Joel Beeson has always tried to keep his personal life private.
But the 57-year-old professor at the West Virginia University Perley Isaac Reed School of Journalism and his close family and friends made a bold decision a few weeks ago. They created a social media campaign to help him find a liver.
The LIVEr4Joel Facebook page has almost 150 "likes" with supportive comments from friends, information about liver transplants and updates on the wall. There is also a LIVEr4Joel page on Twitter.
A Facebook post on March 7 said, "In the past week, our page has received 108 New Likes, 91 people are Talking About LIVEr4Joel and we have reached 1,941 people. The response has been amazing, but we are not there yet. Please continue to share this with friends (online and offline), and think of ways to get Joel's story out there."
Beeson suffers from a genetic bleeding disorder called Von Willebrand disease, a type of hemophilia that prevents blood from clotting as it normally should. But in 2003 or 2004, after a stint in the hospital, Beeson was also diagnosed with cirrhosis, the final stage of liver disease. He has been on the transplant list since 2007.
His brother, who is 58 and a triathlete, was going to donate his liver to Beeson, but doctors said he was too old. He is now looking for a donor in good health, under the age of 55, blood type O and about 5 feet 11 inches and 185 pounds or heavier. The procedure requires at least an 8-week recovery time.
"I've had a disability all my life, and I keep it pretty private unless there's some reason. People misinterpret it," he said. "We made the decision based on the fact that over the past year, I've had a couple of infections that could have been fatal sometimes. I can't get the bleeding to stop with one blood factor like I used to. If I get sicker, they won't do it."
Beeson's MELD score, or the Model for End-Stage Liver Disease system, which prioritizes patients waiting for a transplant, bounces from 14 to 15 now. His doctor said that score makes him an ideal candidate. The range is from six, which means less ill, to 40, gravely ill.
But the score doesn't take Beeson's other illnesses into account.
His wife, Dana Coester, 48, who is also a professor at the School of Journalism, said they also created the campaign to raise awareness.
Six potential donors have responded so far. Two are strangers, Coester said. Their university insurance, which has been pushed to the maximum because of the amount of Beeson's health problems, will cover five preliminary tests for donors.
They have four sons and a daughter. Beeson and Coester have been together since 1989 and were married in 1993.
They remain positive, despite the complications they face each day.
In 2007, Coester found Beeson unconscious on the floor of their bathroom. He had been throwing up blood. A varicose vain in his throat had ruptured.
"It's 80 percent fatal," she said. "I knew we didn't have a lot of time to save him, and I didn't know if he would make it."
Doctors didn't think he would make it.
"How would I take care of our family? We have four boys; they need a dad," Coester said, tearing up at the memory.
"In some ways, the year after that happened is one of the best years of our lives because we came so close to the end, it just crystallizes everything. It's a blessing, and that's true because it distills what matters and things that are normally petty concerns.
"It makes us better parents, better humans," she said.
They try to be honest with their children about Beeson's health issues, but they don't want to scare them.
"They ask me, 'Daddy, are you going to die?' I say, 'Eventually everyone dies, but I'm not going to die right away,'" Beeson said. "It makes me feel like holding them and just saying from my spiritual beliefs that I'll always be with them, because my and Dana's values and sense of right and wrong is going to be with them.
"And the love I give them hopefully will pass through into the work and I have to let them know that, not to be afraid of that, because it really isn't just about me and my physical body."