A new medical center is helping a West Fargo man in an 8-year battle with a rare liver disease. Despite a healthy lifestyle, Jordan Heley got a life-altering diagnosis at a young age.
Heley had an active childhood at his family farm in Lidgerwood. He spent much of his time helping with the harvest, running and riding motocross.
"We have a little track set up out on the place where I grew up on the farm," he said, pointing out pictures from past races.
The passion for physical activity didn't vanish. Heley later took on mixed martial arts, track, motorcycles and kayaking. Leading an active and healthy lifestyle, he never expected a life-altering diagnosis.
"The only time I'd get sick was a flu once every year," he described. "That was the only sickness I had."
Symptoms started at age 25.
"I was really yellow and thought, 'oh, it's my skin tone. No big deal,'" he said. "Finally, I had a friend twist my arm to go in."
Heley developed problems similar to what a heavy drinker goes through, but he doesn't drink. Doctors told him he has Primary Sclerosing Cholangitis, or PSC, a rare liver disease that typically shows its symptoms later in life.
"You can get anything from abdominal pain, you can have frequent diarrhea, you can have blood, there can be weight loss," his doctor, John Basset, said, explaining the effects of the disease.
Symptoms vary, and Heley said they're off and on. He often has days where he has to go to the bathroom every five minutes.
"Yeah, you're pretty much house-bound," Heley said. "I can't keep a consistent schedule, or I can't make plans."
Sometimes when his symptoms flare up, he gets itchy all over his body. At one point, wounds kept forming on his legs.
"(I had) at least one open wound on my legs for three years," he said. "I'd have to clean them, dress them, every day."
To top it off, Heley's spleen grew four times its normal size, making his once-daily activities like mixed martial arts too dangerous.
"I was like, 'oh, it's good being thrown around and punched in that area when you're not supposed to be, and can hardly touch there.' So, obviously, I had to quit that," he said. "But I'm able to ride motorcycle and stuff. That's one of my favorite things to do."
He can still ride around town, hike and kayak. His love for clearing jumps had to hit the brakes, but he hasn't given up on it.
The only cure for PSC is getting a new liver. Heley's lower on the transplant list, since he's doing well. If his liver gets close to failing, he would be a higher priority on the list.
"I hope to, I hope to," he said when asked about getting a new liver. "Because I think that's what keeps a person young, too. It's not like, 'oh, I'm getting old, I can't do this anymore.' So I would like to get back into (motocross)."
Heley said he has a great support system and a flexible welding job that lets him take weeks off work when the symptoms pick up.
His advice to other patients: press on.
"Perseverance," he said. "If I had one thing to say, it's just keep going."
Sanford Health built a new facility this year, designed to help patients like Heley. Their new Sanford Center for Digestive Health is right across from the Roger Maris Cancer Center in downtown Fargo. Staff pride themselves as being the region's largest and most experienced Gastroenterology team.
Heley said his doctor there goes out of his way to check on him and says they've helped him work through PSC.