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The Peterson family laughs, because life would be too painful otherwise.
In the past eight years, Troy, the patriarch, has endured a kidney failure, two emergency open-heart surgeries and seizures -- sometimes dozens of them a day. His medical costs have climbed upwards of $250,000, but chronic health issues have robbed him of the ability to work a steady job to support his wife and four teenage sons. He can seize without warning, and often it can take the better part of an hour before he remembers who and where he is. After the occasional severe episode, he becomes so disoriented that he lashes out violently.
Still, his wife, Teresa, and sons stand by him and call him a great dad, a hero, a miracle. Yes, there's been a learning curve, and the first time Troy suffered a "grand mal," or major seizure, it terrified all of them -- but the incidents are routine now, and handled as such. The fact that he survived when he shouldn't have has drawn the family closer together, they say, and given them an appreciation of their time together. It has also taught them that a sense of humor is the most essential survival tool.
"If you don't joke about it, you're dead," Troy said. "It's the only way you can make it through things like this."
So the kids laugh when their dad starts shaking on the floor and house guests are shocked and frightened. When they recall the time that he roared down Interstate 15 in the family car at 80 mph in a post-seizure trance, weaving in and out of traffic, they joke like it was a theme park ride. And they never dwell on sorrow or self-pity for long.
"You can't just lay there forever and be depressed," Teresa said. "You have your moments. It gets you down, but you can't stay down there."
But the Petersons' resolve is being tested anew. Teresa, too, is now facing failing kidneys. As she awaits a transplant and three times a week undergoes dialysis -- or "the vampire machines," as she calls it -- the family is grappling with the less familiar notion that not one, but both, parents are sick.
An inauspicious start
As Troy sits in the living room of his mother-in-law's Provo house, it's hard to tell he has any health problems. Of average height and build and slightly pale complexion, the 38-year-old looks like any working stiff from the office next door.
The only indication to the contrary is his voice: Every five minutes, his tone rises by several pitches for about 30 seconds as a vagus nerve simulator implanted under his collarbone sends an electric pulse to a nerve near his voice box. The seizure-fighting device gives him short coughing fits between phrases as he describes his life for the past eight years.
"There are people out there who are going through so much worse than I am," he prefaces, a nod to his kids' good health. "We are not the worst-case scenario."
The best they can tell, both Troy and Teresa's health problems started with a strep throat virus they contracted more than a decade ago. The virus passed before long, but left behind traces of biological malefactors that slowly and secretly went to work on their kidneys.
Troy came home from work one night in March 2000 and awoke his wife, saying he didn't feel well.
"He woke me up and said, 'I think I'm having a heart attack,' so I took him to the hospital," Teresa said.
Because Troy was born with a heart murmur, the couple expected that's where the problem would be. But when a doctor told them Troy's kidneys were failing, it opened a sudden and terrible chapter in their lives.
"When your spouse is sick, you realize how intense it really is," Teresa remembered, choking back tears. "It was scary. There's no other way of explaining."
Troy was told the doctors would need a piece of the kidney to diagnose the problem, so he underwent a biopsy in June. A relatively routine operation took a bad turn when the doctor nicked the main artery on the kidney, killing it instantly.
Troy was left with just one kidney, and that one was dying. A search started among his family members for a matching donor. Initially, his younger sister, Becky, volunteered, but Troy turned down the offer.
"She was going to be getting married," he said. "I just wanted to make sure she was OK. I didn't want anything to do with her."
Eventually a brother was found to be a match. Months of preparation needed to be done before the transplant could take place. But again, Troy's plans were interrupted.
'He's not superhuman'
In August 2000, Troy's heart condition caught up to him. He suffered an aortic aneurysm, in which the main blood vessel in his body ruptured near the heart, cutting the blood flow to his brain. In an emergency procedure, doctors cut into Troy's chest and stitched the vessel back together. But his brain had been deprived of oxygen long enough that a pin-sized area in the visual cortex died. That's when the seizures started.
Initially, minor "mini mal" seizures would strike as often as 30 times a day. Those last just a few minutes, but leave Troy feeling drained and sore all over. But the grand mal seizures, which he was enduring twice a week, could end in disorientation, temporary amnesia, and even violence. Troy said it's tough to describe the seizures, but they begin with a feeling like euphoria, explode into sensory overload, and end in a blind stupor as the body reacts while the brain is still "rebooting."
