Doctors Still Don’t Know What Caused This Man to Lose His Limbs—but They Were Able to Miraculously Give Some Back
A mysterious illness cost a healthy, athletic man parts of all four limbs. But thanks to one doctor’s groundbreaking surgery, the patient got a piece of himself back.
On Monday, January 26, 2015, Jonathan Koch awakened feeling awful. God, I’m sweaty, he thought. Even my knees are aching. And what’s up with my freezing-cold feet?
Jonathan was supposed to be on the day’s first flight from Los Angeles to Washington, DC; as the co-runner of a reality TV production company, he was expected at an important conference that afternoon. Instead, he headed not to the airport but to Providence Tarzana Medical Center, where doctors—finding no cause for his discomfort—gave him a shot of morphine and sent him on his way. He made it to DC, checked in to his hotel, and fell into bed by midnight.
The next morning, he could barely get up. Why does my body feel like concrete? he wondered. His eyes were beyond bloodshot. He stopped by Rite Aid for some Aleve, Clear Eyes, and Extra Strength 5-Hour Energy, then dragged himself to his first meeting. Midway through his second, Jonathan looked at a colleague and saw three of her. When he stumbled in the hallway a minute later, she insisted on taking her boss to the emergency room. “You’ve got work to do,” Jonathan told her. “I can get there on my own.” A taxi dropped him off at George Washington University Hospital around 11 a.m. His temperature was 102 degrees.
Michael Lewis for Reader's Digest
Other than a knee surgery and a history of kidney stones, Jonathan Koch’s body had never failed him, and he’d always returned the favor. At six foot one and 225 pounds, the 49-year-old former wrestler was an exercise addict who led a daily predawn workout for friends. One colleague called him Superman for his drive and relentless positivity. He didn’t drink or smoke. He ate a high-protein diet and loved his sleep; he and his girlfriend, Jennifer Gunkel, were typically in bed by 9 p.m. Now doctors in DC wondered if he had pneumonia. Between all the tests, the blood draws, and the pain that surged through his limbs, he texted Jennifer: “They are killing me in here, baby.”
Tuesday night fell, and the hospital admitted Jonathan to the ICU. His condition remained a mystery, and the pain was beyond debilitating. His circulation slowed; his hands and feet were turning blue as his body pulled blood from his limbs to protect his vital organs. Around 2 a.m., Dr. Lynn Abell leveled with Jonathan. “Text everyone you love,” she said. “You’re probably going to die tonight.”
By the time Jennifer arrived in DC Wednesday night, doctors had put her partner into a propofol-induced coma. The next day, he was in full-blown septic shock. With his outer extremities deprived of oxygenated blood, gangrene set in. Despite huge doses of antibiotics, Jonathan’s body “was getting ready to die.” Chance of survival: 10 percent.
Most of us think that patients who are put into a medically induced coma fall into a peaceful sleep. In fact, many people who’ve been “put under” have terrifying hallucinations or nightmares. As Jonathan lay unconscious over the following weeks, he had both. He believed he was being held hostage by a family of ghouls with giant faces and jagged teeth. Lashed to a wood bench, he was bitten repeatedly by snakes. He sensed the presence of his 15-year-old daughter, Ariana, despite her being nearly 3,000 miles away. (With Jonathan’s condition so uncertain, Ariana, who had bronchitis, stayed home with her mom.) Jonathan and his daughter had a tight bond. Each February since prekindergarten, they’d attended her school’s father-daughter dance—once they’d even crashed another school’s. Now he was missing the dance for the first time.
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On the final day of his two-and-a-half-week coma, Jonathan saw himself in an empty, misty room with two doors. He understood that one door was the way back to existence; the other, the way out. Then he heard a deep voice. “If you choose to live, there will be a price that is so heavy that at times you’ll regret it,” the voice said. “If you decide to go back, it will be the fight of your life.” Jonathan knew his answer. A fight? Bring it.
In an instant, he was propelled upward like a torpedo through dark water that grew lighter and lighter. Finally he burst through. His first words were “How did I get here?” Then he looked down at his feet, which were strangely black and beginning to shrivel. “Wow,” he said. “Impressive.”
