Hollywood executive's mysterious, almost fatal, illness led to a life-changing hand transplant

Jonathan Koch underwent an 17-hour surgery for a new left hand.

ByABC News
May 19, 2017, 4:01 PM

— -- Jonathan Koch was at the top of his game as a successful Hollywood entertainment executive when suddenly his life came to a screeching halt. He became gravely ill and his body was quickly shutting down, but doctors couldn’t figure out why.

But Koch has defied unthinkable odds over a two-year medical odyssey -- one in which he narrowly escaped death and gave him a new left hand in a remarkable feat of science.

Koch produced dozens of projects, including the movie “Ring of Fire” that he worked on with singer-songwriter Jewel and TV series such as “The Kennedys.” In 2015, Koch was traveling from Los Angeles to a reality television conference in Washington, D.C., when he was suddenly hit with symptoms that seemed like the flu, but decided to power through.

“I felt like I had been hit by a truck,” Koch told ABC News “Nightline.” “[The conference] was a very important trip for my team and they had been preparing for a long time… I needed to be there.”

Executive Producer Jonathan Koch speaks onstage during "The Capones" panel discussion at the REELZCHANNEL portion of the 2013 Summer Television Critics Association tour at the Beverly Hilton Hotel, July 28, 2013 in Beverly Hills, Calif.
Frederick M. Brown/Getty Images

Koch drove to the emergency room and said doctors there gave him a shot of morphine before he dragged himself onto the cross-country flight. He made it to D.C., but within 24 hours, he was in the Intensive Care Unit at George Washington University Hospital, his body was in septic shock and doctors had no idea what was killing him.

The man who treated his body like a temple -- he never drank or smoked and was an exercise fanatic -- was now being told he had hours to live.

He said doctors even urged him to text loved ones, so he texted Jennifer Gunkel, then his girlfriend of seven years, but couldn’t bring himself to text his 15-year-old daughter, Ariana.

“I made a very conscious decision with the last moment of consciousness I had not to text my daughter because when they told me that I had a small chance of living ... that was the moment that I decided that I just can't die. I can't. I can't do it,” Koch said. “She shouldn't grow up without her daddy.”

Koch was placed in a medically induced coma. When Gunkel got his texts, she rushed to his hospital bedside and documented what was happening in a series of emotional video diaries. Koch’s doctors said his odds of surviving were just 10 percent.

“It was described to me as multiple organ failure. His lungs, even his heart, his kidneys, he had to have dialysis,” Gunkel said. “Everything was shutting down.”

Gunkel had been entrusted to make life-or-death decisions for the divorced, devoted dad, and said she kept thinking about his daughter. Every year since she was in kindergarten, Koch had taken Ariana to a father-daughter dance and now he was missing it for the first time.

“I was just thinking about his daughter and thinking, ‘She can’t be without her dad,’” Gunkel said. “Every moment, every decision I made was for this little girl … and that was a really scary thing for me.”

During his coma, Koch said he experienced powerful nightmares, but the last one, he said, presented him with two doors and gave him a choice.

“A voice, a very deep, very distinct male voice -- I don't know if it was my own consciousness, if it was a doctor by my bedside, if it was God, I really don’t know even to this day, and it said, ‘If you do decide you want to live, it's going to be the most vicious, painful, awful fight every day for the rest of your life,’” Koch said. “When he put it that way I was, like, ‘That, I get,' so I said, ‘Yes.’”

The instinct to fight was something Koch had within him since he was a young boy mesmerized by the movie “Rocky.” He first saw it when his father took him to a drive-in movie when he was 11 years old.

“From that moment forward, I just knew that what was inside of me was way more than I had ever thought before that day,” he said.

For him, Koch said the “Rocky” story was the “gospel.”

“First of all, he didn't win. Rocky didn't win, People don't really think about that,” he said. “It's about doing the work. It's about putting everything you have into it. If you just literally do your best at everything, that's really all you can do.”

After his near-death experience, Koch emerged from his coma two-and-a-half weeks later and asked Gunkel to marry him.

“I wanted to marry her,” he said. “That's the truth. We were not married and probably planning on not being married.”

The damage to Koch’s body was severe. As he was headed into septic shock, his body had started pulling blood and oxygen away from his outer limbs to protect his internal organs, causing his hands and feet to turn black and start to die, necrosis and gangrene setting in. He said the pain in his hands felt like “somebody is holding a Bic lighter underneath my fingertips all day, every day.”

Doctors wanted to amputate, but Gunkel intervened and asked them to wait. She began searching for other options and eventually stumbled upon the possibility of a hand transplant.

Only 85 hand transplants have ever been attempted globally. One of the pioneers of the field is UCLA’s Hand Transplant Program -- led by world-renowned surgeon Dr. Kodi Azari, who was looking for his next patient when Koch was referred to him.

“I was looking for someone who was motivated, who was healthy and hadn’t had his amputations done,” Azari said.

Since Gunkel has made the critical decision not to have Koch’s left hand amputated, and he had lived a healthy lifestyle, he became a perfect hand transplant candidate for Azari.

Koch, who eventually lost the bottom part of his right leg, parts of his fingers on his right hand and all of his toes, decided a hand transplant for his left hand seemed like a better option than having the hand amputated and living with another prosthetic limb.

“When you have transplantation, they often times will put you through psychiatric exercises, and one of the questions they ask me is, ‘Why do you want another hand?’” Koch said. “And I thought, ‘Well, I mean, you have two.’ You know, ‘I think the world's built for two, and I can handle it.’”

