For Marie Twyman, having a kidney transplant program close to home was about more than convenience. It meant independence. Twyman could drive 10 minutes to Christiana Care Health System’s Newark campus, but she’d need a ride to get to a hospital in Philadelphia.
Care close to home also meant a personal relationship with her doctors and staff. The New Castle woman can always count on Medical Director Stephanie Gilibert, M.D., for straight talk about her health.
“She will say, ‘Miss Marie, do you want to keep your kidney?’” Twyman said. “She’s still my buddy.”
Ten years ago on Jan. 15, Twyman became the first adult kidney transplantee in Delaware. Since then, more than 250 people have received a new kidney at the Christiana Care Kidney Transplant Program.
Kidney transplants are life-saving and transformational. Before Twyman’s transplant, even seeing food on a TV commercial caused her to experience waves of nausea. And because of incontinence, every trip out the door was fraught with worry.
After her transplant, her appetite came back — and she lost weight.
“When I walk, I walk with a strut,” she said.
Though transplants capture the imagination in a way that case management does not, the true measure of this program is about more than transplants. For each patient who receives a new kidney at Christiana Care in a typical year, Christiana Care actively manages about 35 more patients. This care includes screenings for new patients, health management for those on the waiting list and monitoring after a transplant.
“We consider this a lifelong commitment to them,” Dr. Gilibert said.
Christiana Care’s kidney transplant program arose from a simple idea: Delaware’s kidney transplant patients (there are about 55 in a typical year) can and should be screened, transplanted and cared for in their state. After all, a transplant is not a one-time procedure. Patients must be frequently tested while they are listed and after a transplant. Traveling long distances can be especially taxing for those suffering from chronic kidney disease. And when a kidney becomes available, time is short, so a long drive can sometimes be disqualifying.
Also, some insurance programs don’t cover out-of-state transplants, or they cover them to a lesser degree.
S. John Swanson III, M.D., FACS, chief of transplantation surgery, was ending a two-decade career with the Department of Defense when the opportunity arose to lead Christiana Care’s kidney transplant program. He became employee No. 1 in July 2006.
His experience was augmented by other veterans, and soon enough their challenge wasn’t performing transplants — it was convincing the public that they were ready. After all, signing up at a transplant program is an act of faith by a patient, who must believe the program can secure a kidney and be ready to transplant it at a moment’s notice.
While assembling the medical expertise to earn that trust was key — the program’s success rates are as good as any institution in the region — competency is only one element of trust. Building relationships by getting to know patients on a personal level is the culture of the transplant program.
“They see us as their family,” said Dr. Gilibert. Some patients stop by just to chat over coffee and a bagel.
Building a relationship with patients serves a medical purpose, too. Trust is elemental throughout health care, but that dynamic is even more pressing in transplant medicine.
Patients on a transplant list can be understandably worried that disclosing their health conditions could lead to their removal from the list. But they quickly learn there is little to gain by hiding an incipient illness.
“It’s easier for me to take care of you if you don’t get really sick,” Dr. Gilibert said.
For the 300 or so patients on the waiting list, health management is crucial. These patients may develop multiple medical conditions that could, especially if untreated, jeopardize their chances of qualifying for a donated kidney.
Gerard J. Fulda, M.D., FACS, FCCM, FCCP, chair of the Department of Surgery, said a patient whose health is not well managed — if they are hospitalized for another reason, for example — may not be medically ready to accept a kidney. Part of being an effective steward of these organs is ensuring that your patients are healthy enough to make use of them.
Meanwhile, the medical scrutiny on transplantees and donors has led to ancillary benefits such as referrals for weight loss and bariatric surgery and the early detection of many cancers, said Aline Stant, MSN, transplant coordinator and quality assurance and performance improvement manager.
“People have no idea how much work it takes to transplant someone,” she said.
All told, the transplant program now cares for more than 1,100 patients. Since the program’s inception, it has screened more than 4,500 people. Thanks to the transplant program’s growth, nearly nine in 10 Delawareans who have health insurance can be covered for transplantation at Christiana Care.
As he reflects on the first 10 years of the transplant program, Dr. Swanson said that its future will include an even greater emphasis on prevention.
“We all love to do a transplant, but we prefer not to have to do them,” he said. In other words, public outreach can help put Delawareans in control of their kidney health, preventing the need for a transplant.
Population health, an approach that considers the health of the public at large, will be even more of a focus in coming years, as it is with Christiana Care generally.
The transplant program is involved in a study about the connection between hypertension, or high blood pressure, and kidney health among African-Americans, who are at a higher risk for hypertension.
“Our focus will be on patient-based research,” Dr. Swanson said.
It will also continue to raise the profile of living donation, which effectively saves two people: The person who receives the donation and the stranger on the waiting list who receives the next kidney in their place.
Living donations are “not only a huge humanitarian gesture but significantly help reduce the number of folks waiting,” Dr. Fulda said.
For a few years after Twyman first saw a Christiana Care nephrologist, in 2001, medication and lifestyle changes kept her kidney problem in check. But as her health worsened, the prospect of dialysis, the filtering of blood by machine to compensate for an ailing kidney, loomed.
Twyman, now 73, had watched her mother and sister-in-law endure the thrice-weekly procedure, so she knew the toll it could take.
Though dialysis is necessary for patients with chronic kidney failure — and Christiana Care’s nephrology care is ranked among the top 50 in this specialty nationwide by U.S. News & World Report — it exacts a heavy toll. In its most common form, called hemodialysis, patients must sit in a clinic for three- to four-hour sessions. Many patients are so drained that it takes more than a day to feel decent again — just in time for another session.
Even for all that, it is far from a cure-all; only about 35 percent of hemodialysis patients remain alive after five years. It also costs an average of about $90,000 a year.
“I would say, ‘Oh Lord, I’m coming to D-Day,’” Twyman said.
She was sitting on the couch when the call came. After hanging up, she held hands with her sister and prayed. Later that day, Twyman came to the hospital for what she thought was a brief blood test. But as she walked into the parking lot afterward to head home, she turned to see a cloud of white coats rushing after her.
Twyman was to have the operation that day. A kidney was available for her.
The procedure was successful, and on Jan. 15, 2007, she became the first adult to receive a kidney transplant in Delaware. Eight days later, the program’s surgeons performed the state’s first live-donor transplant of an adult.
Twyman measured her recovery in months, but she has sweet memories of the nurses and doctors who cared for her.
“They make you feel wanted,” she said.
Now, a decade later, she is healthy enough to maintain her independence and still lives along the quiet New Castle street where she has spent the last 40 years.
As the transplant program comes closer to its goal of providing a kidney transplant for every Delaware adult who needs one, Dr. Gilibert believes that the personal touch that began with patient number one, Marie Twyman, will continue with each new patient.
“I can’t not see or remember my patients,” she said. “They are our neighbors.”
It’s Delaware, after all. Dr. Gilibert and her colleagues routinely run into their patients at the grocery store, or the mall or the movie theater. Caring for their neighbors is The Christiana Care Way.
“Are we expected to take ownership for the health of our patients?” Dr. Gilibert said. “Heck yeah.”