IOWA CITY — With his wife’s life hanging on the precision of a surgeon’s blade and the luck of a stranger’s liver, Ed Brown on Nov. 7, 2016, sat alone in a University of Iowa Hospitals and Clinics waiting room.
Except he wasn’t actually alone.
In addition to the swirling memories of emergency room visits, near-death experiences, helpless nights and roller-coaster days that blurred his years and now crowded his mind were teenagers on their iPhones, giggling, exchanging banter.
There was a family that had been in a car crash, with some streaming through the waiting room with bloodied clothes. And yet another who had lost a loved one to a heart attack.
“All those distractions came into my world,” said Brown, who coped by praying and walking. “I got very upset with being in the general population.”
And so when his beloved wife emerged from her 11-hour surgery with a perfectly functioning liver and a new lease on life, a lounge specifically for organ transplant patients and families seemed the best way the couple could give back.
“We felt we wanted to say ‘thank you,’ and we took cookies to every department we were in, but that wasn’t doing it,” Brown told The Gazette. “We took chocolates to all the nurses and got the biggest hugs in the world. But this was our calling.”
Having been through office after office and a variety of waiting rooms over the years, Brown said he and his wife, Deb, had seen plenty of posters of organ recipients playing sports, feeling young again.
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“I saw all those posters and I thought, ‘I want to be on a poster,’” he said. “We are wanting to be poster children.”
Today they are — in a virtual sense — having launched an online campaign in coordination with the UI Center for Advancement to raise $10,000 in support of organ transplant patients.
Titled the “Dragonfly Transplant Fund,” in that the dragonfly symbolizes change, the couple’s hope is to finance a dedicated lounge for families seeking refuge and camaraderie with others in similar situations.
They’d like to see enhanced educational materials on site, perhaps in the form of a computer with easy-to-search answers for frequently asked donor questions. They want to help finance travel expenses and other accommodations for transplant families coming from afar.
And then there’s the awareness aspect.
“There are still 20 people a day dying in the United States waiting for a transplant,” Ed Brown said, citing one of several statistics on the couple’s fundraising page, including that another person is added to the national organ transplant waiting list every 10 minutes, yet only 54 percent of U.S. adults are registered donors.
Deb Brown, 68, said she was up baking oatmeal cookies in her kitchen a week after transplant — having spent just five days in the hospital after surgery — and gratitude drove her.
“We definitely want to give back in some way,” she said.
Brown hasn’t received much information about her liver donor, as donor families get to choose whether to have contact. All she knows is the liver was 33 years younger.
She did write a letter, although she hasn’t received a response.
“It was a very difficult letter to write,” Brown said. “I’m sorry you experienced what you did. This is me, and what I do. I’m married, and my husband has two children, and once again we can travel to see them in different parts of the country.”
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Her grandchildren are in New Mexico, and the couple has visited them post-transplant. That hadn’t been possible years earlier, when her liver was beginning to fail. With ammonia building up in her abdomen and chest cavity, Brown couldn’t eat. She couldn’t sleep. She struggled to breathe, and became like a zombie before the times her husband rushed her to the hospital.
She coded twice, yanking her off the liver transplant list because she was too sick. But she was placed back on a short time later, and the weekend before the 2016 presidential election, the couple received a call.
Brown was the alternate to a liver transplant, in case the intended recipient wasn’t a good match. But it was, and the Browns left without seeing a surgeon.
“That’s a long drive home, by the way,” Ed Brown said.
The next day, though, the couple was called back — and this time they were first in line. Ed Brown said the doctor updated him hourly during the surgery.
“They called and said, ‘We have harvested the liver.’ And then they called back and said they had taken Deb’s liver out, and they were in the process of attaching the new liver,” Ed Brown said. “Then he said, ‘It’s a good liver.’ And then, ‘We are still hooking up things, and she’s on life support.’”
Finally he received word: “We are taking her off life support to see what happens.”
“That went on until 11 p.m.,” Brown said. “The UI had my complete trust. If she was going to die, she would die.”
But she didn’t. And the Browns have committed to spend the rest of their lives spreading the word about why.
“There are so many causes out there,” Ed Brown said. “But this one is special to us.”
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