A Gift
Freely Given
In an act of altruism, a nurse donates her
kidney to a stranger
   
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United Network for Organ Sharing

Johns Hopkins Hospital kidney donation procedure

   
     

The Ins and Outs of Laparoscopic Nephrectomy

Joyce Roush, RN, never considered donating a kidney until she heard about a new technique for retrieving kidneys, the laparoscopic nephrectomy.

Pioneered at Johns Hopkins Hospital by transplant surgeon Lloyd Ratner, MD, and urologist Louis Kavoussi, MD, the operation lessens patients’ recovery time, pain, and scarring, said Kathryn Dane, RN, the kidney/pancreas evaluation nurse who coordinated Roush’s care.

Instead of the traditional method of slicing a large incision across a patient’s back, cutting through muscle tissue, and occasionally breaking a rib to harvest a kidney, surgeons performing a laparoscopic nephrectomy make only four small incisions in the patient’s abdominal area just below the navel. They then insert a video camera and retrieval instruments to maneuver to the kidney and remove it.

“It’s a little more time-consuming because it’s so technical,” Dane said. But recovery time is decreased considerably. “With the traditional method, it would be about four to six weeks that the patient would be recuperating. With the laparoscopic, they could be back to work in two weeks.”

Roush only took two weeks of sick leave for the surgery and recovery. After working part time for two weeks, she’s now back full time as a coordinator of hospital and physician services for the Indiana Organ Procurement Organization in Fort Wayne.

~Anne Federwisch
   
     

An Ethical Dilemma

Besides bringing the need for organ donation into the public spotlight, Joyce Roush’s gift of her kidney to someone she didn’t know raised ethical red flags across the country. Without the inherent benefit of helping a loved one, what’s the benefit for the donor? Does the benefit outweigh the risks of surgery and living with only one kidney?

The medical directive to first do no harm guided the Johns Hopkins Hospital team that performed the transplant, said Kathryn Dane, RN, a transplant coordinator at the facility. The team took pains to make sure Roush knew the risks and was physically and mentally capable of undergoing the procedure.

Roush’s surgery prompted the ethics committee of the United Network for Organ Sharing in Richmond, Va., to discuss living non-directed donations (those given to someone other than a relative or friend), said Bob Spieldenner, UNOS spokesperson. The organization deemed them ethical as long as donors receive no payment for their organs—as was the case with Roush.

Directed donations give rise to their own ethical quandaries, Spieldenner noted. Family and friends can exert a great deal of pressure on someone who might be unwilling to donate an organ otherwise.

People don’t know they can live completely normally on one kidney, Roush said. She was surprised by the reactions of those close to her, especially about the risks involved with the procedure. “If I’d been getting a face-lift or a boob job done, it would have had just as many risks, my recovery period would have been longer, and no one would have thought it was any big deal,” she said.

She also never worried about her family’s future need for one of her kidneys. “I’ve never lived my life by ‘what if,’” she said. “If that ‘what if’ happens, there will be an answer at that time.”

No one is questioning Roush’s motives, which her medical examiners concluded were completely altruistic. “It’s a remarkable thing she did, as much as she denies it,” Dane said.

Roush believes she gained from her endeavor. “Probably the biggest benefit is that for one moment, with one person, I had a chance to make a difference,” she said. “I could save a person’s life. What a gift that is for me.”

~Anne Federwisch
   
 

By Anne Federwisch
Photo: Courtesy of Joyce Roush
November 1, 1999

As a certified procurement and transplant coordinator for the Indiana Organ Procurement Organization in Fort Wayne, Joyce Roush, RN, knew of the dire need for kidney donations. She knew that more than 43,000 Americans await kidney transplants each year. She knew that the 11,990 transplants annually don't come close to fulfilling that demand. Most significantly, she knew that 2,300 people die each year waiting for a life-sustaining donation

So after she learned about laparoscopic nephrectomy at a March 1998 conference for transplant coordinators, she knew what she wanted to do: donate a kidney to whomever needed one.

What she didn't know at the time was how long it would take, how much convincing her family would need, and how instrumental she'd be in bringing the need for kidney donors into the national spotlight.

Never in doubt

"It was an instantaneous decision and one I never had second thoughts about," Roush said.

But she was surprised to be only the second person in the country to make that decision (a woman in Minnesota reportedly donated her kidney to a stranger shortly before Roush did). "I had this vision that it would be like when Elton John tickets go on sale in Fort Wayne," she said. "I had this funny mental image that lots and lots of people would want to do this." But they don't. Only 163 kidney donations a year come from living donors unrelated to the recipient. Virtually none are non-directed, that is, given to someone other than a friend or a relative.

Roush's husband and five children were not as enthusiastic as she was at first. "Honestly, my husband about threw up" the first time he heard about the idea, Roush confessed. But by giving him and her children a continuous stream of information for the year and a half before her surgery-and by never wavering in her conviction to donate-"by the time September came, they were 100 percent behind me," she said.

An absence of protocols

The surgery didn't take place until Sept. 7, which surprised even Roush. "When I do an organ donation case [with a donor who has just died], I can have all the major organs in the body allocated in the period of a few hours," she said. "It never dawned on me it would take 18 months."

Part of the delay arose from the uniqueness of the situation as no protocols existed to guide the team through the process of readying a living donor and an unrelated recipient. "It was sort of a work in progress as we went along," said Kathryn Dane, RN, the nurse at Johns Hopkins Hospital in Baltimore who coordinated the many tests Roush underwent to determine her suitability as a donor.

"They did every test you can imagine," Roush said. The thousands of dollars worth of blood tests, CT scans, and mental and physical examinations cost her nothing-the hospital billed the recipient's insurance. Although the transplant team wanted to confirm that Roush's kidney was healthy, "more of their concern was that my decision to do this would not do me any harm in the present or potentially in the future," she said.

The battery of tests eventually confirmed that Roush's motives were altruistic, her health good, and her psyche intact. But a suitable beneficiary remained elusive. The mother of the first potential recipient stepped in at the last moment to donate her own kidney. Johns Hopkins physicians ruled out a second compatible patient when medical tests deemed her too high risk for the procedure. The ultimate beneficiary was Christopher Bieniek, a 13-year-old from Aberdeen, Md.

Sparking an interest

Yet Roush's potentially trend-setting action has affected more lives than just Christopher's. A friend persuaded her to go public with her story to spread the word about the need for donations and to spur more people into action. "Organ donation is not one of those things that makes very good cocktail party talk," Roush said, because it usually involves discussing death. But the story of a woman who gave a kidney to a teen-ager she didn't know is great fodder for small talk.

One hundred fifty media interviews later, the message is taking hold. Roush's nephrectomy "gives more people reason to think about donation," said Sam Davis, Roush's supervisor at the Indiana Organ Procurement Organization. "Whether they want to do it when they're dead or whether they want to do it when they're living is something else they need to think about." Johns Hopkins reported calls from 40 potential donors after Roush's surgery. Queries to the Indiana Organ Procurement Organization increased, and calls to the United Network for Organ Sharing doubled.

Others are heroes

But one area that probably won't be affected by Roush's unselfish donation is her own work with families of potential donors. "I will never tell a family I'm dealing with that I've been a donor," she vowed. "I would never want them to feel pressure to donate their loved one's organs because I was a donor."

Because she made her decision to donate her kidney at a time when she was experiencing no pain or loss in her life, Roush truly believes it was no big deal. "Those people who make that decision after they've just been told that their child has died or their husband or wife has died, and a few minutes later they're saying, 'Yes, take the organs, help somebody else,' those are the people who are the heroes," she said.