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One year after double hand transplant, progress elusive

By Madison Park, CNN
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Amputee gets new hands, has regrets
STORY HIGHLIGHTS
  • A year after becoming first to receive a double hand transplant in U.S., man ponders his decision
  • Man requires 50 pills a day and six hours of therapy to regain some function of his hands
  • Transplant was just the beginning of recovery
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Augusta, Georgia (CNN) -- Jeff Kepner's new hands slump on the table, like ill-fitting, flesh-colored anchors fused to his arms.

Hashmark scars line his lower arm. His right index finger stubbornly curls while the rest lie straight.

Kepner fidgets in his seat and strains his neck to check the clock hanging on the wall, to see when today's therapy session is over.

No one can say exactly when Kepner's hand therapy will end.

More than a year after becoming the first person to receive a double hand transplant in the United States, Kepner's new hands jut from his arms like foreign objects that he cannot control.

"They're heavy," he said flatly.

Kepner's surgery last May at the University of Pittsburgh Medical Center in Pennsylvania generated headlines.

This week, surgeons at the Jewish Hospital Hand Care Center in Louisville, Kentucky, performed a 17-hour operation, the third double hand transplant in the United States.

That patient, Dr. Richard Edwards, a chiropractor, was injured in a burning truck in 2006. The Edmond, Oklahoma, man suffered severe burns on his face, back, arms and lost function of his hands.

Edwards' wife, Laura, reached out to Kepner's wife, Valarie, on Facebook after Kepner's transplant in May 2009.

"All of us are in the same situation," says Valarie Kepner.

As of August, there have been 61 hand transplant operations worldwide, according to the hospital.

And Jeff Kepner is one of them.

"I got it," he said about the surgery. "And I regret it. It's over and done with. I didn't dream there would be this much therapy."

Kepner's fingers do not bend to his will. He scoops things into the palm of his hands, but cannot distinguish textures, whether it's a wooden block or his wife's hands.

So every weekday for six hours, Kepner works with a hand therapist in Augusta, Georgia. He has made some progress: He can pinch items between the thumb and forefinger of his left hand.

His eyes glaze as he stacks plastic cups, scoops rubber balls and attaches plastic tubes together for the thousandth time. Kepner utters only a word or two to his therapist during the long hours of repetitive hand exercises.

The activities strain his upper body and are designed to rewire his brain to take control of his new hands.

He nibbles only half an apple and sips coffee for lunch. Since the surgery, he has lost about 60 pounds from his 5-foot-9-inch frame.

Friends and family had thought that perhaps by now the former pastry chef would again be getting ready to bake holiday cookies, just like the ones he made that dangled on a Christmas tree in the White House. The former softball player who had a nice fastball would be able to pick up a Wii remote and duke it out with his teenage daughter, they thought.

Instead, the surgery is just the beginning.

Kepner's kitchen shelf is crammed with Betty Crocker cookbooks -- cheesecake recipes and others from Southern Living collect dust. He has yet to play the popular Nintendo game, although daughter, Jordan, has challenged him.

"I feel bad. He sits through hours [of therapy] every day," said Jordan, 14. "I can't imagine what that's like."

But, she added, "He's strong."

Kepner met Valarie in the Air Force in San Antonio, Texas, and they bonded over similar hometown roots in Pennsylvania. After 20 years in the Air Force as a sergeant, Kepner went to culinary school, graduating in 1998.

Read their story here

A year later, Kepner lost both hands and feet to a strep infection. The bacterial infection stopped the blood flow to his limbs, blackening his hands and feet, as if they were frostbitten. The drugs used to fight the strep also damaged his joints, necessitating a double hip replacement.

After the amputations, Kepner gradually regained mobility using hooks for hands and walking on prosthetics. He found a part-time job at the local Borders bookstore.

"When I had the hooks, I worked and drove," he said. "I did lots of things."

He wasn't completely independent. His wife of 19 years helped him get dressed and showered, fitting him into special water-friendly prosthetics. Although he had some mobility with the prosthetics, Kepner functioned on his wife's schedule, instead of his own.

His wife first found out about the hand transplants, which would be free of charge to them because it's a clinical trial at the University of Pittsburgh. The surgery could restore full use of his hands, they hoped.

Although the surgery was free to the family, the amount of time Valerie Kepner, a government employee, has to leave work and the long stays in Pittsburgh have become an unexpected financial burden, the Kepners said.

On a recent August day, Valerie Kepner comes home from work, gives her husband a quick kiss and asks how his day was. The wrinkles in her husband's face loosen.

"We're not risky people," she said. "We're not the type of people who go bungee jumping. It was not a risky decision."

"You have to be well-informed. This is a long process," she said.

Unlike an organ transplant, a hand transplant is more complicated because it involves multiple types of tissue: bones, skin, tendon, nerves and blood vessels.

"For a hand transplant to work, it needs to function," said Dr. W. P. Andrew Lee, the lead surgeon in Kepner's transplant. "That's what's unique. It needs to move and have sensation."

It takes time, he said. In 2003, the doctor visited a double hand transplant recipient in Austria six months after the operation and was discouraged by the patient's lack of mobility or sensation.

But that patient improved eventually and can now disassemble a pen and put it back together.

"After three to four years, he had very good function in both hands," said Lee, chief of the division of plastic surgery at the Pittsburgh hospital. "I think he is a good example of how it can take years for function to return, particularly for a transplant at the forearm level. It's a much longer distance for nerves to generate from the forearm, wrist and hand. It can take years for function to return."

"All the hard work he has been doing will eventually pay off," Lee said of Kepner.

Hand and face transplants are controversial, because unlike organ transplants, it's not a matter of life or death, but a risky procedure to improve quality of life.

With hand transplants, Art Caplan, a bioethicist said, "you need to prepare for failure as well as success."

Kepner received a bone marrow transplant to re-educate his immune system, so he only needs one medicine to suppress his immune system. But Kepner still takes about 50 pills a day to counteract the side effects of the immunosuppressant.

"I don't see the light at the end of the process," Kepner said. "If three or four years later, nothing's going to happen, yes, I would say take them off."

His wife understands his disappointment.

"I understand he's very disconcerted because he was very independent," she said. "Here we are a year later. It's been very rocky. ... We're not giving up hope at this point."

 
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