"Every one of your senses is going off at the same time," he said. "It was frightening."
Troy wasn't the only one the episodes scared in the beginning.
"It's a scary feeling to see your dad go through that," said Donald, 19, the Petersons' oldest son. "My dad is human. He's not superhuman like everybody thought. It's just kind of like, 'OK, where did this come from?' "
A family tragedy
Even as Troy's heart was healing and he was learning to cope with the seizures, his one living kidney was still withering inside of him. He was in a constant state of sickness, his eyes and fingertips yellowing from the toxins built up in his body. As if that wasn't enough, in November 2000, he got a call from the Utah Highway Patrol.
Becky, his younger sister who had been living with them at the time, had been killed in a car crash on I-15.
"She died so young," Troy remembered, his eyes glossing over. "She had her entire life ahead of her."
The news added tragedy to injury at a time when it seemed his life could hardly sustain any more, but there was a silver lining: As Troy's family identified the victim, a doctor turned to him and said, "Don't you need a liver or a kidney or something?"
Troy at first fought the decision. It was too hard for him to reap the benefit of his sister's death. But after discussion with other family members, he relented. He was scheduled for surgery the next day.
"I'm on the operating table while they're planning a funeral," he said. "She died and gave me life."
A few days later, he was out of the hospital and at the services, blood coursing through the badly needed kidney and cleaning out his body for the first time in months. Troy called the feeling that day "bittersweet."
"There's still a small piece of her alive in me," he said. "I'm still taking care of her."
Not out of the woods yet
"I felt immediately better after the surgery," Troy said. The color returned to his eyes and fingers and within a few days he was back to his old self, albeit with dozens of small seizures a day. But he was learning how to deal with those, too.
"You learn to live with it," he said. "It's a part of life."
Things were looking up for the family until 2002. That's when the stitches in his heart tore, rupturing his aorta again. This time, it split and dissected down to his knee. Doctors gave him a 2 percent chance of survival.
"That was just sheer dumb luck that I lived," Troy admitted.
Facing the future
In 2003, doctors implanted the nerve stimulator in Troy's chest. That has helped him control his seizures and has reduced them to a few minor ones a week and a major one every three months or so. But with Teresa now facing many of the same issues as her husband, the family is entering an unsure future.
The state will not award Troy disability benefits, so he's forced to try to work. He's accepted and lost about 10 jobs since the seizures started, mostly because his employers say he's taking too much time off. He said none will admit that their complaints are related to his seizures for fear of bringing a lawsuit. In the one case where the Petersons challenged an employer's decision in court, the court ruled in favor of the employer, Newspaper Agency Corp., because Utah is a "right-to-work" state.
"They fired him from his job because he abandoned his job," Teresa said. "He was on the operating table."
The Petersons have tried to also fight the state's decision, but have been knocked down time after time. Utah's Disability Determination Services says Troy is capable of working in two jobs: as a "silver wrapper," placing utensils in napkins for a restaurant, or as a housesitter. But, Teresa argued, Troy would have to drive to get to either of those jobs, putting him and everyone else on the road at risk. Last month, he totaled the family car driving to a job training in Salt Lake City.
"He is a danger to society, but he is out there driving," Teresa said. "He's trying to support his family, but he physically cannot do it."
For that reason, Teresa has been the primary breadwinner in the house. She works as a manager at Albertson's in American Fork, but her time is limited lately because of rising health issues. She started dialysis two weeks ago.
The kids have gotten jobs to help out too, but the mounting medical costs appear to be overwhelming. Troy's regular medications cost about $5,400 a month, so he regularly goes without.
"It's pick and choose which meds we're going to buy. Which is more important: your antirejection or your seizures?" Teresa said. "It was buy food, buy a gallon of milk, or pay for meds?"
To help, Teresa's sister, Cindy Wright, has set up a fund for the family at Zions Bank. The bank is accepting donations under Teresa Peterson's name to assist the family.
Still, the family insists life has been good to them. They often host seminars for Intermountain Donor Services to put other families at ease about transplants and other health issues.
"We could write a book about the bad stuff," Troy said. "I don't care. It's no big deal. This is life. There are days when we don't feel like it, but for the most part, we try to get the most out of life."
And above all, it's important to remain lighthearted about it all, said the youngest Peterson boy, 13-year-old Jeremy.
"It's been fun learning new things, especially what people can go through," he said, "and my dad's been through all of them." |