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August 10th, 2017

Saying Goodbye to Gene’s ‘Big Dumb Kidneys’

By In the Loop

When Gene Okun was diagnosed with polycystic kidney disease, he knew he’d eventually need a kidney transplant. So he took things into his own hands by visiting transplant surgeons and centers around the country, and by creating an innovative, entertaining social media campaign to get rid of his "Big Dumb Kidneys."

Gene Okun has kidney disease, which is obviously no laughing matter. His journey to finding a living donor, however, is something he's been able to find humor in for the benefit of others.


Gene Okun's kidneys have to go. They're big. They're dumb. (His words.) And they're ruining his life. He wakes up feeling sick. He can't find a seat in a restaurant or plane because he doesn't fit. Sleeping is a challenge. He can't eat much because there's no room in his insides. "My stomach's so big that it affects me physically in everything I do," Gene tells us. It's been this way since he was diagnosed with polycystic kidney disease.

Gene is refusing to take the diagnosis lying down, however. He's taken "an active role" in monitoring his kidney function. And he's visited transplant centers around the country to determine which one would be the best fit for him when that time ultimately came. It was an exhaustive, sometimes head-spinning search. But through a series of personal recommendations and finally, a referral, Gene's search ended when he met Mayo Clinic transplant surgeon Mikel Prieto, M.D.

"He's a gentle man who's humble yet very knowledgeable, and he's been doing this for such a long time," Gene tells us of Dr. Prieto. "He sat down with me and described exactly how he'd do my procedure and then ran through some of the complications we could run into. He didn't just sit there and tell me everything was going to be great, and that was something I appreciated."

Complicating matters is the size of Gene's kidneys. While normal, healthy kidneys are usually about the size of a human fist, both of Gene's kidneys have grown larger than footballs because of the disease. And he tells us that's going to present a unique challenge. There's not much room to work. "They're both so large and taking up so much room around my stomach," Gene says. "It's going to be an interesting situation for Dr. Prieto, that's for sure. If nothing else, I appreciate his willingness to give it a shot."

Before that can happen, though, Gene needs to find a donor. And he's taken quite an active approach to that by launching — alongside his sister — a creative (and pretty entertaining) social media campaign and online video series called "Gene's Big Dumb Kidneys."

Gene is hoping the videos will not only shed light on what daily life is like for him and his own need for a kidney transplant, but also will increase awareness for others living with kidney disease. "We thought the whole idea of using comedy would be much better than just saying, 'Hey, Gene's really sick. Gene needs a kidney.' Because some people glaze over," Gene says. "While not making light of a serious disease," he says, they instead are "making light of the situation" Gene finds himself in "to hopefully lead viewers down a path to living donation."

You can learn more about that path, and watch Gene's "Big Dumb Kidneys" videos at bigdumbkidneys.com. Share your comments below before you use the social media tools to share this story with others.

 

Tags: Dr. Mikel Prieto, Dr. Vicente Torres, Kidney transplant, Patient Stories, Polycystic Kidney Disease

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