He sent a quick text to his then-girlfriend (now wife) of seven years, Jennifer Gunkel, but he made the conscious decision not to text his 15-year-old daughter, Ariana. He decided he couldn’t die because “she shouldn’t grow up without her daddy.” He said texting her would have been a decision made for him, not her.
“Fight for others,” he said, “not yourself.”
He recalled a time when Ariana was about 5-years-old when she was upset about something, and saying she “just can’t do it anymore.”
He found a stethoscope and let her listen to his heartbeat. He told her, “I never have to give up. I was born with the heart of a champion.” He then put the stethoscope on her chest and told her she was also born with the heart of a champion.
That attitude is what carried Mr. Koch through the next weeks and months. The puzzling and rare diagnosis: hemophagocytic lymphohistiocytosis.
While Mr. Koch’s initial therapy saved his life, he awoke from a medically induced coma with severe necrosis in his extremities. He required amputation of his hand and foot. In this presentation, he described the physical and emotional trauma he endured and shared his experiences in working with his healthcare team to restore his independence—including a hand transplant—and mobility so he could return to his career, dance with his daughter and even play tennis.
Ms. Gunkel was his true patient advocate, sitting by his bedside with a notepad and researching options, such as a hand transplant. His transplant surgeon told him, you have to be able to walk before we’ll even consider talking to you about a hand transplant. That served as the impetus for Mr. Koch to redouble his rehabilitation efforts. He walked into that surgeon’s office a few months later and said, “What’s next?”
Mr. Koch’s story illuminates the patient’s perspective on care, the pain and grief associated with illness, and the power of resilience to fuel recovery and restored independence. He knows the power of seeing failure and pivoting to success.
“It’s amazing to be here,” Mr. Koch said. “It’s amazing to be anywhere.”
Those in attendance at the opening session felt the same after listening to Mr. Koch. We were all happy to be there. Check out the trailer for a video of his story below:
Looking Forward
The Annual Meeting is sure to have a lot of moments like this in the coming days, along with exceptional education, networking opportunities and so much more. We hope you’re here in Chicago with us, but if not, stay tuned to our website for more updates from the Annual Meeting.