Surviving Against All Odds
Stephanie Haines is in the prime of her life. At just 25 years old, success seems to follow her: the valedictorian of her high school class, the recipient of a full-ride college scholarship, two college degrees under her belt and a rising accountant at a large Omaha business.
But ask Haines and she will tell you that she is just happy to be alive. Haines knows what it means to survive against all odds.
During her first year of college, Haines was diagnosed with pancreatitis due to a condition called pancreatic divisum. While many patients with pancreatic divisum experience no symptoms at all, such was not the case for Haines. Haines suffered repeated attacks. In the end, it almost took her life.
For four years, Haines staged an aggressive battle against this unrelenting condition. Fourteen surgeries later, with little or no progress, Haines’ options were running out. She was told that removal of her pancreas, combined with an autologous islet transplant, was her last option. That’s when she landed at the Transplant Center, a joint program of The Nebraska Medical Center and the University of Nebraska Medical Center (UNMC).
Pancreatitis is an inflammation of the pancreas that can cause severe abdominal pain and other complications. Pancreatic divisum is a congenital abnormality of the pancreas in which the two ducts of the pancreas fail to fuse together before birth. One of the jobs of the pancreas is to produce enzymes for digesting food in the intestine. These enzymes drain from the pancreas via the pancreatic duct. In Haines’ case, the major duct was not connected to the pancreas and the smaller duct was so narrow that the enzymes kept backing up into her pancreas, causing acute episodes of pancreatitis.
Haines’ first attack occurred in June 2004 when she was 19 years old. The pain was so piercing that her mother rushed Haines to the emergency room where no definitive diagnosis was made. When the pain continued, doctors suspected her gallbladder was the culprit which was subsequently removed in August.
But just two weeks after the gallbladder was removed, the pain attacks started up again, this time more frequently and for several days at a time. Further tests pointed to pancreatitis caused by pancreatic divisum. The treatment at the time was a procedure called endoscopic retrograde cholangiopancreatography (ERCP) in which a series of three stents are placed in the small duct over several months. Each time a larger stent is inserted with the goal of stretching and enlarging the duct. The closest medical center that performed this procedure was in Milwaukee.
Over the next two and one-half years, Haines made numerous trips to the Milwaukee hospital, but with little or no success. She was in the hospital more than 20 times and underwent 13 stent placement surgeries, each time spending a week or more in the hospital with painful pancreatic attacks.
All the while, Haines continued her studies, pursuing not just one degree, but two, in both accounting and management information systems. With her on-going medical problems, Haines didn’t have much of a college social life, so she used her health issues to help her focus on her studies. “It was difficult at times, because I was missing so much school,” she says. “And even when I was there, I was often sick, tired and fatigued. But the teachers were really supportive and helped me catch up and stay on course.”
At the end of the thirteenth stent placement, doctors determined that her small duct was kinked, which explained why the stent surgeries were having little or no impact. Fortunately for Haines, in the four years since she was diagnosed, another option had become available — an autologous islet transplant. The procedure involves removing the pancreas, then harvesting the islet cells from the pancreas and transplanting them back into the liver. This allows the liver to take over the pancreas’s job of producing insulin. Without the islet cell transplant component of the procedure, Haines would have become a brittle diabetic. Autologous islet cell transplantation can prevent diabetes or reduce the severity of diabetes after removal of the pancreas.
Haines had heard about the world-class organ transplant program at UNMC and The Nebraska Medical Center. Her father, who was seriously ill with cirrhosis of the liver, was on the transplant waiting list there. When she contacted the Transplant Center, she was connected to Jean Botha, MB, BCh, a transplant surgeon at UNMC and The Nebraska Medical Center. Dr. Botha had successfully performed three of the islet transplant procedures, a procedure that is performed at just a few medical centers in the country. Dr. Botha is known for his innovative surgeries, including autologous islet transplants, liver and pancreatic resections and liver transplants.
“If patients are well-selected, they can do very well with this procedure and live a long time,” says Dr. Botha, who is also director of Hepatobiliary Surgery and an associate professor of Surgery at UNMC. “If you use the patient’s own islet cells, there is no risk of rejection which eliminates a lot of complications. For Haines, this was her last option. She was a perfect candidate.”
