Recasting the Future: Donor Families' Selfless Gifts Are Legacy and Life for Others
Twins Isabel Stenzel Byrnes and Anabel Stenzel have fought long odds since their birth 37 years ago. As infants, they were diagnosed with cystic fibrosis (CF), a genetically transmitted disease that causes a dysfunction of cells in the lungs so disruptive they clog with mucous, making every breath a struggle and infection a constant worry. In that era, doctors told parents that children with CF would likely not live through elementary school.
The Stenzel sisters survived, however, keeping tenacious hold of their lives. Beating CF meant enduring uncomfortable and hours-long daily physical therapy, complicated regimes of medications and many hospitalizations. And when, after three decades, the disease finally overwhelmed their lungs and threatened their lives, the odds had turned for the Stenzels.
Both live now with donor lungs, with more life before them. Both received their transplants by the Stanford Hospital & Clinics Lung Transplant team, a multidisciplinary group with an evaluation and treatment protocol that has made the Hospital one of the most active and successful lung transplant centers in the U.S.
"We have huge gratitude," said Stenzel Byrnes, "that we could be offered a lung transplant and that we could survive and do really well, that we’re still alive with every passing birthday."
Right place, right time
In 1990, when the twins arrived as freshmen at Stanford University and had their first consultation with Stanford Hospital pulmonologists and CF experts, lung transplantation had only recently developed beyond the experimental stage. Nine years earlier, Stanford’s Bruce Reitz, MD, one of the world’s premiere cardiovascular surgeons, had performed the world’s first successful lung transplant of any kind, as part of a groundbreaking double organ transplant of heart and lungs.
Reitz did the transplant surgery that gave Stenzel Byrnes and her sister their new lungs.
Stanford Hospital had long been at the forefront of transplant landmarks. Reitz' colleague at Stanford, Norman Shumway, MD, PhD, who performed in 1968 the first successful human heart transplant in the U.S., also developed and perfected several key breakthroughs in transplantation, including surgical techniques, the use of cyclosporine to reduce rejection and lowering body temperature for surgery.
Why it worked
Lungs, however, remain the least often transplanted organs in the body. On average, fewer than a thousand lung transplants take place annually, only 4 percent of the combined organ transplant tally.
The Stanford Lung Transplant program's volume and results put it among the top such centers in the U.S. Last year, Stanford's lung patients had the second lowest length of hospital stay compared to that of similar facilities. Research has shown that the more transplants a hospital does, the better the survival rate. The Hospital's program ranks, by volume, in the top ten U.S. transplant centers. It conducts an average of 40 to 50 lung transplant surgeries each year for people whose lung function has been destroyed by a variety of conditions, the most common chronic pulmonary obstructive disease, pulmonary arterial hypertension and CF.
We have huge gratitude that we could be offered a lung transplant and that we could survive and do really well.
- Physicians can transplant the heart, kidney, liver, lung, pancreas, intestine, bone and other tissues
- Stanford Hospital & Clinics is one of only three hospitals in California that perform transplants of heart, heart-lung, liver, lung, kidney, kidney-pancreas and intestine.
- In California, the current waiting list for organs tallies more than 20,000; total transplants performed in the state in 2006 reached 3,064.
- Nearly 80 percent of the current California waiting list requests are for kidneys. Last year, just over 10 percent of those requests were filled.
- Every 11 minutes in the United States, another name is added to the organ transplant waiting list. The current waiting list numbers more than 100,000. From January to May of this year, about 12,000 transplants were performed in the U.S.
- The length of time spent on a waiting list is determined by medical need, expected outcome, blood and tissue type, size of organ, height and weight of candidate, an individual hospital's criteria for recipient and donor acceptance, and distance between donor and recipient hospital.
This is a place where patients go because they've been turned down by others," said Lung Transplant Program Director David Weill, MD. "We've taken on higher risk patients in the last four years than we've ever done before. We're encouraged by the results we're seeing."
The Stanford program evaluates about 200 prospective transplant recipients annually, Weill said, and put about 50 on its list for transplants. The rate of transplantation is three times faster than the national average because of the Bay Area's excellent donor registration rate.
