Billboard seeking kidney launches chain of giving

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Billboard seeking kidney launches chain of giving

Kristyna Wentz-Graff
Stephanie Henderson (right) of Kimberly talks with her surgeon, Allan Roza, and nurse Cami Meunier during a follow-up visit at Froedtert Hospital Dec. 14. Henderson had a kidney transplant Nov. 28, which was part of a chain of transplants arranged through a computer system.

By Mark Johnson of the Journal Sentinel Dec. 29, 2012

Terry Dvorak heard about the billboard on U.S. 41 - "Young Mother Needs Live Kidney Donor. Is It You?"

Two words resonated: "young mother." She had that in common with the patient seeking the kidney, Stephanie Henderson, an information technology worker from Kimberly.

Dvorak kept thinking: This woman needs to be there for her kid. Dvorak, a mother herself, would help this woman she'd never met.

She announced her intentions to her husband in a way that said, "This is not up for debate."

"She just told me she was going to donate a kidney," Carl Dvorak recalled.

That's when things got complicated.

It turned out that Dvorak, 46, could not give her kidney to Henderson, much as she wanted to. Tests showed they were not a match. In years past, that would have left Henderson stuck on the Froedtert Hospital kidney list, where the wait is between three and five years.

This time, however, Dvorak's offer of a kidney would set in motion a chain of gift-giving across the country. Her incompatible kidney allowed the hospital to use a relatively new strategy that is transforming organ transplantation.

On Nov. 28 a kidney from Maryland arrived at Froedtert. That afternoon Henderson, 38, was wheeled away for surgery.

"See you on the flip side," she told her husband.

In an effort to save lives and health care costs, computers at the National Kidney Registry's offices in Babylon, N.Y., Ramsey, N.J., and Chicago connect dozens of hospitals around the country representing hundreds of patients, in a never-ending bid to link each person in need of a kidney to someone with a kidney to give.

The idea is that if Dvorak's kidney doesn't work for Henderson in Wisconsin, maybe it works for another patient at another hospital. Maybe there is a California hospital with a patient who needs a kidney just like Dvorak's. And maybe that hospital has someone who tried to donate to the local patient, but couldn't - just like Dvorak.

Sometimes the best kidney for a patient in Wisconsin happens to be in California or somewhere else.

And if the hospital in California cannot directly help the hospital in Wisconsin, maybe it can help indirectly by sending a kidney to New Jersey or North Carolina to obtain another that will work for the Wisconsin patient.

These chains can grow into massive feats of coordination. One involved 30 kidneys and 60 patients.

"The computer system goes crazy trying to make these matches all day long," says Joe Sinacore, director of research and education at the registry's office in Ramsey, N.J.

This year the registry is on target to arrange 225 transplants, roughly the combined total of the three years from 2008 to 2010. The increase in transplants is helping reduce the time people wait for kidneys, and that in turn reduces national health care costs.

While they wait for transplants, many patients are forced onto hemodialysis. Three times a week for several hours each time they are connected to a machine that does what their kidneys can no longer do reliably: filter waste products from the blood. The annual cost of the sessions can reach $100,000 or more.

And some patients stay on dialysis year after year.

By comparison, a transplant costs roughly $100,000. Afterward patients also require medications to suppress their immune systems, an annual cost approaching $25,000.

Health care providers are saving money for kidney patients within a year and a half after a transplant, says Allan Roza, a transplant surgeon at Froedtert and professor at the Medical College of Wisconsin.

Paired exchanges, as these kidney swaps are known, have gained popularity in the United States in recent years and have helped the nation's kidney donation system function more efficiently.

"The concept started in Asia decades ago," says Johnny C. Hong, who was recruited this year from the Geffen School of Medicine at the University of California, Los Angeles, to run newly reorganized transplant programs for Froedtert, Children's Hospital and the Medical College.

"Most of the countries in Asia don't have a 'brain dead law,' so the only source (for kidneys) was live donors."

In the U.S. and other nations, doctors can harvest organs from people who have been declared brain dead provided the people have arranged to be organ donors or that their relatives give permission.

Still, there are always fewer kidneys than needed. Each year about 4,500 people like Stephanie Henderson die waiting for a kidney.

"So we have a lot to do," says Sinacore at the kidney registry.

The transplant at Froedtert Hospital on Nov. 28 was not Henderson's first. Headaches, blood in the urine and double vision led to her diagnosis of kidney failure in 1991. The following year she received a kidney from her mother at the Mayo Clinic in Rochester, Minn.

She was 17. Doctors said it was very likely she would need another transplant at some point in her life.

In late August 2004, Henderson's kidney problems returned, and by June of 2005 she was on peritoneal dialysis, a less burdensome form of dialysis. In 2010, after her appendix ruptured, she was forced back onto hemodialysis.

Twelve hours a week hooked up to a machine was something she did not need. Henderson was the family's primary breadwinner. She was raising a teenage son, Traven.

