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Jon Lane’s small frame hides among the tubes and machines enveloping his bed in the intensive care unit of the University of Kansas Medical Center. A large tube protrudes from his mouth beneath an oxygen mask. A quarter-filled catheter bag hangs at the end of the bed. He can’t hear because of fluid build-up in his ears and can’t speak because of tubes supplying his body with oxygen. His blood is filtered every few hours to keep his kidneys from failing. If he could still talk, he would tell you that the autoimmune disease that has ravaged his liver will kill him soon. That is, unless he gets a liver transplant.

On the YouTube video he posted a month before the presidential election, Jon talks about how electing Barack Obama could save him and others doomed by preexisting conditions by requiring heath insurance for everyone. In that grainy 10-minute video, he lifts up his shirt to show the red bruise over his enlarged and failing liver. Two months later, 40 days before Obama’s inauguration, Jon lies, gravely ill, in a Kansas City hospital.

How he went from a state champion high school debater and straight-A student to fighting for his life includes two medical calamities. One is a rare disease that is killing his liver, the other involves a stress ball, Doritos and Jon’s tendency to walk in his sleep. Add the medical bills that only continue to grow, and one can see why Jon, a Tonganoxie freshman with a quirky sense of humor and a head of curly brown hair, concluded that his fate rested in the hands of a future president and a promise to change the health care system.

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Jon Lane

His freshman year of high school, Jon joined the debate team. After debate practice, when Jon was researching topics at home, he would often get distracted and end up posting YouTube videos.

Almost four years later, Jon would use YouTube to plead for his life.

In high school, Steve Harrell, Tonganoxie High School debate coach, said, Jon was “one of those guys you like to hang around, and he always had a kind of off-center view of the world in an entertaining sort of way.”

Harrell said Jon was goal-oriented. “He was very driven, and he wanted to participate in as many activities as he could and that just became stronger as he went through high school.”

It was in debate that Jon met his best friend, Matt Williams. At first, Jon said he would never debate with Matt again.

“He thought I was cocky and stuck-up,” Matt said, laughing. Jon had told team members that Matt seemed like a know-it-all and that he wanted no part in being Matt’s debate partner.

However, twice-weekly debate practices forced the two to spend time together and eventually Matt became Jon’s most reliable friend — the one he would call when things started to get bad.

The first of Jon’s medical problems began the summer before his senior year of high school.

In the dead of night Jon sat up in bed. His were eyes open, but he wasn’t conscious of his surroundings. He was sleepwalking. He picked up one of two bags on his nightstand and began to eat its contents. One bag contained Doritos, the other lead pellets from a favorite stress ball that had broken and that Jon had planned to resew.

Two weeks later, Jon began to vomit blood. He checked into Lawrence Memorial Hospital.

Doctors ran lead poisoning tests and ordered a CAT scan. What it showed was literally gut-wrenching: thousands of tiny pieces of lead imbedded in Jon’s stomach and intestines. X-rays made the lead pellets look like lights on a Christmas tree.

Jon hadn’t eaten the Doritos.

“At that point it was too late to pump my stomach,” Jon said.

The tests showed lead levels in his blood 20 times the 10 micrograms that are considered dangerous.

Jon was sent to Children’s Mercy Hospital in Kansas City, Mo., where doctors inserted a nasogastric tube through his nose, down his throat and into his stomach. Only two options remained: Doctors could either cut him open and retrieve the scattered lead or he could undergo chelation treatment.

Doctors opted for chelation, which, according to WebMD, means “to grab” or “to bind,” and is a chemical process in which a synthetic solution of ethylenediaminetetra acetic acid, or EDTA, is injected into the bloodstream to attract heavy metals or minerals in the body, which are then expelled through the kidneys as urine.

It took two weeks to remove most of the lead from Jon’s body. After treatment, Jon spent most of the summer in the hospital. Matt visited frequently. The two would joke about Jon’s misfortune.

“I would say stuff like, ‘I love lead pellets, they taste like Doritos,’” Matt said. “He always knew I was kidding, and we would laugh about it.”

After the lead poisoning, Jon threw himself back into debating at the Kansas State High School Activities Association debate championship in Garden City. Tonganoxie finished first and second in two-speaker debate with Matt and Jon placing second.

Dressed in their best suits, Tonganoxie’s champions posed for photos. One shows Jon, wearing a striped tie and smiling childishly, holding up his index finger to indicate number one. He left the tournament hoping to have a good night’s sleep free of the pain in his side that had been keeping him awake lately.

But the pain in his right side refused to go away. He woke up one night vomiting repeatedly. He drove himself to KU Medical Center in Kansas City, Mo., and once again, found himself in a hospital bed.

This time the doctor pulled aside the curtains to Jon’s bed, clipboard in hand, and gave him the worst diagnosis an 18-year-old can hear.

“The enzyme levels in your liver are extremely high and your liver might fail,” the doctor said. “You have an autoimmune disease.” He explained that Jon’s body’s immune system was attacking his liver. “You will die unless you receive a new liver,” the doctor said.

Jon listened and willed himself not to cry.

Kevin Latinis, a physician specializing in allergies, clinical immunology and rheumatology at KU Medical Center, said such autoimmune diseases are poorly understood and affect less than 5 percent of the population.

