A helping hand for organ recipients

A helping hand for organ recipients

Specially trained social workers try to make transplant patients' lives a little easier

By HIRAN RATNAYAKE, The News Journal

January 23, 2007

When Nanci Woodson was diagnosed with kidney failure almost 14 years ago, she knew treatments were available. But she didn't know how to go about getting them.

"I didn't know anything about the transplant process," she said.

Eileen Edge came to the rescue. Then a transplant social worker at Temple University Hospital, in Philadelphia, Edge guided Woodson through several steps, including preparing her for her eventual kidney transplant and the medicines she'd be on the rest of her life.

"I don't know what I would have done without her," Woodson said.

Things have come full circle for both. Woodson's transplanted kidney stopped working and had to be removed. So the Wilmington resident is again on dialysis and again on the transplant list. And once again she's working with Edge, who is now the transplant social worker in Christiana Care's new kidney transplant program.

"We wanted to get someone with as much experience as possible," said Dr. John Swanson, surgical director and chief of the program. "These patients have so many needs."

There is a tremendous need for transplant social workers, whose patient lists grow as more people require donated kidneys. These social workers guide patients through the nonmedical aspects of the transplant process by educating them about what to expect. They assess patients for transplant-related emotional issues and connect patients to resources in the community that can help them resume a normal life.

And they play a pivotal role in the survival of the patient's new organ. "I am the resource for the life of their kidney," Edge said. "I know my patients for the rest of their lives."

Part of a team

Unlike many transplant social workers at other hospitals, Edge works only with patients in need of a new kidney, since that's the only program offered at Christiana. Social workers who deal with other transplants as well -- heart, liver, lung, pancreas -- can have a patient list of several hundred.

"We continue to see the same challenges," said Charlie Thomas, a board member of the Society of Transplant Social Workers. "More and more people are needing transplants. There are more and more living donor transplants. The best way is for a social worker to be part of a team."

Demand for transplantation has grown with the increasing success of transplant surgeries and the growth in diseases and conditions that lead to organ failure, said Joel Newman, spokesman for the United Network of Organ Sharing.

It's common for social workers to interview 200 to 250 patients each year, said Thomas, also a transplant social worker for Banner Good Samaritan Medical Center in Phoenix. "Sometimes they get on our list, sometimes they don't," he said.

Patients must be evaluated for drug abuse to make sure they're good candidates for a donated organ. "I've had people who've come in during screenings who've tested positive for cocaine," Edge said. "We don't want the organ to be wasted."

Before a living donor gives away a kidney, Edge must find out their reason for doing so.

"I ask them questions like, 'What would happen if five years from now, the recipient doesn't speak to you? Are you going to be OK with that?' " she said. "My job is to get them to think about the future. It makes them more aware, so it's not such a surprise if that happens."

Edge also counsels them about life insurance, because some companies may charge a higher premium for clients who have donated a kidney. "I tell them to increase the value of their life insurance policies before they donate," she said.

Her work with people in need of a new kidney is more complicated. If they're on dialysis, they need help adjusting their schedule to allot time for treatment amid their job or family responsibilities.

For patients taking several immunosuppressant drugs after a transplant, a social worker must make sure they understand the importance of taking the medicines. Likewise for transplant patients suffering from depression. Recipients of a kidney may be taking as many as 30 pills a day.

There till the end

Unfortunately, not all patients get the organ they need. When Edge worked with patients at Temple who were unable to get a donated liver, for instance, she'd be by their side as they took their last breath.

"You're helping the family as well as the patient," she said. "You develop a closeness with them."

For that reason, Edge said, people looking to go into this line of work need empathy. They also need the ability to multitask and work long hours. "Many times it's not a 40-hour week," she said.

Edge's dedication to her job helps Woodson wait for another new kidney. She's been on a waiting list for two years, though patients can be listed for as long as five years.

"Going through that traumatic experience," Woodson said, "you need someone who will help you learn how to take care of yourself for the rest of your life."

Contact Hiran Ratnayake at 324-2547 or hratnayake@delawareonline.com.
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ABOUT TRANSPLANT SOCIAL WORKERS

Transplant social workers guide patients through the nonmedical aspects of the transplant process. They work closely with doctors and other health care personnel to evaluate patients. Among other duties, transplant social workers assess patients for changes in their psychological state and assist them with finding the services that will help them maintain a healthy new organ.

Almost all transplant social workers in the United States have a master's degree in social work. There are more than 500 social workers who work with transplant programs nationwide. Their salary generally ranges from $40,000 to $65,000.

Sources: United Network for Organ Sharing; Society for Transplant Social Workers

URL: http://www.delawareonline.com/apps/pbcs.dll/article?AID=/20070123/HEALTH/701230339/-1/NEWS01