Courtesy Los Angeles Magazine, Illustration By Comrade
During Jonathan’s 39 days at George Washington, his hands and feet became necrotic, or as he put it, downright “Egyptian”—leathery, mummified, charcoal black. Doctors sought to discover what had thrown his system into chaos, ruling out candidates one by one. He didn’t have measles or Lyme disease (here are the symptoms of Lyme to look out for). There was evidence that he had antibodies to the Epstein-Barr virus, which can result in chronic fatigue syndrome, but 95 percent of adults have the virus and do not develop complications. For a while, doctors thought he might have a rare bone marrow cancer and started him on chemotherapy. Their strategy: Treat every possibility at the same time. And it worked; he survived.
That March, hoping to discover what had caused his illness, Jonathan made the difficult decision to leave GW to travel to the Mayo Clinic in Rochester, Minnesota. “The one thing I don’t understand,” he admitted to Dr. Abell on his last day at GW, “is, why did this happen?” Dr. Abell’s response: “Jonathan, the reason you took such great care of yourself was not to avoid this. It was to survive this.”
Still, Jonathan’s time at Mayo was rough; his limbs were in constant, unspeakable pain. He’d lost 40 pounds. His hands and feet, wrapped in gauze, looked like paws. Doctors at Mayo began to discuss the possibility of amputations and, perhaps eventually, a transplant for his ruined left hand. Mayo had a division devoted to the procedure but had yet to perform one.
On April 20, 2015, 85 days after Jonathan had been admitted to GW, he and Jennifer told Mayo they wanted to return to Los Angeles for Ariana’s 16th birthday. That was when someone mentioned a doctor whose name they’d never heard before: Kodi Azari.
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Azari, 48, is the surgical director of the Hand Transplant Program at UCLA. The field is still relatively new. The first hand transplant to achieve prolonged success was performed 18 years ago in Louisville; by 2015, fewer than 85 procedures had been undertaken worldwide. But Dr. Azari is at the forefront. He has traveled the country as a lead surgeon in five hand transplants, including the first double-hand transplant and the first arm transplant in the United States.
The doctor had some hypotheses he wanted to test, provided he could find a patient with the ideal requirements: excellent health, enormous self-discipline, and—rarest of all—a limb that needed to be replaced but had not yet been amputated. Most hand-transplant candidates have been injured in accidents or in battle, when a catastrophic event forces an emergency amputation to minimize suffering. Generally that means the arm is severed closer to the elbow than to the wrist, and the nerves and tendons are trimmed and tucked inward to lessen discomfort. All those tucked-in nerves and tendons tend to merge over time into a jumble that is difficult to connect to a new hand with precision.
Wouldn’t it be great, Dr. Azari thought, if a transplant recipient’s arm could be amputated in a way that prepped it specifically to receive a new limb? How much more quickly would a patient recover if each tendon, nerve, artery, and vein were left in place and marked like so many colored speaker wires to be hooked up to a matching apparatus? Dr. Azari believed this fantasy patient would awaken post-op, look at the new hand, and be able to move the fingers right away. Now all he needed was the right patient.
And then he met Jonathan. Dr. Azari set about examining his patient, body and mind, a week after his return from Minnesota. 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 blackened, the rest could be saved. Damage to the left foot was mostly confined to the toes, but the right looked as if it had been fashioned wholly out of charcoal briquettes. “Get rid of it,” Dr. Azari said. “It’s a no-brainer.” Something about his affect—direct, gentle, kind around the eyes—calmed Jonathan and Jennifer. “I will make you this promise,” Dr. Azari said. “I will not do anything to make you worse.”
On June 23, 2015, determined to save as much healthy tissue as possible, Dr. Azari amputated Jonathan’s left hand and about half of each finger on his right. Severing the left hand closer to the wrist than to the elbow, Dr. Azari kept all the nerves and tendons long and extended, which would give him plenty to work with later.
Oddly, losing his left hand didn’t faze Jonathan. It had been such a source of pain, its absence brought only relief.