Testing revealed that Haines was indeed a good candidate, but her time was beginning to run out. Her pancreas was feeling the results of 13 procedures, causing damage to her pancreas with each surgery. The transplant needed to be done soon.
On Aug. 11, 2008, Haines successfully underwent the 12-hour surgery. For the first five months, Haines had to take insulin until her islets took over the job of making insulin on their own. While she no longer takes insulin today, she continues to take oral enzymes to help her digest food every time she eats. James Lane, MD, endocrinologist and director of the Diabetes Center at The Nebraska Medical Center, plays an integral role in Haines’ care to ensure her insulin and blood sugar levels are managed properly.
Digesting food properly is an ongoing problem. But Haines looks at it as a trade-off. “My pain is gone and I’m alive,” she says. “If I would have kept going without a transplant, my pancreas would have eventually given out on me and I would have died.”
Her father was not so lucky. He passed away while waiting for a liver to become available. “It was hard,” says Haines. “I felt like I got a miracle and he didn’t.”
The experience has helped shape Haines’ personal and professional goals. “I may not be able to work in the healthcare field as a doctor or nurse, but I can work in the financial area,” says Haines. “My goal is to become a CFO in the medical field so that I can make sure hospitals have funds for research so they can continue to help people like me by finding new treatments and cures.”
Innovation and research have always been top priority at the Transplant Center, home to one of the largest and most successful programs in the world for kidney, liver, pancreas, intestinal and multi-organ transplants. “Our program is committed to not only providing the highest quality of care, but also to innovate and to push for new treatment advances so that we can provide more opportunities for people to receive life-saving therapies,” says Alan Langnas, DO, transplant surgeon, director of the Transplant Center, chief of the Division of Transplant and professor of Surgery at UNMC. “While we do a really good job of performing routine transplants, at the same time our mission is to continually move the field forward by always looking for new and better ways to do improve the field of organ transplantation.”
The program’s success and drive to innovate speaks for itself. Founded in 1970, the kidney transplant program performed the first kidney transplant in the state. Now celebrating its 40-year anniversary, the kidney transplant program has become widely recognized as one of the most active and innovative kidney and pancreas transplantation centers worldwide. The program is a leader in adult, pediatric, living-donor transplants and laparoscopic kidney procedures and consistently achieves graft and patient survival rates higher than national averages.
The liver transplant program, which has reached its 25-year milestone, also has earned an international recognition and a worldwide referral base. In 2004, the program reached a milestone shared by very few transplant centers in the country by performing more than 2,000 liver transplants and more than 500 pediatric liver transplants, making it one of the most active and advanced centers in the world.
Innovation, solid outcomes and high patient survival rates have bolstered the status of the intestinal transplant program as a national leader. The Transplant Center specialists were among the first to begin performing combined liver and small bowel transplants. In 1993, the medical center became one of the first transplant programs to perform isolated intestinal transplants. Today, the Transplant Center is one of a few facilities in the country with expertise in this unique transplantation technique — and one of the busiest.
Continuing a pattern of success and innovation, the Transplant Center broke ground in 1989 by starting a pancreas transplant program, a time when this procedure was just beginning to gain acceptance. Since then, the pancreas transplant program has experienced overwhelming success and is among the most active and pioneering centers in the world. The Transplant Center became the fifth center in the world to perform more than 200 pancreas-only transplants and consistently ranks within the top five centers for performing adult pancreas transplants. The Transplant Center physicians are pioneers in both islet cell transplantation research and clinical trials.
There are many components that make a successful organ transplant program. But perhaps one of the most important components is the people, notes Dr. Langnas. “Our staff is what helps set our organ transplant program apart from others,” he says. “Being located in Nebraska gives us the opportunity to have some really fantastic people as part of our team. They bring with them the Nebraska touch — a personal, caring and generous approach combined with a great work ethic. We’ve also been very fortunate to recruit some of the best and brightest physicians to lead the program. They all bring their own unique style and skills, which collectively helps enhance the depth and scope of the entire program.”
Dr. Botha is one of those surgeons. He grew up in South Africa and received his medical degree and completed his residency training at the University of Witwatersrand in Johannesburg, South Africa. He went on to complete his fellowship at UNMC in solid organ transplantation in 2002. When he received an offer to stay, he said it was an offer he couldn’t turn down.
“The things we were doing here were so advanced,” he says. “I just felt that I wouldn’t be able to do these same things at home.”
