UI employee survived dark days before blood-supply safety

UI employee survived dark days before blood-supply safety

CHAMPAIGN — Two things Jonathan Hill's classmates may have known about him in high school: He was a varsity swimmer and an Eagle Scout.

What hardly anyone knew about Hill back then was he was harboring secrets about his health that he and his family didn't dare share beyond a close, entrusted circle.

Born with the usually inherited blood disease hemophilia, Hill was 15 when he learned he'd become infected with HIV, the virus that can lead to AIDS. He got HIV from the hemophilia treatment that was helping keep him alive — injections that were derived from human blood to replace the clotting factor his own blood lacked.

Hill later learned he'd also been infected through the same source with hepatitis C — a virus that can live in the body undetected for a long time as it slowly ravages the liver, which is exactly what it did to him.

Now a 49-year-old married father of two and director of advancement at the University of Illinois College of Engineering, Hill said many of the hemophilia patients of his generation didn't survive.

It's important to him that they're never forgotten.

"We lost a whole generation of hemophilia patients, and there only a few of us left," he said.


Dim prognosis

Hill was first diagnosed with hemophilia when he was 2. His parents had taken him to the hospital after he bit his tongue, and it wouldn't stop bleeding.

At the time, kids with hemophilia weren't expected to survive much into adulthood. But his parents wanted him to have a normal childhood, and they encouraged him to pursue his interests, Hill said.

"They didn't want me to feel I had limits," he said.

People with hemophilia have a missing or defective clotting factor in their blood, which causes them to bleed longer than other people do — and not just from injuries that can be seen. Internal bleeding into joints or muscles is also a risk with the disease.

Hill began injections of a clotting factor treatment commonly referred to as "factor" starting at age 2.

By the time it was discovered that HIV could be transmitted through the use of blood and blood products and better donor-blood safety measures were implemented, it was too late to protect Hill and many others with hemophilia from becoming infected.

About half of people with hemophilia in the U.S. became infected with HIV through contaminated blood products from the late 1970s to mid-1980s, and many developed AIDS and died, according to National Hemophilia Foundation.

At the time Hill found out he had HIV, in the early 1980s, little was known about the virus, and infected people were often feared and shunned. Hill got one of the early treatments available for HIV, but his parents decided against sharing his HIV-positive status with his schools on the advice of his medical care team.

They also didn't tell school officials about his hemophilia.

"They just didn't want the school to treat me any differently," he said.

Hill was in and out of the hospital a lot — mostly due to his blood disease. He missed a lot of school and couldn't tell his teachers why. And because he was unable to share his HIV-positive status with girls at that time, he also decided to refrain from dating.

The only ones Hill confided in about his medical condition were his close buddies with whom he played Dungeons and Dragons, the fantasy role-playing game that was an escape for him.

"D&D was a way to explore and be active, do things you dream about," he recalled.


College and marriage

Hill said his dad encouraged him to go to college. He got an undergraduate degree in his then-home state of California and a master's degree in religious studies from Boston University and went to work in the higher education field.

Hill's wife, Rebecca, had gone to the same high school he did and the two reconnected after college through their friends, he said.

For a time, life was going well, Hill said. He and his wife had started a family, and he was recruited to come work for the UI in 2005.

Then, on a business trip in 2008, he had a massive bleeding episode related to his liver disease, which, he learned at that time, had become advanced. He was placed on a list for a liver transplant, but it would be nearly a decade before his health deteriorated to the point that he was moved to the head of the list, he said.

In recent years, his health worsened to the point that he transitioned from working to disability.

In all, Hill got four calls about the potential availability of a liver donor — and each time, he grabbed a suitcase he kept packed and headed straight to Chicago's Northwestern Memorial Hospital.

By the time he got call number four, which did result in a viable liver for him in October 2017, he'd become skeptical that this trip would be any more successful than the last three, he said. His wife stayed behind that day for parent-teacher conferences, and a friend drove him to Chicago.


Back to work

It's taken more than a year for Hill to recover from the transplant, get through complications and rebuild his strength. He returned to work at the UI after three-and-a-half years away just weeks ago.

His roller-coaster health condition took a toll on his wife and their two teenage sons, he said.

"We tried to create a sense that this was our normal," he recalled.

Hill currently walks with the help of a cane due to earlier hemophilia-related joint damage, and he'll be on transplant anti-rejection drugs and HIV drugs for life, he said. But, because blood coagulation factors are produced in the liver and he now has a healthy liver, he's hemophilia-free for the first time ever.

Hill said he learned early on to advocate for his own medical care and to regard his care as a team effort with himself leading the team. He encourages other patients to do likewise.

"That's one of the reasons I'm still here," he said.

Hill's longtime physician, Carle Dr. Timothy Meneely, said Hill is coming along well post-transplant, "and most of that is due to him."

People with complex medical conditions have so much to manage that it pretty much becomes a full-time job, Meneely said.

"Folks with these challenges have a lot on their plates, and the real successful ones are those who can stand up for themselves," he said.


Grieving process

Were there once dark days for Hill, when he felt angry, sad and discouraged about his deteriorated health?

Yes, he went through all of that.

"It's a grieving process," he said.

It would be easy for him to feel angry even now — though he's not, he said — because he and others born with hemophilia didn't have to become infected with HIV and hepatitis C had more stringent blood-safety measures come along sooner.

Because of safer blood products, there hasn't been any transmissions of HIV through factor products in the U.S. since 1987, according to the National Hemophilia Foundation.

"There's a lesson to be learned there about public safety, about blood safety, that's very important," Hill said.

Since his liver transplant, it's been like a new door in his life has opened, he said. He's looking forward to more time with his wife and kids, but still working through what else this new future will mean for him.

What he does know, Hill said, is he feels a responsibility to make the most of it, and not just for himself.

"I want to live with a purpose, and honor those we lost," he said.


Obesity causing rise in need for liver transplants

There’s a long waiting list for liver transplants, and what’s driving up the need may surprise you.

Dr. Haripriya Maddur, a hepatology specialist with Northwestern Medicine, said doctors are seeing increasing numbers of people with non-alcoholic fatty liver disease, a condition linked to obesity and obesity-related diseases.

“It’s projected to become the number one reason for a (liver) transplant,” she said.

As of this past week, more than 13,000 people in the U.S. were waiting for a liver transplant, according to the United Network for Organ Sharing.

Maddur, who does pre-transplant consultations for diseased liver patients at a Northwestern satellite clinic at Carle once a month, said patients must become extremely sick to move to the top of the liver transplant list. There simply aren’t enough donated livers to go around.

Northwestern does about 100 liver transplants a year, she said.

Safer blood

According to the American Red Cross, donated blood is now tested for the following infectious disease markers:

➜ Hepatitis B

➜ Hepatitis C


➜ Zika virus

➜ West Nile virus

➜ Syphilis

➜ Human T-lymphotropic virus

➜ Trypanosoma cruzi

➜ Babesiosis