"It gives you a lot of confidence being at a facility with Stanford's experience, reputation and expertise. I'm an alum and I work there, so I know it like the back of my hand," said Ana Stenzel. "We are so grateful that we had this option."
Weill has headed the program since 2006, and instituted its most recent changes. Instead of looking for the most perfect lungs, he eliminated those he knew would not work. "We're aggressive about using those we think will work," he said. "Our patients come to us very ill, with few options. If you are very picky about which lungs you pick, that increases the wait and the threat to survival."
The program also takes an aggressive approach to lung preservation, care coordination, detecting organ rejection and long-term patient monitoring. From the get-go, Weill said, patients receive a full team evaluation that includes surgeons, pulmonologists, nurses, pharmacists, dieticians and social workers. The social workers are vital to pre-operative analysis, Weill said. The team also has two outpatient coordinators who organize and develop plans for postoperative care, when family support is invaluable.
One crucial element in transplant survival is attitude, something that the Stanford team works to identify in prospective recipients. The Stenzels understand very well what's necessary to make it through the difficult operation and post-surgical life with a transplanted organ.
"You have to know the reality but believe things will be okay," Stenzel Byrnes said. "It's not easy to do when you're feeling miserable. But you have to have that gusto, that energy, that will. The doctors are there to help us and serve us, but we are the ones who need to initiate, to follow through."
The Stenzels are stellar examples of what new lungs can mean. They swim—for pleasure and for the fitness that supports their overall health. Post-transplant, they have competed in four consecutive U.S. Transplant Games, both taking home medals in swimming, proving just how fully transplant patients can live.
We've taken on higher risk patients in the last four years than we've ever done before. We're encouraged by the results we're seeing.
They accomplished another long-time dream, finishing a book about their lives titled, "The Power of Two: A Twin Triumph Over Cystic Fibrosis." It has received excellent reviews and brought ongoing requests for them to speak at national and international events about CF and the need for organ donation. Ana Stenzel works as a genetic counselor at Lucile Packard Children's Hospital; her sister is a social worker, an accomplished bagpiper and, this summer, gave her first docent tour at a county preserve—a step toward fulfilling her dream to also be a naturalist.
Part of the twins' new lives is their continuing remembrance of their lung donors. Their donors' families "made a decision to say 'yes' to organ donation at a time of personal tragedy so that others could live," said Stenzel. "It was truly selfless and admirable and showed me the highest level of humanity. I hope that their pain of loss can be eased a bit, that they can know their loved ones left a legacy. I live and breathe each day in honor of my donor."
Developing new options
Physicians continue to refine the surgical techniques of lung transplant surgery and the combination and type of medications to reduce post-surgical rejection and prevent bacterial, fungal and viral infections. New approaches to donor lung removal, organ transportation and reconnection to the lung recipient are also developing. "Every couple of years it gets incrementally better," Weill said.
Stanford's Lung Transplant Laboratory is investigating mechanisms in chronic rejection, the major problem for transplant longevity. Patients at the Hospital are also part of several national clinical trials, including those looking at new immunosuppressive agents.
In July, Ana Stenzel marked the second anniversary of her second lung transplant; her body rejected her first transplanted lungs after six years. Last February, Stenzel Byrnes celebrated the fifth anniversary of her lung transplant.
She wrote in her blog. "I am feeling proud of all the experiences I've been able to have, thanks to healthy lungs. It's the little things that matter, the ‘firsts' I'm amazed I can do because I'm alive. It feels great to have a future."
On that anniversary, she went to a lung transplant support group. "I witnessed so many people in desperate trouble. Some of them are yearning to breathe, to go home, to be with family, just for the simple things I have every day. I cannot ask for more. No one knows what the future will hold, so this group offers that timeless message to stay in the moment."
For more information about donation: Donate Life California Organ and Tissue Registry, www.donatelifecalifornia.org, the California Transplant Donor Network, www.ctdn.org; Scientific Registry of Transplant Recipients, www.ustransplant.org.
Potential donors must be 18. Registration is available online at www.donatelifecalifornia.org/register/, or when renewing or obtaining a California Drivers License or California ID card. There are no disqualifying age or health condition requirements to register.