CHAMPAIGN – Two things Jonathan Hill's classmates might have known about him in high school: he was a varsity swimmer and an Eagle Scout.
What barely anyone knew of Hill was that he hid secrets about his health that he and his family dared not share over a closed and trusted circle.
Born with hemophilia, usually hereditary blood, Hill was 15 when he learned that he would be infected with HIV, the virus that can lead to AIDS. He got HIV from the treatment of hemophilia that was helping him to keep him alive – injections that came from human blood to replace the coagulation factor of his own blood.
Hill later learned that he had also been infected by the same source of hepatitis C – a virus that can live in the body unnoticed for a long time while slowly damaging the liver, which is exactly what he did to him.
Now, 49, a father of two married sons and director of advancement at the University of Illinois College of Engineering, Hill said that many of the hemophilia patients of his generation did not survive.
It is important for him that they are never forgotten.
"We lost a whole generation of patients with hemophilia and only a few of us left," he said.
At the age of 2, Hill was diagnosed with hemophilia for the first time. His parents had taken him to the hospital after he had bitten his tongue and would not stop bleeding.
At that time, children with hemophilia did not have to survive much in adulthood. But his parents wanted him to have a normal childhood and encouraged him to pursue his interests, Hill said.
"They did not want me to feel that I had limits," he said.
People with hemophilia have a missing or defective coagulation factor in their blood, which makes them bleed longer than others do – not just injuries that can be seen. Internal bleeding in the joints or muscles is also a risk with the disease.
Hill started the injections of a coagulation factor treatment commonly called "factor" from the age of 2 years.
When it was discovered that HIV could be transmitted through the use of blood and blood products, and donor blood security measures were implemented, it was too late to protect Hill and many others with the help of blood. ;haemophilia.
About half of people with hemophilia in the United States have been infected by HIV through contaminated blood products since the late 1970s in the mid-1980s, and many have developed AIDS. and they died, according to the National Hemophilia Foundation.
At the time when Hill discovered she had HIV in the early 80s, little was known about the virus, and the infected people were often feared and avoided. Hill obtained one of the first treatments available for HIV, but her parents decided not to share her HIV status with her schools on the advice of her medical assistance team.
Also, they did not report to school officials about his hemophilia.
"They just did not want the school to treat me differently," he said.
Hill was in and out of the hospital a lot – mainly because of his blood disease. He missed a lot of school and could not tell his teachers why. And since she was unable to share her HIV status with the girls at that time, she also decided to refrain from attending appointments.
The only ones to whom Hill has confided about his medical conditions were his closest friends 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 that you dream of," he recalled.
College and marriage
Hill said his father encouraged him to go to college. He earned a bachelor's degree in his then state of California and a master's degree in religious studies from the University of Boston and began working in the field of higher education.
Hill's wife, Rebecca, had gone to the same high school she had done and the two reunited after college through their friends, she said.
For a while, life was fine, Hill said. He and his wife had started a family, and was recruited to come to work for the IU in 2005.
Then, during a business trip in 2008, he had an episode of mass bleeding related to his liver disease, which, at that time, he had learned, had advanced. He was listed on a liver transplant, but it would have been nearly a decade before his health deteriorated to the point where he was transferred to the top of the list, he said.
In recent years, his health has deteriorated to the point that he has moved from work to disability.
In total, Hill received four calls on the potential availability of a liver donor – and each time, he grabbed a suitcase that he kept packed and headed straight to the Northwestern Memorial Hospital in Chicago.
When he received the number four call, which led to a vital liver for him in October 2017, he became skeptical that this trip would be more successful than the last three, he said. His wife stayed back that day for parent-teacher conferences, and a friend took him to Chicago.
Back to work
It takes more than a year for Hill to recover from the transplant, solve complications and rebuild her strength. He returned to work at the IU after three and a half years only a few weeks ago.
His rollercoaster health conditions paid tribute to his wife and their two teenage sons, he said.
"We tried to create the feeling that it was normal," he recalled.
Hill currently walks with the help of a stick due to a previous joint damage related to hemophilia, and will be on transplanting anti-rejection drugs and anti-HIV drugs for life, he said. But since blood clotting factors are produced in the liver and now has a healthy liver, it is free of hemophilia for the first time.
Hill said he learned early to defend his medical care and to consider his care as a teamwork with himself leading the team. Encourage other patients to do the same.
"This is one of the reasons why I'm still here," he said.
Hill's longtime physician, Carle Dr. Timothy Meneely, said Hill is progressing well after transplantation, "and most of this is due to him."
People with complex medical conditions have so much to handle that they practically become a full-time job, Meneely said.
"People with these challenges have a lot on their plates, and the real ones with success are those that can defend themselves," he said.
Were there dark days for Hill when he felt angry, sad and discouraged by his deteriorated health?
Yes, he has all this.
"It's a process of mourning," he said.
It would be easy for him to feel angry even now – even if he is not, he said – because he and others born with hemophilia should not be infected by HIV and hepatitis C had more severe blood security measures arrive first.
Because of safer blood products, there have been no transmissions of HIV through factor-based products in the United States since 1987, according to the National Hemophilia Foundation.
"There's a lesson to be learned there on public safety, on blood safety, this is very important," said Hill.
From his liver transplant, it was like opening a new door in his life, he said. He does not see the time to spend more time with his wife and children, but he is still working on what else will mean for him this new future.
What he knows, Hill said, is that he feels responsible for getting the most out of it, not just for himself.
"I want to live with a purpose and honor those we have lost," he said.
Obesity that causes increase in the need for liver transplants
There is a long list of waiting for liver transplants, and what is increasing the need may surprise you.
The dott. Haripriya Maddur, a specialist in hepatology at Northwestern Medicine, said doctors are seeing a growing number of people with non-alcoholic liver disease, a condition linked to obesity and obesity-related diseases.
"It is expected to become the number one reason for a (liver) transplant," he said.
As of this week, more than 13,000 people in the United States were waiting for a liver transplant, according to the United Network for Organ Sharing.
Maddur, who makes pre-transplant consultations for patients with a diseased liver at a Northwestern satellite clinic in Carle once a month, said patients must become extremely sick to move to the top of the list of liver transplants . There are simply not enough livers donated to go around.
Northwestern makes about 100 liver transplants annually, he said.
According to the American Red Cross, donated blood is now being tested for the following infectious disease markers:
➜ Hepatitis B
➜ Hepatitis C
Zi Zika virus
➜ West Nile virus
➜ Human T-linfotropic virus
➜ Trypanosoma cruzi