Azari and his team began the process by first amputating Koch’s left hand, preserving his nerves and blood vessels for the transplant surgery. Azari then instructed Koch to get stronger and healthier, and to mentally prepare himself for what was coming next.

“His mental toughness was what actually got me to fall in love with his personality,” Azari said. “He is an eternal optimist like I have never seen before.”

When it came time to have his right leg amputated, Koch said it was an “extraordinarily painful moment” for both him and Gunkel.

“She was crying with me, and it was a real get-it-out cry,” Koch said. “The admission that we had lost that battle was really tough for both of us.”

But Koch kept fighting. After his amputation surgeries, Koch started working with trainer Scott Zeller at his home.

“I walk into their home gym and he's in a wheelchair, hands and feet wrapped and I'm like, ‘Ah, what am I supposed to do with that?’” Zeller said. “I’m looking around, like, ‘How about the stairs? … Knees and elbows, dude.”

Koch spent a year and half undergoing rigorous training, doing sets up and down the stairs on his knees and elbows to get stronger. He was then fitted for a prosthetic for his right leg and said the moment he learned how to walk with the prosthetic was a huge milestone.

“Jennifer was crying,” Koch said. “I could see Scott in the mirror because I was walking toward where he was behind me and I could see this big smile on his face.”

“It was heart-warming, chilling, almost incomprehensible,” Zeller said.

As Koch worked on getting stronger, he and Gunkel set a date and got married in August 2015.

“Our wedding day was very sweet,” she said. “It was really not eventful which is the way we wanted it to be. It was really a 30-second ceremony and it was joyous and happy and we really didn't want anything to change … after we got married we got something to eat, like we always do.”

Their honeymoon period involved waiting for a donor. Finding a good match is a challenge, Azari said, because unlike internal organ transplants, the donor hand had to be the correct size, skin color and hair pattern. It took seven more months before Koch got the call.

He was wheeled into surgery in October 2016. The surgical team said a special prayer of gratitude for the donor and began a marathon 17-hour surgery.

A team of 24 nurses and doctors from competing hospitals collaborated to successfully attach the donor hand. The 24 tendons, countless nerve endings, veins and arteries had to be microscopically stitched together.

“Hand transplants are marathon surgeries because there are so many structures that need to be repaired,” Azari said. “Initial fears are that the vessels are going to clot and blood is not going to move through the hand. … There's no margin for error.”

VIDEO: Hollywood exec's incredible story of undergoing a medical miracle

The total cost of his hand transplant surgery was estimated to be hundreds of thousands of dollars, but UCLA waived the cost in the name of research that could help others.

It was Gunkel’s birthday when Koch emerged from surgery.

“She said, ‘I just want one thing. I just want you to move one of your fingers,’” Koch said. “And I didn't think there was any chance I could, but I thought about it and it moved.”

“Soon as we walked into Jonathan's room he gives me the old thumbs up just like the Fonz used to do,” Azari said. “I'm like, ‘This guy … he’s absolutely perfect.’”

Azari said the surgery was successful, but the recovery was far more treacherous than Koch had anticipated.

“I woke up. My mind wasn't right,” Koch said. “I wasn't breathing as well as everybody had wanted me to … I was telling Jennifer, you know, ‘I'm drifting away and … I can't get back in into my life and control what's happening with me.’”

“All the work that I had done since getting home with Scott, and I working out my wheelchair and trying to crawl up and down the stairs on my elbows and knees, all those things I did to rebuild myself, they came right back into play,” he said.

But ever the fighter, Koch soldiered on. Within a week, he was gripping and throwing a tennis ball with his new left hand.

“What's next thing you know … he picks up a glass of water and he takes a drink,” Azari said.

“You feel fierce and powerful, you just do,” Koch said. “So when I grabbed the bottle [of water] and was able to hold it, even though it was pretty shaky, I was like, ‘I feel fierce and powerful.’”

With each new movement, each new milestone bolstered Koch’s confidence.

“Jonathan has met or in the vast majority of cases exceeded all of my expectations,” Azari said. “I told them, ‘Jonathan it's going to take you maybe a year and a half to two years before you can tie your shoelaces.’ At two months, he sends me a video of him tying his shoelaces.”

Two-and-a-half years after he fell dangerously ill, Koch got to do something else for the first time -- get behind the wheel of a car and drive himself again on the open road.

“I’ve felt the breeze before, but right now it feels electrified, like it’s humming on the inside,” he said, with his hand out the window. “So I think that means that nerves are growing back on the inside.”

Driving seemed to liberate him, Gunkel said, and gave him the confidence to work on others tasks. Only recently, Koch said he has regained a sense of temperature, differentiating between hot and cold in his new hand.

“It was 100 percent worth it,” Koch said, referring to the transplant surgery. “You can’t imagine the change in my life as I regain my independence.”

But the biggest prize for him is getting back on the tennis court -- a long time passion of his. Born right-handed, Koch now swings a racquet with his newly acquired left hand.

“There's nothing more than I like to do than to go play as hard as I can and as well as I can,” he said. “When it's over with, no matter what happens, it's been an incredible experience and once in a while you catch lighting in a bottle in a tennis match and it’s everything you have.”

He is still working on his recovery, and the man who many describe as a hard-charging, workaholic, whose life was road-mapped by a Hollywood movie, is looking for other stories, including his own, to inspire others.

“It's a triumph of human spirit story, not from just my standpoint but from our standpoint … and all my friends who rallied so hard,” he said. “And just the amount of love and prayers and all those things that were coming to me that I could actually feel them. Like, I felt lifted up by them. I know how many people were caring about me.”