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Waiting for Hope: A Transplant Story

23 December 2016

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Bryan Benefield hadn’t put his phone down for a year.

“I kept my phone in my hands at all time,” he says. “The clinic calls, and your heart goes to your throat – is this it?”

A year ago, Benefield was diagnosed with stage IV liver cancer and put on the transplant waiting list. Waiting in limbo day after day caused him anxiety, so Benefield tried to focus on what he could control: staying positive. He put his trust in God, his doctors and the process. “It’s hope,” Benefield says. “That hope overcomes everything.”

The Transplant Journey

Benefield, 59, grew up in Oklahoma and spent his entire career working for the U.S. Public Health Service. He worked as an environmental health specialist, inspecting hospitals and training workers in food handling. He switched over to IT and spent the majority of his career assigned to the San Carlos Indian Hospital, which is on the Apache Reservation in southwestern Arizona.

When he retired, Benefield had a routine physical exam, and that’s when he discovered he had hepatitis C.

Hepatitis C is a disease that baby boomers are five times more likely to have than any other generation, according to the CDC. Health experts are still unsure why this age group is particularly susceptible. One of the major risk factors for contracting hepatitis C is working in health care during years when hepatitis was most rampant.

“Thank God they caught it early enough to be on top of it,” Benefield said.

He started treatment right away through the Mayo Clinic, and his injections lasted for 48 weeks. The medicines he received are known to have major side effects. He lost 40 pounds. “That liked to have killed me,” he says. But his body was virus-free, and Benefield was ready to start recovering.

“I was clear for about three months and then boom! It was back with a vengeance,” he says. Benefield started a new type of treatment for hepatitis C -- one with fewer side effects. After 24 weeks, he was once again virus-free.

“But the damage was done,” he says.

The medicine that saved his life also took its toll. Benefield was left with stage IV liver cancer.

One year ago, his doctors put him on the transplant waiting list. The waiting list sorts patients by score. Benefield started out with a score of 6 -- far too low to receive a transplant. Some factors work in a patient’s favor, and some don’t. For example, Benefield’s blood type is A, which is helpful for the liver transplant waiting list. Patients’ scores are adjusted as their situation changes. As the months passed, Benefield’s score ticked up, all the way to 29, which is in the donation range.

The day before Thanksgiving this year, Benefield got the call he thought he’d been waiting for. He was a secondary recipient -- someone who could receive the liver donation if the primary patient couldn’t for some reason. He went to INTEGRIS, checked in and waited. The primary recipient was available, so Benefield left on Thanksgiving Day without a new liver. He had a Thanksgiving dinner with family and went to bed.

Then his phone rang at 2 a.m. letting him know this time a liver was definitely for him. While Black Friday shoppers were crowding the stores, Benefield was driving from his family ranch in Ada to INTEGRIS in Oklahoma City.

Benefield’s surgery went well. He spent only three days in intensive care. He eventually moved into temporary housing for patients who live far from the hospital. His doctor gave him one last examination, removed his staples and sent him home two weeks after his transplant.

“Everything has just been spectacular,” Benefield says. “I’m home.”

A career in public health left Benefield a little more able to understand the happenings of a hospital than the average patient. He says he is so grateful he had his surgery at the INTEGRIS Nazih Zuhdi Transplant Institute. The best part: the staff.

“They’re just so personable and caring and professional,” he says. “Professional with a heart.”

More than 1,000 patients have received a liver transplant at the Nazih Zuhdi Transplant Institute, and survival rates for those patients are higher than the national average.

Life After the Transplant

Benefield thinks about his donor all the time.

“All they could tell me at this point was that it was young liver,” he says. “That’s all I know.” At some point, the hospital social worker and a representative of the organ donation organization will talk about the liver inside Benefield’s body. The family of its original owner may want to hear from Benefield, may want to meet him. Maybe not. Whatever they choose is fine, Benefield said.

“The family’s grieving right now,” he says. “Everybody’s different.” He hopes someday he’ll be allowed to write them a letter.

“That’s going to be a hard letter to write,” he says. “I am so thankful, but there’s an element of guilt. Somebody’s lost a life in order to give you life. It’s going to be difficult to write, but I will. I will write them when the time comes. And if they want to meet, I’m willing to meet them so I can thank them personally.”

For now, Benefield is focused on staying healthy and caring for the gift he was given. The road to full recovery is long, and it’s stretched out before him.

“Life has changed,” he says. “My immune system is knocked down. I’ve got to avoid crowds and be very conscious of being around anybody that’s sick or a potential source of infection.”

Even the small things, like washing produce thoroughly, are critical right now to avoid infection. He can’t drive. He can’t lift most things. Family has been staying with him. He knows life will return to a new normal, but life will always be a little different than before.

“Last Christmas was full of unknowns,” Benefield says. “Just freshly diagnosed with cancer and full of questions, doubts and fears. This Christmas is -- wow. The world has changed. I’m cancer-free. I’m hepatitis-free. And I’ve got a new lease on life. It’s amazing. It’s just awesome. I’ve got so much to be thankful for.”