. That took nearly two hours, in part because Azari was determined that everything should look “perfect” for G-Love. (“I know she is going to drive me nuts if it’s not,” he says fondly.) More than once the surgeons tied the outermost sutures, only to reopen them to trim away a little more skin—“just like a tailor would,” Azari says. After that, Jonathan’s arm was put in a splint. The official stop time of the procedure: 9:09 a.m. They’d been at it for 17 hours, 36 minutes.
Jonathan’s first words after emerging from the anesthesia were “Did you do it?” When Azari answered yes, Jonathan looked down at his new hand and started singing the theme song from Rocky.
Jennifer arrived at the hospital about an hour later. It was her birthday, and she was ready for her gift. “Move any finger. Move your thumb,” she told Jonathan. And he did.
Getting Back to Life
Kodi Azari walked into Jonathan Koch’s hospital room and was met with a thumbs-up. Jonathan added to the motion an enthusiastic “Ayyyy,” just like Arthur P. Fonzarelli’s signature greeting in the television show Happy Days. “I’m like, ‘What did I do to deserve this guy?’ ” Azari tells me later.
Azari is eloquent when he talks about his gratitude to his employer, which he lauds for “believing in something and pushing the frontiers.” But the frontiers don’t come cheap. The total cost of Jonathan’s transplant and follow-up care is impossible to measure, but past procedures have typically cost about $1 million. Private insurers don’t cover hand transplants because they want proof that a transplant benefits a patient more than conventional prosthetics. That leaves pioneering surgeons in a chicken-and-egg situation. “If nobody pays for it, you can’t get the numbers to be able to give that proof,” Azari says. The result: “If the [research] institutions don’t believe in this, then this whole field will die.”
To Jonathan that would be a travesty. “Look,” he’s told anyone who would listen at UCLA Medical Center. “You’ve got to put a flag in the ground so that people who are fund-raising for you can say, ‘UCLA has done something that nobody else has ever tried, and it worked.’ ” To me he says, “I’ve told them, ‘Use me as a prop.’ ”
In truth, a prop is exactly what Jonathan’s new hand felt like to him at first. “I can’t get my brain around it,” Jonathan would say, a difficulty Jennifer put into words by temporarily nicknaming it “The Strange.” Then, suddenly, he could. “My brain came back together,” he tells me. “Literally, it was like I came back into my body, and I could resume, you know, reparations.”
There has been discomfort, of course. The antirejection drugs he will take the rest of his life were initially administered at high doses, making Jonathan feel “crawly and hot”—like he had molten Jell-O in his veins. And he had limited feeling because nerves take months to grow in. Still, during Jonathan’s 15 days at UCLA, there were many breakthroughs. A week out, Jonathan picked up a tennis ball and squeezed it. Two days later he grabbed a water bottle, brought it to his lips, and—with a theatrical flourish—wiped his mouth with the back of his new hand. Then one day Jonathan and Jennifer looked up and saw Dr. Mike Seneff, the director of George Washington University Hospital’s ICU.
Jennifer had known Seneff was coming for a visit. Yet from the moment he walked in the room, she felt like crying. How many times had she seen him standing at the foot of Jonathan’s bed in D.C., his arms crossed, his face somber? Ever the researcher, Jennifer found herself fact-checking her own records, asking the doctor, “Is it right Jonathan had a 90 percent chance of dying?” Yes, Seneff said, turning to his former patient. “I’m 61 years old, and you are the sickest person I’ve ever seen walk out of the hospital.”
So what made Jonathan sick? He will never know for sure. When the three of us gather in their living room, with its views of the northwest Santa Monica Mountains, Jonathan says the consensus is that exposure to the Epstein-Barr virus, combined with stress, may have triggered “a 1-in-20 million event,” he says. “For some reason my immune system encountered a very formidable foe, and instead of trying to save me, it tried to kill me.” Jonathan believes that he could have been better about managing stress—specifically his sense of responsibility to his company and his colleagues. “I don’t show my feelings that much. Since I was a little kid, I’ve been holding things in,” he says. “So these were self-inflicted wounds, not anybody else’s fault. My own doing.”
He is focused on what’s ahead. At the crack of dawn every day, Jonathan goes to UCLA for occupational therapy to improve his motor skills and flexibility. Just five months postsurgery, he is already dribbling a basketball, jumping rope, and teaching himself how to play tennis again, holding the racket with his new left hand. He is back to leading intense “Insanity” workouts for friends, and he’s learning to use a set of prosthetic fingers fitted to his right hand. He can, once again, tie his own shoes, and his Range Rover has been equipped with the pedal and knobs he’ll need to resume driving. At some point a tattoo artist will disguise the slight difference in skin tone between Jonathan and his new hand with a bit of well-placed ink.
Before he fell ill, Jonathan imagined that upon retirement, he would become a wrestling coach. Lately he’s begun wondering whether there’s a way to help motivate not just people who want to master headlocks, but others, too. “People tell me I’m an inspiration,” he says, admitting he’s still getting used to that. Recently he spoke in public for the first time about his last two years, and he and Jennifer have talked about the possibility of a speaking tour someday.
There will always be sacrifices. He can’t eat sushi due to the risk of exposure to the bacteria in raw fish. He must wash his hands constantly. He can’t eat grapefruit, as it impedes the absorption of certain medications (“Luckily I hate grapefruit,” he says), and he must be forever vigilant about looking for signs of organ rejection. Though that likelihood will decrease over time, it could happen at any point.
Meanwhile there is life to enjoy. Recently Jonathan put on a dark suit and tie, a crisp white shirt, his Triton Smart Ankle, and a pair of shiny high-top black leather sneakers and took Ariana, a high school senior, to their final father-daughter dance. Fourteen red hearts decorated his lapel—one for each dance they’ve attended together. Few people other than Ariana knew that his attendance itself was a miracle. “I’m not in the past tense,” he tells me. “I’m still right here, in the present.”
Amy Wallace is a writer based in Los Angeles. You can read more of her work at amy-wallace.com