Family Ordeal x 2
Gasping for air in the emergency room, Jim Roeck broke down when the doctor told him he needed a new heart. He was an amateur hockey player, just 26 years old.
The emotionless physician gave no optimistic reassurances that things were going to turn out all right, just brutal candor of his condition. Roeck’s first thoughts were of his son, who had just celebrated his 1st birthday. Then he asked if he would be alive in the morning.
When his mother, Yvonne Clark, was summoned to the hospital in the middle of the night in January 1996, she thought, “This can’t be happening to us again.”
Almost a year to the day, Clark’s other son, Christopher Roeck--a solid 220-pound bodybuilder--had been diagnosed with the same heart disease. He was just 21.
Since then, the Roeck brothers have had heart transplants, and become objects of interest among heart researchers. They and their mother’s relatives in Kenosha, Wis., are subjects of a study to determine if the family’s heart problems are due to a faulty gene that caused an enlargement of the heart known as familial idiopathic cardiomyopathy. Two of Clark’s young cousins died in recent years from the same disease.
Although there have been other cases where family members have received heart transplants, Dr. Fadad Esmailian, the UCLA Medical Center surgeon who performed both operations, said the Roecks’ case is very unusual because of their young ages.
“This is an extraordinary opportunity to learn more about this very serious disease,” said Esmailian, who has performed about 1,000 heart surgeries. “I have not heard of another case like this in the United States.”
Although Christopher, four years younger, was diagnosed with the disease first, in 1995, it was Jim who received the first transplant, on Sept. 26, 1996. Christopher received his new heart Feb. 28. Because of an immune system weakened by anti-rejection drugs, he has to wear a mask to avoid infections and avoid crowded places.
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Jim, who had a serious rejection problem that required a second surgery, said he was ambivalent about the notoriety he and his brother have received from the medical community.
“Sometimes I think that it’s kind of neat, but when you think about it, it’s not something you really want to be known for,” he said.
“It’s a little scary to lose your heart when you’re 23,” said Christopher, whose transplant was delayed with medication. “It would’ve been OK with me if this had never happened to Jimmy and me.”
Both brothers said they learned about their disease after almost fatal misdiagnoses by physicians at their separate HMOs. Christopher said doctors told him he was suffering from bronchitis. Jim said doctors treated him for a sinus infection and peptic ulcer before emergency room physicians at Hoag Memorial Hospital Presbyterian in Newport Beach took a chest X-ray and saw his diseased heart.
“In my case, nobody expected a 21-year-old kid to have something wrong with his heart,” said Christopher, who was an apprentice carpenter.
“It was eerie,” Jim said. “Both of us coughed a lot and experienced drenching sweats. We were bloated with fluids. Before my transplant, the doctors drained over 40 pounds of fluid from my body.”
Christopher said he received the same emotionless diagnosis from emergency room doctors at Fountain Valley Regional Hospital and Medical Center that Jim got from doctors at Hoag.
“It was pretty wrenching. The guy just walked up to me and said I needed a new heart, or I was dead,” said Christopher. “There was absolutely no preparation for what he was going to tell me. I started crying. It was the most frightening time of my life.”
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Christopher said that he knew that his heart was failing rapidly long before he was admitted to UCLA Medical Center to await a heart donor. He was showing the same signs of approaching death that his brother exhibited before his transplant five months earlier.
“I was in denial, but I knew what was happening to me,” Christopher said. “I prayed to God that he would let me wake up in the morning.”
Christopher was hospitalized for 12 days at UCLA before he received his new heart, and Jim was there for 11 days before his transplant. Jim’s donor was a 17-year-old auto accident victim. Christopher received his new heart from a 16-year-old. That is the only information doctors gave them about their donors.
“There’s both joy and sadness involved in a transplant,” Jim said. “You want a heart for yourself, because you want to live. I’ve got my wife, Dina, and son, Alex. But you realize that in order to live, someone else must die. That’s terribly sad.”
Esmailian said it was a coincidence he operated on both men, but said that he was shocked upon learning that Christopher was Jim’s brother.
“It was very upsetting to me at first, because the family had already gone through another crisis,” Esmailian said. “But then I was enthusiastic because I knew I could help the family.”
The brothers, who have no other siblings, said they have always been close, but their new hearts have brought them even closer.
“It’s like we’re each other’s support group. There aren’t many brothers who have gone through what Chris and I have gone through,” said Jim.
Clark looked at her sons and smiled in agreement.
“We’ve dodged two bullets. My sons are still with me, and when I think about it, nothing else in the world matters.”
