For the Johns Hopkins heart transplantation team, it's not just about changing hearts. It's about changing lives.

By By Virginia Hughes
Illustration by Polly Becker

The cover of the September 17, 1971, issue of Life magazine read, "The Tragic Record of Heart Transplants." Nearly four years earlier, Christiaan Barnard, a South African surgeon, had made history at Groote Schuur Hospital in Cape Town by taking the heart from a 24-year-old victim of an automobile accident and implanting it in the chest of a 67-year-old grocer named Louis Washansky. Washansky lived 18 days with his new heart before succumbing to pneumonia.

In the years immediately following this first heart transplant, hospitals around the U.S., including Johns Hopkins, rushed to copy the celebrated procedure. The surgery was not especially complicated: Connect the patient to a heart-lung machine, open the chest, excise the damaged heart while the machine kept the patient alive, suture in place the new heart, restart it, close the chest. The daunting complications came after the operation, when the patient's immune system did everything in its power to reject what it regarded as foreign tissue. Bill Baumgartner, Johns Hopkins Hospital's cardiac surgeon-in-charge, describes those days. "Everybody in the field was flying high in '68, '69," he says, "until they realized that all the patients were dying. You had a one-year survival rate of maybe 20 percent. It was dismal."

Over the next decade, survival rates improved, but heart transplantation was by no means a routine procedure. In May 1985, a 33-year-old mother of three named Carolyn Kramer became the 27th patient to undergo heart transplantation at Hopkins. Kramer had given birth to her third child in December of the year before. Weeks after the birth, she began retaining fluids, coughing, and feeling short of breath. She thought she had the flu, but the symptoms persisted, then worsened. Soon she could no longer hold her infant daughter. The dire diagnosis was peripartum cardiomyopathy — a rare and mysterious condition in which pregnancy causes heart failure. Kramer's stretched heart muscle simply wasn't pumping enough blood to sustain her. She needed a new heart. The hospital quickly found a donor, and Kramer's transplantation surgery went smoothly. Then the real battle began. Her immune system repeatedly tried to reject her new heart.

Baumgartner discharged Kramer so she could spend Christmas with her family in Bel Air, Maryland, while the transplantation team tried to figure out a last-ditch drug combination that might save her. Two weeks later, after she returned to the hospital for a heart biopsy, her cardiologist called her with results that no one expected. She says, "He told me, 'Pop a bottle of champagne! You're out of rejection.'" Apparently, the two-week hiatus from the powerful drugs had jolted her body into organ acceptance.

"Not many people get a second chance at life," Kramer says now of the almost 22 years she has enjoyed since her operation. "To have been at Hopkins when the surgery was still very much in the experimental stage is just . . . well, some days it's just very overwhelming."

Heart transplants do not make headlines now. Since Baumgartner and his best friend, fellow Stanford resident Bruce Reitz, came to Johns Hopkins to start the heart transplantation department in 1983, they and their colleagues have done 464 procedures. The staff of six surgeons, seven cardiologists, six nurse coordinators, and a social worker — many of whom have been around since the early days — performs about 20 such surgeries each year and now boasts a one-year survival rate of 86 percent. "Heart transplantation has gone from something that was considered to be a sort of scary, investigational procedure to an accepted way to take care of people with end-stage heart failure," Baumgartner says.

That does not mean transplantation is sustainable treatment for the future. While surgical techniques and medications have improved over the decades, the number of donor organs has not. In 1988, the earliest year data was recorded by the Organ Procurement and Transplantation Network, surgeons recovered 1,791 donor hearts for transplantation. By 2005, that figure had increased only to 2,220. At the same time, the population is aging, and thanks to bypass surgery, many fewer people are dying from heart attacks in middle age. So the rates of heart failure keep going up. According to the National Heart Lung and Blood Institute, 5 million people in the United States currently have some degree of heart failure. Each year, the disease contributes to or causes about 300,000 deaths, and about half a million more people are diagnosed for the first time. There are nowhere near enough hearts to keep them alive. "Despite a lot of public education, the number [of organs] has really just leveled in the last few years," Baumgartner says. "It's discouraging."

The good news is that medical advances now allow doctors to treat heart failure in many other ways. There are drugs to make the heart squeeze better. Cardiac surgeons implant mechanical devices — called ventricular assist devices, or VADs — to help weak hearts pump. "A lot of patients with heart failure can avoid transplantation altogether," Baumgartner says.

What most excites him, though, is research coming down the pike — research that may put surgeons like him out of business. For the last few years, Hopkins has been at the forefront of cardiac stem cell research that may prevent patients from ever suffering heart failure.

