The right one is Big. The left one is Dumb.
They’re Gene Okun’s kidneys, and they have to go.
The 52-year-old Newport Beach resident needs a kidney transplant, preferably from a living donor. To find his match he’s turned to a whimsical social media campaign, branded as Gene’s Big Dumb Kidneys.
On his website, BigDumbKidneys.com, several short videos show him trying to eat, sleep, date and watch TV while his kidneys, personified by two actors comically bumbling about in hooded red bodysuits, get in the way. Lumpy cartoon kidneys with googly eyes are his icons.
“People on the Internet, they don’t want to always see sad stories,” Okun said. “A lot of times they may pass that over. But if somebody sees something funny, maybe they’ll share it.”
It’s a funny presentation, but a serious message.
Okun has polycystic kidney disease, which causes fluid-filled sacs to grow uncontrollably inside kidneys, eventually cutting off their blood-cleansing function. The progressive genetic disease has left Okun with 18% kidney function and sapped his energy, bringing him closer to the dialysis treatments that he doesn’t want.
A healthy kidney is about the size of a fist. Okun’s are the size of footballs.
He has what looks like a beer belly, but he actually eats lightly because his massive kidneys crowd his stomach. His protruding, taut barrel torso forces him to sleep on his back and can get clumsily wedged in restaurant booths.
The PKD Foundation says about 600,000 Americans live with polycystic kidney disease, which typically runs in families. It has no cure.
Okun knows this first hand. His watched his late father wither from the same disease; dialysis was his only option.
With dialysis, a patient is tethered to a blood-cleansing machine for several hours a day, at least three to four days a week, Okun explained. If he drops to 15% kidney function, his doctor may suggest the procedure.
It’s life-saving, he said, but not life-giving.
According to the federally managed Organ Procurement and Transplantation Network, about 85% of the roughly 22,000 Californians waiting for an organ need a kidney. Of those, about 23% — more than 4,300 — have been waiting for five years or more.
“I’m not taking anything for granted,” Okun said. “To me, the fuse is not so short that I don’t have time, but it’s short enough to where I don’t have time not to really get heavily engaged in my search.”
Until recently, Okun didn’t even have a Facebook account. Now he has a Facebook page, an Instagram profile and a YouTube channel linked to Gene’s Big Dumb Kidneys.
He’s been willing to put his personal history online to save his life and help others. If he accomplishes nothing else, he wants to educate people on the disease, highlight donors and calm some anxieties about living donation.
Even with one kidney, donors should be able to lead a normal, healthy life as before, according to the Living Kidney Donors Network.
Formerly a power-lifter and bodybuilder, the disease has put Okun in a new body. As a developer of large commercial and industrial solar farms, he’s an active businessman who travels globally, but without his previous all-day energy.
He started feeling the effects of his deteriorating kidneys in his 30s. Now, decades later, Okum feels he has a lot left to do.
“I’m glad they’ve lasted me this long,” he said with a chuckle, “but I’m really kind of over them.”