Gene Okun is a 52-year-old former body builder, current solar farm developer, lives in Newport Beach and has a kidney disease that causes his kidneys to weigh 10 pounds....each.
Gene has polycystic kidney disease, which causes numerous cysts to grow inside the kidneys.
These cysts are filled with fluid and if they grow to be too large kidneys can become so damaged it leads to failure.
Beyond damaging the kidneys, PKD can also leave cysts in the liver, pancreas, spleen, ovaries, and large bowel and also affect the brain or heart.
While there is no cure for PKD, one of the ways to treat it is through kidney donation.
The United Network for Organ Sharing says there are 97,257 people waiting for a kidney and Gene's doctors say his wait time could be anywhere from three to nine years.
They said his only hope for a donation sooner is to seek out his own donor.
Gene took charge and decided to use humor to find his live donor.
His sister Tina Smith, alongside her husband launched bigdumbkidneys.com featuring videos with Gene and his big dumb kidneys as he lives his life with his disease.
“It’s an upbeat way to share a very serious story, not just that I have, but that many people have. On social media, there’s so much there that people gloss over. Are you going to open up something sad? But if it’s funny, you’re more likely to take that and share.”
Since the site launched, some people have expressed interest in giving a kidney however he hasn't had much success.
Gene spoke to Wake Up Call this morning about his disease and how you can help him and others in need of kidney transplants.