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There was much to prepare for the chance at a perfect hand transplant. UCLA, where Dr. Azari hoped to perform the surgery, required Jonathan to undergo myriad physical and psychological tests. Then came the challenge of matching a donor’s left hand with Jonathan’s in terms of size, skin tone, and hair pattern. The closer the match, the easier it would be to incorporate into his life.
While he waited, Jonathan tried to “scrape back” something each day, reassuming responsibility for tasks that he’d once taken for granted. He taught himself to hold a fork using the stubs of the fingers that remained on his right hand and mastered grabbing a stylus to type texts and e-mails on his phone.
On August 17, 2015, Jonathan and Jennifer were married in a tiny ceremony in their backyard. The next day, doctors amputated Jonathan’s right leg midway between his knee and his ankle and snipped off the necrotic toes on his left foot. Jonathan tried to joke about the horror of watching parts of himself disappear, calling himself Mr. Potato Head. But the loss of his foot hit hard. “The hardest part for me has been in the period of subtraction,” he said. “This is the beginning of the period of addition.”
Eight weeks after his foot surgery, Jonathan was fitted for his first prosthesis; he walked right away. Soon he would upgrade to a Triton smart ankle, a bionic contraption he could adjust for whatever type of movement he needed to do. He’d also have a prosthesis for running called a Rush foot. “Eventually I’ll have a special tuxedo leg for the Emmys,” he joked.
Dr. Azari was less at ease. “The clock is your enemy,” he says. “Hand transplants throw you curveballs. And there is no cookbook on how to do it.” So like a chef trying out a dish before serving it, Dr. Azari and his team practiced Jonathan’s surgery several times in the anatomy lab.
After Jonathan’s name was formally added to the transplant recipient list, he and Jennifer waited seven months to get the call. On October 24, 2016, a donor candidate was found who shared Jonathan’s blood type and had a hand that matched his.
Michael Lewis for Reader's Digest
The next morning, Jonathan walked into the Ronald Reagan UCLA Medical Center at 9:45. Dr. Azari met him at intake with a hug and a promise: “We’re going to do this.” As Jonathan went to be prepped for surgery, Dr. Azari hit the road, heading to another Southern California hospital. It was time to pick up Jonathan’s new hand.
When Dr. Azari arrived, the donor was on life support, and the doctor had the rare opportunity to meet the donor’s brother and pastor. 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. Across town, Jonathan was started on an anesthetic drip, and Jennifer prepared to wrap her husband in one more embrace before saying goodbye.
At 3:32 p.m., the first cut was made to prepare Jonathan’s arm. Dr. 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. 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 bone, affixing the hand just four centimeters above the wrist.
Tick, tick, tick. They were only a few hours in, with at least a dozen more to go. The team sutured a few key tendons together. Then 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,” Dr. Azari says. They were also tough with scar tissue, which made suturing them 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. Those vessels were shortened and resutured.
Various tendons were similarly tightened, particularly in Jonathan’s pointer, middle, and ring fingers. “We went back and did these three tendons many times until we got them right,” Dr. Azari says. The tendons of the forearm, meanwhile, were woven into one another over a three-inch span to maximize strength and resist tearing. The resulting bulge is permanent.
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 returned to the tissue, and the pulse began to pound. It was exhilarating.
For several hours, the surgeons worked to complete repairs on the remaining tendons. At 7:07 a.m., the hospital called Jennifer to tell her that the team was closing and suturing. The procedure’s official stop time: 9:09 a.m. They’d been at it for 17 hours and 37 minutes.
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Jonathan’s first words after emerging from the anesthesia were “Did you do it?” When Dr. 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 your thumb,” she told Jonathan. And he did.
The total cost of Jonathan’s transplant and follow-up care is impossible to measure, but some past procedures have cost about $1 million.
So what made him sick? He will never know for sure. Jonathan says the consensus is that exposure to the Epstein-Barr virus, combined with stress, may have triggered “a one-in-20-million event.”
Now 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 was 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. 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.
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 black leather high-tops and took Ariana, a high school senior, to their final father-daughter dance. Fourteen red hearts decorated his lapel—one for each dance they’d attended together. Few people other than Ariana knew that his attendance itself was a miracle.