Latinis described the disease as the opposite of AIDS, which is when the immune disease doesn’t function.

“Instead, it’s the immune system working too well,” he said.

“It’s a system that’s familiar with our body because it sees it every day,” he said. “The immune system needs to be smart enough to recognize cancer, bacteria or a virus. It doesn’t want to recognize as enemies the normal parts of your body that are supposed to be there.”

Latinis said that, for people with autoimmune diseases, the immune systems get confused.

“It begins attacking normal parts of the body, thinking it’s a foreign invader,” he said.

Jon’s immune system attacked his own liver.

Latinis said doctors worry about giving new livers, which are in short supply, to those with autoimmune diseases for fear the autoimmunity will simply attack the new organ.

A month later, Jon was among Tonganoxie seniors, throwing his mortar board into the air after graduation. He’d overcome the lead incident without the mental defects often associated with lead poisoning. He even scored a 33 on the ACT. He was a 4-A state champion debater and would soon enroll as a KU student.

But his liver was failing and the autoimmune disease could kill it ­— and him — before he finished a degree from the KU School of Engineering.

In August, Jon and Matt moved together to the Triangle fraternity for engineering students near Joseph R. Pearson Hall. After only a week of school, Matt received a desperate phone call from Jon.

He rushed back to Triangle and found Jon sitting on the edge of his bed.

“I think I need to go to the hospital,” Jon said, heading to the bathroom to vomit.

At the hospital, Jon checked in and was given a bag, which he immediately vomited in. They sat in the lobby in silence, waiting.

“Jon Lane?” A nurse called. Jon walked toward the nurse. Matt heard another patient in the waiting room murmur, “I’ve been sitting here forever and he gets to go back.”

Matt clutched his fists and walked out of the E.R.

Jon was given medication to reduce his nausea and was released later that night.

After that autoimmune attack, Jon moved back home to his mother’s Tonganoxie apartment and commuted to KU every day.

As Jon got worse, his expanding liver created a red bruise on the surface of his bulging skin. He regularly woke up in the night with sharp pain and had to rush to the toilet to vomit blood. One night in early October, he drove himself to the Lawrence Memorial Hospital E.R.

Doctors there told him he would need a liver transplant within the week. His liver was expanding quickly and there was nothing else they could do.

A liver transplant, if he could get one, would cost $250,000. Jon’s student health insurance through the University would pay only 55 percent; he would have to come up with $112,500.

“I couldn’t afford that, and I knew that the system needed to change,” Jon said.

Ultimately, Jon would stay alive only with a series of liver transplants, because in most cases autoimmune diseases re-attack new organs. After much debate with his health insurance company, Jon was put on a waiting list for a liver. He is still waiting.

Less than a month before Election Day, Jon knew his time was running out. To Jon, Barack Obama’s proposal to provide health care for everyone regardless of preexisting conditions offered the only way for him to get a liver transplant.

At 6 a.m., with disheveled hair and a tired look on his face, Jon recorded a video supporting Obama’s health care plan and pleading for the chance to live.

Toward the end of the video, Jon’s voice takes on a disheartened tone. He says his time is running out and that a vote for Obama will give him and others in the same position some hope.

Jon made the video because of his frustration with the health care system.

“It’s not all about me,” Jon said. “It’s more about the message that I have to bring. Quite a few people are dying because they aren’t getting the coverage that they need.”

Jon admitted himself to the hospital again on Nov. 1. He was vomiting and had blurry vision and back pain. Doctors said that Jon’s kidneys were beginning to shut down and ordered tests and dialysis, since his kidneys weren’t cleaning his blood for him.

Because he anticipated spending Election Day in the hospital, Jon asked his mother to drive to Leavenworth to pick-up his absentee ballot.

“He’s fighting for his life,” Debra Lane, Jon’s mother said in a phone message left for a Kansan reporter. “I know exactly what Jonathan wanted with the health care issues to be addressed in the United States, and I’ve always admired Jonathan for that. He’s a fantastic kid and has always been... an amazing child actually.” Other than that message, Debra has declined to talk about her son’s health.

A mustache is starting to grow on Jon’s upper lip. His hair hangs in moist clumps around his forehead and sweat beads run down his face. He’s been at KU Medical Center for nearly a month now, and he still lies helplessly as finals week looms. His ICU room curtain is closed, but he can see several pairs of feet gathering around his bed, their voices serious as they discuss his case.

Doctors have discovered the cause of Jon’s failing kidneys and think they can treat it successfully. His autoimmune disease, however, will continue attacking his liver until nothing is left. Although his illness is classified as terminal, Jon tries to live day-to-day with a determined outlook that still includes hope.

“It’s just a roll of the dice,” Jon said. “At any moment my liver could fail and I don’t really know when that day will come or even if that day will come. All I have to do is just keep fighting and I can live.”

Jon hopes to live to see Obama take office on Jan. 20 and fight to change the health care system, so he — and everyone like him — can receive care.

“My situation currently doesn’t change because of that,” Jon said about Obama’s victory. “Whatever happens, it will take a while for the health care system to change.”

It could be time he doesn’t have.

Lane's video can be seen at http://www.youtube.com/watch?v=k8Bxaa2vxaM

— — Edited by Becka Cremer

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