RALEIGH, N.C. — Bob Warzel had what he thought was a successful kidney transplant a year ago. Two weeks later, he learned that the gift contained a hidden surprise — cancer.
Warzel, 66, who had the donated organ removed, has not developed the lymphoma evident in the kidney. But he and his wife, Patricia, have spent the last year struggling to learn how the incident occurred and working to make sure it never happens again.
The diseased organ came from Duke University Medical Center, reportedly recovered from a young man who died in a traffic accident. But the cancer wasn't discovered until after his kidneys were transplanted — one in Warzel and the other in an unidentified patient at Duke.
The Duke patient's body rejected the organ, and only then did tests reveal the cancer.
Beyond those basic facts, however, the Warzels have met stony silence as they have sought information about the donor, the eligibility screenings by the organ procurement agency or the suitability tests done at Duke.
"Everyone just wants us to go away," Patricia "Pat" Warzel said.
Citing a federal privacy law — the Health Insurance Portability and Accountability Act, or HIPAA — officials at Duke and Carolina Donor Services said that to protect the privacy of the deceased donor, they cannot speak about the specifics of the case.
In general, officials said, measures are taken to rule out donors who have diseases, including recent histories of cancer.
But "it's impossible to guard against every eventuality," said Lloyd H. Jordan Jr., chief executive of Carolina Donor Services, which arranges transplants in 78 North Carolina counties. "It is extremely rare that we have disease transmissions from a donor. It does happen, but it's extremely rare."
Federal records indicate that between 1994 and March of 2009, 39 deceased kidney donors nationwide had a history of lymphoma or leukemia. More than 16,000 kidney transplants are done a year in the United States, according to the U.S. Department of Health and Human Services.
Warzel's donor was probably unaware of his cancer, leaving his family with no information that would raise red flags about his organs during screenings by Carolina Donor Services and Duke.
A similar case came to light in 2008, when a 15-year-old New York boy died with undetected lymphoma. His liver, pancreas and kidneys went to four recipients, and two later died of the cancer.
Potential donors — often traffic or trauma victims — are identified by their driver's licenses, which carry a red heart symbol indicating their wish to give their organs for transplant. But in a race against time to preserve fragile organs that could save lives, the types of screening tests conducted are designed to catch the most likely and dangerous possibilities.
"We can't go and biopsy every single part of the body," said Dr. Deb Sudan, chief of abdominal transplant surgery at Duke. "If there's a suspicion, it would be looked at. But there would have to be something that raises a suspicion to do that."
Dr. John P. Leonard, an oncology professor and lymphoma expert at Weill Cornell Medical College in New York, said the kind of cancer Warzel's organ donor had, a slow-growing disease called splenic marginal zone lymphoma, could well have caused no symptoms.
Unless there were elevated white blood cell counts associated with advanced disease, he said, blood tests during the organ screening process would register as normal.
"These are chronic lymphomas, where patients often live for decades, sometimes without treatment, though in many cases they ultimately require treatment and sometimes can be life threatening," Leonard wrote in an e-mail.
Warzel, who retired to Calabash, N.C., four years ago after a career as a tool and die supervisor with a General Motors plant in Parma, Ohio, had chemotherapy last June after his doctors at UNC Hospitals removed the cancerous kidney. He has undergone frequent tests to check whether the cancer has taken root, and he so far remains free of the disease.
"We remain optimistic," said Dr. Thomas Shea, Warzel's oncologist at the Lineberger Comprehensive Cancer Center. "These diseases tend to grow slowly, so by definition, we have to follow people for a longer period of time until they're out of the woods."
Last summer, stymied in their efforts to get information about how the cancerous kidney went undetected, the Warzels hired a lawyer to pursue legal action.
"We weren't interested in damages," Pat Warzel said, "we just wanted answers."
Few answers materialized. Michael W. Clark, their attorney in Winston-Salem, N.C., said a medical expert he consulted at the University of Virginia found no deviation from the standard of care at Duke, since the cancer may not have appeared in the routine screenings required for organ donations.
Under North Carolina law, most medical malpractice cases cannot proceed without a medical expert to verify poor care or negligence. Even if the expert had found problems, Clark said he faced a monumental hurdle over HIPAA to get information about the donated kidney from Carolina Donor Services and Duke.
"It's one thing to be concerned about the confidentiality of a living person and another for the deceased person, as weighed against the interests of the living person," Clark said. "I think the person receiving the donor organ should have the superior right."
Clark and colleagues at his former law firm, Comerford & Britt, declined to take the Warzels' case. As a result, the Warzels have been left with no specifics about how well the donor was screened or whether there was any medical information that might have indicated the man was sick.
Bob Warzel's two kidneys retain limited function — native kidneys are not removed when donated organs are implanted — and he worries he'll eventually need dialysis. He now tends his wife, who was diagnosed with breast cancer last fall, and hopes to one day receive the lifesaving organ he needs.
"We would love to have answers," Pat Warzel said, "so that this doesn't have to happen to someone else."
HOW ORGAN SCREENING WORKS
1. A red heart on a drivers' license signifies a person's wish to donate organs for transplant. In the Triangle, Carolina Donor Services is the organ procurement agency that determines whether those wishes can be fulfilled.
2. In the initial screening, Carolina Donor Services workers ask relatives a lengthy list of questions about the potential donor, including medications taken, recent complaints such as vision difficulties or balance problems, and even whether tattoos and piercings are new.
3. If the interview raises no cause for concern, the hospital where the donor has been treated then conducts a battery of blood and tissue tests, including screenings for HIV/AIDS, hepatitis and other diseases.
4. Carolina Donor Services collects all the information and generates a computer list that matches the donor organs to people waiting for transplants.
5. The agency then contacts transplant hospitals that have patients who match the organs.
6. Doctors have one hour to decide whether the organs are suitable for their patients. If not, they're offered to another transplant center.
7. Matched patients are called and given the option of accepting or declining the organs.
8. Often, surgeons at the transplant center travel to the donor's hospital and recover the organs for their patients.
9. Within hours, a donor's heart, lungs, pancreas, kidneys, liver, eyes and other viable tissue can be used to save patients whose own organs are failing.
SOURCE: United Network for Organ Sharing
WHAT ARE THE ODDS?
Between 1994 and March 2009, 39 deceased kidney donors nationwide had a history of lymphoma or leukemia.
More than 16,000 kidney transplants are performed each year in the United States.
More than 84,000 people in the United States currently await a kidney transplant.
SOURCES: U.S. Department of Health and Human Services; United Network for Organ Sharing
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