Dr. Botha is continually looking for new and better treatment options to help reduce the shortage of transplants and reduce waiting times. “Once you are put on an organ waiting list, up to 10 percent or more of these people will die before an organ becomes available,” says Dr. Botha. “My goal is to reduce that gap.”
In addition to the autologous islet transplant procedure, Dr. Botha is a leader in liver and pancreas resections and adult-to-adult living donor transplants. Surgical resections are performed to treat localized cancer in the liver or pancreas. Adult-to-adult liver transplants are helping address the shortage of donor liver organs. The number of patients awaiting liver transplantation greatly exceeds the supply of cadaver donor organs. Living donor transplants involve removing a section of the liver from a living donor and transplanting it into a donor. Because of the liver’s ability to regenerate, both portions of the liver regenerate back to full size for both the donor and the recipient.
Dr. Botha is continually refining this procedure to minimize the risks to the donor. “This is the only operation where two lives are at stake,” he says. He has pioneered use of the smaller left lobe as opposed to the right lobe for resection, as it is safer for the donor. “I’m very excited about this procedure,” he says. “I think this is going to be the way moving forward for adult-to-adult living donor liver transplants in the future.”
The transplant program has been a leader in liver transplants since the program was founded in 1985 by Michael Sorrell, MD, a gastroenterologist and a world leader in hepatology, and Byers Shaw, MD, surgeon and former chairman of the Department of Surgery at UNMC. It was the opportunity to be involved with medical leaders like these that enticed Wendy Grant, MD, a leading transplant surgeon who specializes in liver and intestinal transplants to train here and continue her transplant surgery career. “What makes our program so successful is the mix of disciplines and the fact that we have some of the leading physicians in the field right here,” says Dr. Grant, an associate professor of Surgery at UNMC.
Dr. Grant is involved with the transplant surgery fellowship program at UNMC where she helps train transplant surgeons. “Our program has trained some of the best transplant surgeons in the country,” she says. Dr. Grant is also co-chair of the Fellowship Training Committee for the American Society of Transplant Surgeons.
She and other members of the transplant team continue to push the program forward through their involvement in both clinical and bench research. “The advantage to patients is that this means we are not complacent in our care,” says Dr. Grant. “Through research and clinical trials, we are constantly trying to figure out how we can do transplants better.”
Dr. Grant also performs intestinal transplants, a program which ranks second worldwide in the number of transplants performed. Dr. Langnas started the program in the early 1990s, and today physicians from all over the world come to the Tranplant Center to observe how the transplant team performs liver and intestinal transplants. Despite the program’s success, intestinal transplants still have lower survival rates than heart, lung and kidney transplants. This is because of the complexity of the procedure and the need to use more immune-suppression drugs because of the higher rejection rates associated with this type of transplant.
David Mercer, MD, an intestinal transplant surgeon, is director of the Intestinal Rehabilitation Program, a program that works hand-in-hand with intestinal transplant patients. Dr. Mercer comes from Canada where he completed his medical degree, PhD and surgical residency training at the University of Alberta in Edmonton. When he decided to specialize in transplant surgery, UNMC was the training program that was recommended by fellow peers over and over again. After completing his fellowship here, he returned home to Canada. But before long, he was back. “Once I left, I knew I had to come back,” says Dr. Mercer, who is also an assistant professor of Surgery at UNMC. “There just wasn’t that same spirit like there is here to initiate and innovate, to constantly improve and make things better.
“Dr. Langnas has built a very competent and supportive staff. There’s a spirit of camaraderie among our staff that just doesn’t exist at many big institutions. Within a short time of coming here, patients feel that spirit, too. They are part of a big family where they know they will be supported and understood.”
The Transplant Center is one of just five large intestinal transplant programs in the country and is often a patient’s last stop.
“This is a place of technical excellence,” says Dr. Mercer. “We are prepared to tackle operations that most other transplant surgeons won’t touch. This comes from years of refining the procedure and eliminating sources of error. When you keep perfecting a surgical technique, your degree of technical complexity and ability to expand on whom you can perform surgeries on increases. There’s rarely a case that we will turn down unless we feel it won’t benefit the patient.”