She had half-assumed that her father would be her backup kidney donor if she ever needed one. But people who have received one transplant become much harder to match for another. Her antibodies, the defense against bacteria, viruses and other invaders, had changed after the first transplant. Her father's kidney was no longer a match, and her antibodies posed a serious challenge for other potential donors.

As Henderson put it: "I was the bully in the petri dish. When you put my blood in with their blood, my antibodies would just demolish their blood."

In 2011, the billboard went up on the highway and FindStephAKidney.com went online. By then she had been on the kidney waiting list for seven years. There had been moments of promise when a match seemed close, but she never let herself get sucked in by hope.

"The only thing I ever really asked of God," she said, "was, 'Let me see my kid reach 18.' "

When Johnny Hong arrived at Froedtert and the Medical College this year, no patient from the Milwaukee area had been involved in a kidney chain. Hong and the medical staff, in particular Chris Johnson, chief of transplant surgery, worked to change that by registering Milwaukee's solid organ transplant program with the national registry. Joining the clearinghouse in May brought a swift payoff. Soon, a chain was assembling. Started by the altruistic donation of a kidney in California, the chain would link eight patients and four kidneys.

One kidney would be arriving in Milwaukee from Maryland; it would go to Stephanie Henderson.

Another would be leaving Milwaukee; Dvorak's kidney matched a patient in California.

Behind this organ matchmaking lay the complex logistics of scheduling flights, backup flights and couriers for the kidneys. Two different medical teams in two locations would have to coordinate the work on each kidney. The doctors removing the kidney and those receiving it would have to be in phone contact.

Long before the surgery, Dvorak and the other donors had faced their own logistics, requests for medical histories, meetings with dietitians and interviews with social workers and transplant psychologists. Approval for donation seldom takes less than two months.

Cami Meunier, a 37-year-old nurse at Froedtert who serves as the transplant coordinator for the paired exchange program, had come to know Stephanie Henderson and Terry Dvorak. They were alike in some respects, reserved at first. Their lives had been in a holding pattern for months, at least as far as their kidneys are concerned.

When Dvorak learned that, yes, after all of the monthly updates, the actual moment of donation had arrived, she felt a tremor of panic. A college theater student, she was directing performances of "The Best Christmas Pageant Ever." She could not miss it.

She directed performances Friday and Saturday and arrived at Froedtert on Sunday. Her surgery on Monday was a few days after Henderson's.

Different doctors at Froedtert performed the surgeries.

Transplant surgeon Roza inspected the kidney that had come in for Henderson, trimmed away the excess tissue and readied the blood vessels that would need to be attached to those inside the patient.

He made the standard incision, about 8 to 10 inches long, in Henderson's lower abdomen. Roza likes to have music in the surgery room, but he makes an exception for live organ transplants.

"I want absolutely no distractions," he said.

The surgery took around two hours. He followed the standard transplant procedure, leaving inside Henderson the old, failed kidneys. She would now have four, though only one would work . Once the new kidney had been connected to the blood vessels, it began doing its job right away. The new kidney started making urine.

Although Roza has performed these surgeries many times, he felt as he always does.

"I never lose the sense of awe and amazement that we're able to do this," he said. "Through the gifts of others, we're able to save lives."

The day after the surgery, Stephanie Henderson met Terry Dvorak for the first time. Even though they were links in a chain, not directly connected by blood or tissue, the moment was almost too much, too overwhelming.

Henderson did not know what to say beyond "Thank you." Words seemed inadequate.

Her family added their own thanks, telling Dvorak that she was "an angel," and that she was the reason Henderson would get to do so many things in years to come. Dvorak felt awkward. "Angel" was not how she saw herself.

The two women hugged. They had run out of things to say.

A few days later, on the morning of Dec. 3, it was Dvorak's turn to leave for surgery. Her husband was nervous.

"Don't die," he told her.

She was delivered to the hands of Johnson, chief of transplant surgery at Froedtert and a veteran of about 500 such procedures. Asleep, Dvorak was tipped on her left side. The procedure was laparoscopic, meaning that it required a relatively small incision, about three inches or so. When Johnson had removed the kidney, Dvorak's remaining kidney began to ramp up, assuming a larger share of the work. Eventually the single kidney would go from doing about 50% of the work to 75%. She would never again have 100% of her kidney function.

Blood was flushed from the donated kidney and it was triple-wrapped in plastic resembling a Ziploc bag. The bag was placed in a cooler and embedded in ice. Then a courier drove the cooler to the airport.

It was on its way to the patient in California.

A few days later the magnitude of what had happened finally hit the woman whose image had been plastered on a billboard above U.S. 41, the woman with the new kidney.

Stephanie Henderson was in her hospital room. From bed, she watched a woman walk gingerly along the hallway past her door.

Dvorak paused, glanced inside and greeted Henderson:

"Hi."

http://www.jsonline.com/features/health/billboard-seeking-kidney-launches-chain-of-giving-da8443r-185181352.html