Hollywood Exec's Near-Death Story Tells Power of Resilience

Marcia Frellick

October 21, 2018


Jonathan Koch, president and chief content officer of Asylum Entertainment. (Photos: Darbe Rotach, Medscape)


CHICAGO — Hollywood film and TV executive Jonathan Koch says his unlikely survival after he developed a rare disease took a combination of hard-won resilience, his belief in his doctors, and their belief in him.

Koch, president and chief content officer of Asylum Entertainment, told his story Saturday — on his birthday — in the opening lecture of the American College of Rheumatology (ACR) 2018 Annual Meeting.

In January 2015, Koch, whose production credits include the Emmy Award-winning TV miniseries The Kennedys, went from peak physical condition, he said, to having a 10% chance to live a mere 48 hours later.

For weeks his fingernails had been growing so rapidly he had to cut them every day. It didn't become clear that something was seriously wrong until he was pitching an idea to a group of executives at a producers' conference in Washington, DC, later that month. His vision started to blur so much that he saw three of one person and started pitching to the image in the middle. He left the meeting, got in cab and headed to the nearest hospital.

He ended up in the intensive care unit (ICU) at George Washington Hospital, where he was put into a medically induced coma for 3 weeks with a diagnosis of acute hemophagocytic lymphohistiocytosis.

He said a doctor told him, "You're probably going to die tonight."

Acute Hemophagocytic Lymphohistiocytosis

Koch speaking to rheumatologists about the fight in him and patients like him.

The rare disease, which is a syndrome of excessive immune activation, turned his hands and feet black with severe necrosis and caused him to lose 50 pounds. He has since undergone a hand transplant on his left hand, had the fingers on his right hand amputated, and has a prosthetic leg.

He described the pain he endured before his hand transplant in a video made of his journey: "It feels like somebody's holding a Bic lighter underneath my fingertips all day, every day," he said in a whispery voice.

But his story is less about the physical than about the power of the spirit - his own, his family's, and his care team.

Rheumatologist Victoria Shanmugam, MD, chair of this year's ACR conference, met Koch the night he entered the George Washington ICU.

Koch explained that during his stay he learned that there are two kinds of medical professionals: a "want to" and a "have to."

Shanmugam was definitely in the want-to camp, he said; she is driven to go above and beyond for patients.

He described his amazement that once, after a long shift, she made it to the parking garage but returned to the hospital because she wanted to rewrap his hands and feet.

So he decided that "the least I could do for her and for everybody who has helped me over this period of time is to fight as hard as I could."

Jonathan Koch with his physician Victoria Shanmugam.

The fight in him and in other patients is something he wanted the gathering of physicians to know and understand.

"I'm here to share with you that the people you are treating, the people who count on you - there's more in them than you know. There is more capacity for them to fight by your side, to feel part of the process," he explained.

I'm here to share with you that the people you are treating, the people who count on you — there's more in them than you know.

There is an initial orientation toward goals when physicians begin to treat a patient like him, Koch told Medscape Medical News.

"That's not my orientation," he said. "Mine is toward purpose. Patients want to know what to do right now, right here, and not how they're going to feel 3 months from now."

"My doctors were very coach-like," he said. "They invested themselves in what motivates me and what gets me going," he explained. "I did the same for them. Every time a doctor came into my room, I would sit up, greet them and smile and do my best to let them know we were in this together and I had no less expectations of myself than I did of them."

Koch had an effect on his physicians as well. Shanmugam said that he changed her way of thinking.

"Now I don't assume anything until I know what my patients are capable of," she told Medscape Medical News. "He made all of us part of his team and we all felt vested in salvaging what function we could with his hands and getting him through."

Koch often takes his inspiration from others. Since January 28, 1986, when the Space Shuttle Challenger exploded, he has done seven push-ups every day that he has been able to for the seven astronauts who were killed.

Now I don't assume anything until I know what my patients are capable of.

The day the doctor at George Washington told him he was dying, he had only to think about his daughter, Ariana, who was 15 in 2015, and Jennifer, his girlfriend at the time, and "I committed myself to not dying that day."

"The ability to fight for people who you love or care about is so much more powerful than if you just fight for yourself. I've always known that. It's so easy if you're just fighting for yourself to give yourself permission to give up. I wanted none of that," he said.

And his family returned the commitment. Shanmugam said Koch's family support was among the strongest she has ever seen.

Koch urged physicians to see beyond the body and look for the might of the mind and harness that in a partnership of care.

"For those of us who have been struck down and those who have dedicated your lives to helping us, there's more there," he said. "There's a way in which you can relate to your patients and that your patients can relate to you that says you're partners in this."

American College of Rheumatology (ACR) 2018 Annual Meeting. Presented October 20, 2018.

Follow Medscape Rheumatology on Twitter @MedscapeRheum and Marcia Frellick @mfrellick


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