But not every patient who comes to The Nebraska Medical Center in intestinal failure will leave with an intestinal transplant. The Nebraska Medical Center’s intestinal transplant program is one of a few in the country that is tied very closely to an intestinal rehabilitation program, a difference that has a significant impact on a patient’s care and treatment.
“Patients who come here are receiving not an intestinal transplant evaluation, but an intestinal failure evaluation,” says Dr. Mercer. “While the difference in words is subtle, the approach to their care is significantly different. In up to a quarter of cases, we find that we can treat their condition and delay or eliminate the need for a transplant by engaging the patient in intestinal rehabilitation as opposed to an intestinal transplant.”
The Transplant Center is also leading the country in performing multi-organ transplants — also called multivisceral transplants. This includes: liver-intestines, kidney-pancreas, kidney-liver, heart-liver. “Almost half of our intestinal transplants are combined with liver,” says Dr. Mercer. “Patients in liver failure usually need both.”
The Transplant Center’s kidney program has made tremendous strides since the program was founded in 1970. Back in its early days, kidney transplant survival was just a few years. Today, survival is up to 10 to 15 years or more, depending on the health of the patient at transplant.
Not only has survival increased, but so have the number and type of patients who can be transplanted, as well as the types of donor organs that can be used for transplant. “We have greatly expanded the availability of organs by increasing the use of living donors over the last 10 years,” says Michael Morris, MD, a kidney transplant surgeon of 23 years who joined the Transplant Center staff approximately two years ago. Dr. Morris, an associate professor of Surgery at UNMC, came from Avera McKenna Hospital and University Health Center in Sioux Falls, S.D., where he was director of Solid Organ Transplantation for five years.
The experience and expertise of the transplant team is also increasing the pool of patients who qualify to be a transplant candidate. “We’re often sent the sickest patients,” says Dr. Morris. “Our goal is to be able to transplant more patients with co-morbidities. We try to do most everyone unless we think it’s not going to benefit them. This mentality allows us to be fairly aggressive in our program.”
Kidney transplants are performed on patients in kidney failure commonly due to diabetes or hypertension. While some patients can survive on dialysis for 10 to 20 years, quality of life can suffer. “Transplant patients routinely score higher on general well-being and quality of life surveys than dialysis patients,” says Clifford Miles, MD, an assistant professor of Internal Medicine at UNMC and a nephrology surgeon who joined the program in 2007. “With a transplant, patients can live and work and travel more normally.”
One of the biggest challenges with kidney transplant patients is the chronic diseases many of these patients develop as a result of diabetes and hypertension. “These are systemic diseases that can affect all of the organs,” says Dr. Morris. “Many of these patients come with several co-morbidities, including severe diabetes, hypertension and heart disease that require a multi-disciplinary team of specialists to care for them post-transplant.”
This is another important component of the organ transplant program. A dedicated team of multi-disciplinary healthcare professionals ensures appropriate care before, during and after the transplant, which is especially critical to this group of patients due to the multiple health issues many of them bring with them. “We have a large and experienced team of transplant surgeons and excellent support from all of the ancillary services we need to make our program successful,” says Dr. Morris, “including cardiology, radiology, vascular surgery, endocrine and infectious disease.”
Despite the many challenges inherent with these patients, the Transplant Center continues to achieve patient survival rates that exceed national averages.
“Volume begets expertise,” says Dr. Miles. “If you follow 1,500 patients in your clinic annually, you’re going to have the opportunity to see many more types of cases and continually perfect care.”
Repeat transplants, which are more complex and challenging, are also commonplace at the Transplant Center. Repeat transplants are more common among those who received their first transplant as a child. “We’ve performed fourth and fifth transplants in some people,” says Dr. Miles. “We’ve become quite skilled at this procedure.”
Other members of the Transplant Center team include transplant surgeons R. Brian Stevens, MD, PhD and Lucile Wrenshall, MD, PhD.
“I consider our physicians some of the best in the world,” says Dr. Langnas. “We’re not too much unlike a football team in that we are always looking for the best athletes. My job is to provide a little direction and support and then let them do what they’re good at. And ultimately, that’s when great things happen.”
Stephanie Haines considers herself a beneficiary of the positive results that can occur when you let “great things happen. The Transplant Center is amazing,” she says. “I feel so fortunate to be able to benefit from such an exceptional program that’s right here in Nebraska. I’m here today because of them.”