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Victoria man in need of second heart transplant (video)

By Elena Watts
Sept. 17, 2013 at 4:17 a.m.
Updated Sept. 18, 2013 at 4:18 a.m.

Kenneth Perez, 38, and his wife, Pilar Perez, 36, leave his room for a walk around the ward at St. Luke's Hospital in Houston. Perez is waiting for a heart for a heterotopic heart transplant. His wife  visits on weekends, and they take walks, watch movies and spend time together. During the week, she is home with their sons Ethan, 4, and Kaleb, 6, in Victoria.

Carnival Benefit

• 

WHAT: Activities, games and auction. Food includes turkey legs, hot dogs, nachos and Frito pies.

• WHO: Sponsored by Centro De Alabanza Church

• WHEN: Noon-8 p.m. Saturday

• WHERE: Quail Creek Park, 515 Chukar Drive.

• For more information, contact Julio Reyes at 361-571-1148.

To Donate

Visit First Victoria National Bank and reference the Kenneth Perez Heart Transplant Fund

Recycle life

Visit donatelifetexas.org/register to become an organ donor

In 1992, Good Friday was really good for Kenneth Perez and his family. The sickly teenager, who already had a big heart, gained another - surgically.

After 21 years, Perez is in need of another heart.

"I never thought about it - in my mind, I thought I'd live forever," Perez said. "I've lived life to the fullest, like there's no tomorrow."

How it began

Pneumonia infected Perez's lungs when he was 4 years old. As a result, he developed congestive cardiomyopathy, which required him to take medication every day indefinitely.

At 16, his heart began to fail with another bout of pneumonia.

Doctors in California told Perez he was not a prime candidate for a heart transplant. Corpus Christi doctors told Perez's parents that their son had six months to live, and that they should make him as comfortable as possible.

A two-hour drive to Houston turned out to be the best trip his family ever took.

At Texas Children's Hospital, which was on one floor of St. Luke's Episcopal Hospital at the time, doctors agreed to operate on the critically ill teenager.

"They said, 'You're not going anywhere; we're going to fix this,'" Perez said.

Dr. O.H. "Bud" Frazier, a surgeon and director of cardiovascular surgery research at the Texas Heart Institute, successfully argued to add Perez to the heart transplant list.

"He's my hero," Perez said. "An excellent surgeon."

His doctors acted as attorneys for him. They proved that he was a prime candidate for a transplant before a board of physicians.

He was in such poor condition, with high blood pressure in his lungs, that Frazier decided on a heterotopic heart transplant, Perez said. The procedure joined his heart with a donor's, and the two worked together.

"Not many are done now, and they were never common," said Dr. Deborah Ellen Meyers, a cardiologist and medical director of the Heart Failure Programs at The Heat Institute and St. Luke's Health System. "It takes a high level of skill and expertise."

"St. Luke's takes patients no one else will touch," said Henry Aceves, physician liaison with the Heart Information Center. "That's why we have a high mortality rate - we take very sick patients."

Perez told his doctors that he wanted to attend his high school prom.

"The doctor said he had a tux that I could borrow, and that they'd get me there," Perez said.

Perez's donor heart arrived within 24 hours, and his doctors made history on Good Friday 1992.

They performed three heart transplants the same day for the first time. The 17-year-old Perez was also the youngest patient at that time to have a heterotopic heart transplant.

"They worked around the clock - it was chaotic," Perez said.

The team was so short-handed that the doctors picked up the harvested organs themselves, Perez said.

Two weeks later, the teenager was on the dance floor at the Stroman High School prom with two hearts.

Life with two hearts

Perez attended ITT Technical Institute in Houston. He graduated with an associate degree in electronic instrumentation from Victoria College.

In 1997, he married Pilar Perez, 36, after dating a couple of years.

Sadly, they lost their first two children, Lauren and Jacob, because of heart problems believed to be genetic.

In 2007, a healthy boy, Kaleb Perez, was born. Ethan Perez, 4, followed.

Pilar Perez visits her husband on weekends and stays in Victoria with the children during the week.

"I tell everyone not to call me 10 minutes after I leave Victoria and 10 minutes after I leave Houston," she said. "Because I'm crying."

Perez is an instrument technician with Dow Chemical, where he works with Joshua Wittkohl, 37, of Port Lavaca.

"I wish all my friends were like Kenneth," Wittkohl said. "He's outgoing, easy to get along with, doesn't get mad when things aren't going right and wants to talk things out."

On the list again

In March, Perez experienced pain in the lower portion of his chest that ultimately landed him at St. Luke's Episcopal Hospital in Houston. Mild heart attacks were to blame.

"You never know when your time will come," Perez, 38, said. "So enjoy it while you have it."

His transplanted heart had developed coronary artery disease, a common limitation, Meyers said. And his native heart barely works.

"He has done incredibly well," Meyers said. "The average survival is 13 years."

Perez's donor heart has served him well for 21 years.

His status on the transplant list is one of the most urgent, Aceves said.

He will remain in the hospital until a donor heart that is suitable becomes available to replace his native heart.

"It could be a day or two years," Aceves said.

A donor's generosity allows good to come from tragedy, Meyers said.

"It's amazing for the donor family," she said. "It's not a total loss - their loved one is giving life."

Frazier will assist his protege, Dr. Hari Mallidi, with Perez's second transplant.

Doctors insisted on his hospitalization when they realized Perez could not slow down at home.

"He's been my sidekick since he was a little grasshopper," said his uncle, Jerry Gonzales, 68. "You can't slow him down - he never gives up."

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