n the videos, two burly guys in red bodysuits are uncomfortably close to Gene Okun. They eat food off his plate, snuggle up with him in bed, and accompany Okun on a date, even hugging his companion as the date ends. And the whole time, the guys in red are loudly laughing and arguing.
In actual life, those actual kidneys — which Okun has nicknamed Big and Dumb — do cause him a lot of trouble. Okun, 53, has polycystic kidney disease, or PKD, which has caused his midsection to grow large and rounded, as if he were pregnant.
He found out he had the condition in his 30s, and went on the transplant list. But he wasn’t content to just sit back and wait.
“If I put myself on the list [for a kidney transplant] and just wait, that’s not proactive,” Okun said. “You get on the list and then do nothing, you might get a kidney and you might not get a kidney. And it’s [a wait of] anywhere from five to nine years.”
Currently, there are 96,000 people on the national transplant waiting list waiting for a kidney.
So he created “Gene’s Big Dumb Kidneys,” a website featuring videos, educational articles about transplants, and photos of Okun — all in the hopes of finding a kidney donor.
Launching a donor campaign
Last year, Okun, who lives in Newport Beach, Calif., learned that his condition had worsened to the point that he would need a transplant. So, in October 2016, Okun, his sister Tina Okun Smith, and three of her colleagues began exchanging emails and phone calls brainstorming ideas of how to create a campaign to find Okun a donor.
Such campaigns, as it happens, are Smith’s main line of work. She handles operations for SmithSolve, a health care communications company she owns with her husband.
This, though, would be a task much closer to home. The group bandied about possibilities — maybe they would make a “world’s largest kidneys” award and give it to Gene. “Maybe we would have the Guinness Book [of World Records], or make a parody along those lines,” Okun said.
The creative team nixed that idea, however. Among other issues, it didn’t easily lend itself to video.
Then a video producer on the team suggested turning Gene’s kidneys into characters.
“When they came up with the idea for the guys in red suits, I thought ‘Oh, no,'” recalled Smith. “This is my brother, you know? It’s so serious for me. I’ve seen it in my family, because my father had [PKD] too.”
But Gene liked the idea.
“I didn’t want to be another sad story,” Okun said. “People sort of gloss over those, especially on social media. Humor gets people to look at things and pass them on. Humor gets more viewers.”
And, his sister admitted, the humorous approach fit better with her brother’s personality.
“My son once asked him, ‘What’s in there? It’s so hard.’ And Gene said something funny, like footballs or rocks or something,” Smith said. “And that’s how he is with everything.”
“I didn’t want to be another sad story. … Humor gets people to look at things and pass them on. Humor gets more viewers.”
When the kidneys-as-characters idea began taking shape in earnest, the siblings, along with a videographer, a web designer, and writers met to discuss storyboards, dialogue, and social media.
And in April 2017, “Gene’s Big Dumb Kidneys” launched. The eight videos featuring Big and Dumb have garnered 4,400 views so far. The series also has a small but growing following on social media, which features the videos as well as stories about transplants.
‘It’s like I have a pair of twins in there’
The videos are meant to show the ways that Okun’s kidneys interfere with his everyday life. Sitting, moving, or lying down has become extremely difficult, along with driving and eating. Despite the humor presented in the videos, Okun finds the condition frustrating.
“It’s like I have a pair of twins in there,” he said. “Sometimes I’ll eat food and it will come right back up, because there’s not a lot of room in there. I can’t sit in a booth in a restaurant. I don’t sleep great. If I lay on my side, my kidneys start to ache. I wake up on my back.”
PKD is a genetically inherited disease in which clusters of cysts develop within the kidneys. As the cysts grow in size and number, the kidneys get larger, damaging the organs’ tissues and causing chronic kidney disease. Nationally, about 600,000 people have PKD.
“It’s a relatively common problem,” said Dr. Mikel Prieto, Okun’s kidney transplant surgeon at the Mayo Clinic. “When there’s kidney failure, this is usually the reason.”
Okun found out he had the condition 20 years ago. Since then, his kidneys have slowly grown to their current size. They crowd his other internal organs and make the former bodybuilder’s abdomen visibly larger. Without a transplant, his condition will further deteriorate, ultimately requiring kidney dialysis.
“I’m not on dialysis yet, but that’s why I’m in a hurry,” he said. A transplant would effectively eliminate the condition. He gets annoyed at the suggestion that he simply go on dialysis.
“Dialysis is a lifesaving measure but not a cure,” he said, pointing out his late father’s struggle with PKD and life with dialysis.
“My father was good about his dialysis, but he always looked so tired, so drained,” he said. “Dad would come home tired and he didn’t go to work that day.
“Some people can’t even work,” added Okun, a solar energy consultant. “You spend the rest of your life on dialysis, and it’s not a good quality of life. You’ve got a grind of three to four hours, three to four days a week. It affects your whole lifestyle.”
Focusing on the positive
Okun has not yet found a donor, in part because his blood type, O-, is particularly hard to match. But the campaign has had some success since it began in April, he said.
“People who didn’t match up with me still became donors,” he said. “So there are other people who are going to get transplants now.”
Along with matching blood types, getting donor organs to those with PKD can take longer because they are usually not yet on dialysis. Accumulated time on dialysis is one means by which the Kidney Allocation System ranks people who need kidneys. Another factor is that those with PKD have better outcomes with living donors than with deceased ones.
In addition to finding himself a donor, Okun also wants to challenge the assumption that people with kidney disease should just go on dialysis without exploring the transplant option.
“There’s no emphasis on trying to find a donor,” he said. “It’s just, you have this disease and it’s like, ‘OK, here you go, off to dialysis.'”
Prieto, Okun’s transplant surgeon, is impressed by the campaign. “I’ve seen one or two of his videos,” he said. “It’s nice the way he approaches his precarious condition with humor.”
In looking at the impact his condition has had on his own life, Okun is wistful.
“I don’t like to focus on the negative,” he said. “I am lucky. I have my resources and my sister’s resources and help from good people. If I wasn’t so physically fit earlier in my life, I don’t think I would be able to handle this physically. I still ride my bike and exercise.”
Nonetheless, PKD has cost him.
“I can’t lift the weights I used to, and some [exercise] machines I can’t fit into,” he added. “Bodybuilding is a sport of how you look, and I look like this now. I’ve had to swallow my pride and change my outlook.”
And, he said, he decided not to have children because of the high likelihood his offspring would have the disease.
“But I’m on a different path now,” he said. “Of course I want to be well myself. But my journey is about helping people learn about this. And I’m glad that I can do that.”
And Smith’s team may keep the campaign going, even after Okun finds a transplant.
“Once Gene gets a donor, we’re having a going away party for Big and Dumb,” Smith said. “But we may use them for somebody else.”