CHAMPAIGN, Ill., (WCIA) — Jonathan Hill in Champaign is lucky to be alive. He’s been fighting a blood disorder since he was born, and other complications along the way.
Now, he’s doing better and getting back to what he loves.
He’s returning to the swimming pool, reigniting his passion for swim after being on the swim team in high school. It’s something he would’ve never imagined doing after being diagnosed with hemophilia as a toddler.
“I was just trying to stay alive at that point,” Hill said.
He bit his tongue at two years old and it wouldn’t stop bleeding. That’s when he learned he had hemophilia, a genetic disorder. Unfortunately, his medical journey didn’t end there. He also had to deal with HIV/AIDS and hepatitis C. Hill said hepatitis C is what killed his liver.
He developed HIV/AIDS from the blood factor used to help treat hemophilia.
“When you’re pulling a lot of blood from a lot of different people, it was causing a whole bunch of hemophilics to get infected,” Hill added.
But today, he said the factor products are created differently to avoid that problem.
Complications also led to cirrhosis, and he had to wait 10 years for a new organ.
“I was fortunate enough in 2017 to have the opportunity to get a liver,” Hill said. “Since that day, I don’t have hemophilia anymore.”
While battling through all of it, he had support from his family and doctors. But once he was feeling better, Hill wanted to stay active and be a part of another support system.
That’s when he started to gain a passion for swimming once again. He started off swimming in the Stephens Family YMCA therapy pool.
“Then I started swimming some laps, and then I started swimming a lot more laps, and then I met the Masters team, which is adult swimming,” Hill said.
In 2022, he swam 230 miles. Next year in 2023, he’s aiming for 250 miles.
“I just feel so much better, physically, to be so active,” Hill added.
He knows this wouldn’t have been possible without Dr. Daniel Ganger at Northwestern Medicine in Chicago. They’ve known each other since the 2017 transplant.
“We hope this liver will last another 40 years or more,” Dr. Ganger said.
He knows things could be very different. If Hill didn’t get a liver, Dr. Ganger said he would not be around today.
Dr. Ganger also said he knows the entire transplant process can be difficult for patients and their families. It’s not something you can bounce back from right away.
He said some struggle with post-transplant disorder and suggests joining support groups like Hill and talking with your transplant team.