In the near future, Hopkins researchers in the lab will be forging a path toward a cure for heart failure. In the meantime, the same people who created the heart transplantation program will keep doing what they know best: caring for patients.

Debra Carter, Linda Dewberry, and Diane Skojec are heart transplant coordinators at Hopkins — the nurses who evaluate heart-failure patients to see if they belong on the transplant list, who teach families how to prepare for life post-transplant, and who are on call 24/7 for sick calls or to set up when a donor organ comes into the hospital. Among them, they have more than 65 years as part of the Hopkins transplant team. Photos and Christmas cards from former patients adorn their offices, and they can recount many stories. There's the one about Carol, who in her forties remained bubbly despite two transplant operations. She died in 2002, after the second heart gave in to coronary disease. In the same year, Dave, an active member of the patient support group, died after 16 years with his heart. His wife still calls the hospital to catch up with the nurses. Then there's Fred, who died in 1999 after getting a second new heart, and his daughter, who after 10 years with her new heart is still alive.

"You're there every single day," Carter says. "When you take care of people for 10, 15, 20 years, it's hard not to form close ties."

Kramer remembers being a patient when the doctors would come in on Saturdays for rounds and bounce her kids on their knees. Her hospital social worker, Helen Michalisko, watched those kids grow up, and says she will never forget the time 4-year-old Carl called her "Toots." Kramer and Carter lived in the same neighborhood, and Kramer is the godmother of Carter's youngest daughter.

While Baumgartner didn't perform Kramer's heart transplant, he took care of her — and all of the patients in the program's infancy — during post-operative recovery. Today, his wood-rich office is like him: large-framed, ordered, and distinguished, yet immediately comfortable. He describes himself as intense and obsessive-compulsive — "probably to a fault" — but leans into conversations, chuckles, and gushes over family photos like he's got all the time in the world. "Everybody who works in our program has a friendly demeanor," he says. "We want it to be that way from the top down. I really believe in it, and I think you can ask anybody in this place and they'd say we are atypical in that way."

Dr. B got started in this field in 1973, when, fresh out of medical school at the University of Kentucky, he became a general surgery resident at Stanford. His first rotation was under Norman Shumway, the legendary head of Stanford's heart transplant program and the second person ever to perform the procedure. Baumgartner spent the next eight years training as a cardiac surgical resident, working with Shumway and the rest of the Stanford team to refine the transplantation procedure and the immunosuppressant drugs that patients needed post-surgery.

At Stanford, Baumgartner hit it off right away with the soft-spoken Reitz, then 30 and also a resident. Reitz in 1981 partnered with Shumway to perform the first combined heart-lung transplant (which was also the first lung transplant). He became instantly famous. "He got calls from all over the country to take over this program or that program," Baumgartner says. One of these calls came from Johns Hopkins Hospital, where Reitz had done a one-year internship a decade earlier.

Hopkins surgeon Vincent Gott, who today runs the medical student program and is co-director of the Broccoli Center for Aortic Diseases, had done a heart transplant in 1968. "He did one patient, and the patient lived for a few months, and died," Baumgartner says. "So Dr. Gott said maybe we don't have the expertise to be doing this." When Reitz and Baumgartner came to Hopkins in 1983, there were only 11 heart transplant departments in the country. But by then the immunosuppressant drug cyclosporine had increased one-year survival rates to 80 percent, making heart transplants a viable treatment option. So the two friends took on the task of building the country's 12th transplantation department, at Hopkins.

"When Dr. Baumgartner and I came there," Reitz remembers, "we did a lot of changing." Previously, for instance, all cardiac surgery patients were cared for in the general surgery ICU. "So you'd have a heart patient next door to somebody who had a kidney transplant, and you didn't have specialized nurses for cardiac surgery." For the transplantation program specifically, they trained ICU nurses, hired a social worker and transplant coordinators, and developed an immunosuppressant protocol.

Other challenges in starting the transplant program, Baumgartner says, were organizing the recipient waiting list, acquiring donor organs, and distributing them. By 1986, this increasingly thorny task was taken on by a private nonprofit organization called the United Network for Organ Sharing, or UNOS (which now comprises almost 95,000 names). But when they started the Hopkins program in 1983, Baumgartner remembers, "the calls would come directly here. We had no network, we had no UNOS, you were everything — and with no one to pay for it."

Acquiring a donor organ is time-sensitive and expensive. Since hearts must be transplanted within hours of being removed from the donor, they are almost always flown into the hospital doing the procedure. (And yes, they really do come in red Playmate coolers.) Hopkins had no money for a plane. So Baumgartner turned up his Southern charm, talking to bigwigs of large corporations throughout Maryland and Delaware, including Dupont and McCormick. "It was amazing," Baumgartner says. "They donated the plane, the gas, the pilots, the whole thing. Sent them down to pick us up, and off we'd go."

House's heart was just what they needed. For many years it had pumped hard against his mucus-lined lungs, resulting in a right ventricle that was much thicker than most. In a surgery performed by Reitz, House received new lungs, with a new heart attached, from a car-accident victim. Baumgartner then took House's heart, with its strong right ventricle, and transplanted it into Couch. House would survive 14 months before dying from complications related to rejection, Baumgartner says, but Couch lived more than 10 years. The surgery sparked a media frenzy that included a front-page headline in The New York Times and a feature story in Time. "Oh my goodness, it was phenomenal," Baumgartner remembers. "We certainly had our 15 minutes of fame. I had no idea it would cause so much of a stir."

To the general public, this was the stuff of science fiction. The transplant coordinators tell stories today of misguided patients who thought their new heart made them root for a different football team, or suddenly crave fried chicken. One little girl thought that after her grandfather got his new heart, he wouldn't be able to love her anymore. The misconceptions weren't limited to the masses. Most referring physicians weren't educated about the procedure, and most insurance companies wouldn't cover the costs because they considered transplant too experimental. "We did a lot of dancing," says Michalisko, who is still the transplantation department's sole social worker. "Dr. B met with a lot of the medical directors of insurance companies to convince people this was the right thing to do."

Today, with tens of thousands of people living well with transplanted hearts, the surgery is no longer considered experimental. But current experiments and research may make them obsolete. Among the most promising avenues is research in cardiac stem cells. Just a few years ago, scientists thought it was impossible to grow cardiac stem cells — cells capable of dividing but destined to become a kind of mature heart cells (rather than, say, blood cells). "We thought the heart was a static organ, and if a cell dies, well that's too bad and it's going to be replaced by scar," explains Hopkins chief of cardiology Eduardo Marbán. But since the discovery of cardiac stem cells at the end of 2003, Marbán says, "the field's been through a complete paradigm shift. We've gone to a much more sophisticated view of a heart that does undergo cellular regeneration."

Right now, Marbán's team is halfway through trying the procedure on pigs. "It's exactly the same way we envision doing it in humans," he says. They first induce a large heart attack in the pig, leaving its heart in the same weakened state as someone with heart failure. "Then we take a biopsy from the pig's heart, wait for about four weeks while we raise about 10 million stem cells, then put them back in the pig's own heart. We know for sure so far that the stem cells do engraft and they do differentiate into beating heart cells and blood vessel cells." They're waiting to see how well the cells will actually repair the heart.

The jury's still out on whether cell regeneration will be enough, but Marbán is optimistic. If it can work in humans, he says it would be an ideal alternative to heart transplants because using the patient's own tissue eliminates any chance of rejection.

No other institution has developed methods for raising cardiac stem cells from small percutaneous biopsy specimens. And Hopkins is the sole recipient of a $12 million grant from the National Institutes of Health to do human clinical studies using cardiac stem cells. Phase one safety studies will begin in late 2007, followed by phase two efficacy studies, the results of which should be available by 2011. "Which is particularly exciting," Baumgartner says, "because it's really less than 10 years after the cells were even discovered. It speaks to the rapidity with which we can translate fundamental findings into new therapies — and the possibilities are mind-boggling."

Baumgartner by chance meets Kramer in his cramped office hallway. He's 15 minutes late for another meeting. No matter; he greets her with a big bear hug, and keeps one arm wrapped around her shoulders as he asks her how each of her three children is doing.

Kramer recalls Dr. B's visit on that night before Christmas in 1985, when he said they were sending her home because they could think of nothing more to try. "It was a traumatic night," she says. "But even after he told me, I still knew that I was going to be OK. I was never afraid. I turned my life over to the hands of this transplant team, and here I am almost 22 years later. And if that's not proof positive that they do a good job, I don't know what is."

Every year during National Organ and Tissue Donor Awareness Week, Kramer staffs an information booth at the hospital to talk about her story. She comes to the hospital one night a month for a meeting of the Heart Transplant Foundation patient support group, and still talks regularly on the phone to Carter and Michalisko. "You aren't just some file number here," Kramer says. "You are a living, breathing person, and they really care about you and what affects your family. They've been here for me since the beginning.

"I keep telling Dr. B I'm going to have a great big blowout bash for the 25th anniversary of my heart. It's going to be a black-tie event — and he better dance with me."

Virginia Hughes, A&S '06 (MA), is a freelance writer based in New York.

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