Liver Transplant Patient Story: Debbie Fleming
Liver disease is on the rise. Successfully managing this complex disease takes an experienced team. For many patients with advanced disease, a life-saving liver transplant is needed. At Froedtert & the Medical College of Wisconsin, world-class expertise and comprehensive care translate into patient outcomes that are among the best in the nation.
In March 2011, Debbie and Jack Fleming of New Berlin were invited to dinner with friends out of town. Deb Fleming decided to stay home.
“I didn’t want to go, because I wasn’t supposed to be more than an hour from the hospital,” she recalled. Deb had liver disease for years and was on the national liver transplant wait list through Froedtert & the Medical College of Wisconsin. She had been on the list just a short time, but the severity of her illness placed her near the top. Jack attended the dinner alone, then returned home later that evening. The couple had just turned in when the phone rang.
“It was about 12:30 at night,” Deb said. “I didn’t quite believe it. When you get a late night call, you think something’s wrong, but it was the opposite.” A donor liver was available.
A Growing Need
More than 16,000 people in the United States are on the United Network for Organ Sharing national wait list for liver transplant. Unfortunately, only about one-third will actually receive a donor liver. Experts expect the gap to grow even wider in the coming years as liver disease becomes more common.
About the Liver
The liver is the largest organ in the human body and one of the most versatile, aiding in digestion of food, making agents that help blood clot, and filtering toxins out of the bloodstream. Diseases that may affect the liver include hepatitis (inflammation of the liver), cirrhosis (scarring), fatty liver (accumulation of fat in the liver cells), and liver cancer (hepatocellular carcinoma).
Managing Liver Disease
It takes a comprehensive team to successfully manage liver disease, and Froedtert & the Medical College of Wisconsin provide care for people with acute and chronic liver disease as well as end-stage liver disease. Team members include hepatologists (physicians who specialize in liver disease), physician assistants, nurses and others who are highly trained and experienced in managing all types of liver disease.
“Not everyone with liver disease will need a transplant,” said Samer Gawrieh, MD, Medical College of Wisconsin gastroenterologist/ hepatologist and medical director of the Liver Transplant Program at Froedtert & the Medical College of Wisconsin. “Many people with less severe disease can live for a long time without developing complications.”
Froedtert & the Medical College also conduct research to study the effects of new drugs and treatments that can improve outcomes for patients. For people whose liver disease has progressed to liver failure, the symptoms become more notable: fatigue, jaundice, fluid build-up in the abdomen or legs, internal bleeding and even mental confusion. Cirrhosis, or scarring of the liver tissue, also puts people at higher risk for liver cancer.
“When liver disease progresses to liver failure, cirrhosis or liver cancer, the patient should be evaluated for liver transplant,” Dr. Gawrieh said. A multidisciplinary medical review board evaluates the patient’s candidacy for transplantation and other treatments and therapies; candidates accepted for liver transplantation are registered on the national waiting list. In liver transplantation, the organ allocation system is complex, but the overall goal is to get organs to the sickest patients regardless of how long they have been waiting.
"Running Out of Steam"
Debbie’s journey to transplant began nearly 20 years ago, when routine blood work revealed she was infected with hepatitis C. “I don’t know how I acquired it – nobody does,” she said. “I had never had any symptoms.” Debbie’s liver disease was monitored by her gastroenterologist for many years. She eventually developed cirrhosis and began to experience the symptoms of liver failure. “I was sort of running out of steam,” Debbie said. She began to retain so much fluid in her legs that her shoes no longer fit.
In 2010, she sought care at Froedtert & the Medical College through the Gastroenterology and Hepatology Clinic, and was subsequently evaluated by the physicians of the Liver Transplant Program, where she received a comprehensive evaluation.
During that process, diagnostic scans detected a cancerous tumor on her liver. Liver cancer was a setback for Debbie, but it ranked her higher on the transplant waiting list.
“Although having a liver tumor can position a patient higher on the transplant list, if it grows too large, the patient may no longer be a transplant candidate,” said Robert A. Hieb, MD, RVT, Medical College of Wisconsin vascular and interventional radiologist. Therefore, these patients often undergo treatment. Treatment is typically Regional Cancer Therapy, either therapy with radioactive microspheres or, as in Debbie’s case, high-dose chemotherapy, delivered directly through an artery to the tumor. Her response was good, and the tumor shrank significantly.
Debbie then began to prepare in earnest for a transplant.
Complete Liver Transplant Team
The liver transplant team includes hepatologists, surgeons, radiologists, specialized transplant nurses, physician assistants, psychologists, a pharmacist, dietitians, social workers and financial liaisons. In addition to extensive medical testing and psychosocial assessment, the transplant team focuses on readying patients for surgery and optimizing their opportunity for a successful procedure and a good recovery. Smoking cessation and abstinence from alcohol and recreational drugs are critical. The team also emphasizes good nutrition and physical fitness. Deb met with David Cronin II, MD, PhD, FACS, a Medical College of Wisconsin transplant surgeon and director of the Liver Transplant Program at Froedtert & the Medical College of Wisconsin since 2008.
“He told me I should take care of myself and lose weight for optimal health,” Debbie said. “On the way home, I stopped at Weight Watchers and joined the YMCA.” Debbie worked hard for weeks, and it paid off. The day she hit her 25-pound goal was the same day she received the late-night call informing her that a donor liver was available.
Exceptional Transplant Outcomes
Dr. Cronin understands what makes a transplant successful.
“Performing a liver transplant is doing the highest level of surgery on the sickest patients,” Dr. Cronin said. “It’s technically and intellectually demanding, incorporating medicine, surgery, immunology and pharmacology. “The key to a good outcome,” he said, “is comprehensive management of the acute and chronic complications that occur before and after transplantation.” This attention to detail makes a difference. Nationally, 89 percent of liver transplant patients survive a year or longer after their procedure. For transplants performed by the Froedtert & the Medical College team, patient survival is 95 percent (http://www.srtr.org/, July 2008 – January 2011).
When Debbie arrived at the hospital, the transplant team was in full swing. She was prepped for surgery, waited for several hours and, at 10:30 a.m., was brought to the operating suite. Dr. Cronin and the team operated for more than seven hours. After transplantation, Debbie was brought out of sedation. “I didn’t feel that bad,” she said, “and I was very emotional.” Two days later, she got out of bed and walked around her room. The third day was even better. “They told me I could go home when I could handle the stairs, so I was determined to try,” Debbie said. Under watchful care, she walked all the way around the unit and up and down a flight of steps.
Follow-Up Care After Transplant
After discharge, follow-up care is coordinated by a Froedtert & the Medical College transplant nurse coordinator, who helps patients navigate appointments, prescriptions, lab tests and other needs. The transplant team monitors patients closely for signs of rejection, graft function and side effects of medications that suppress the immune system.
“Infections are frequent, and the medications may lead to high blood pressure, high blood sugar and high cholesterol, which all need to be managed,” Dr. Gawrieh said. “Transplant patients receive lifelong follow-up, but the first three months are the most intense. After six months, many patients require only one anti-rejection medication. At this point, the majority of patients feel they are completely back to normal.
“While some liver diseases like hepatitis C infection can return, the majority of liver transplant recipients live long, healthy, high quality lives,” Dr. Gawrieh said.
Back to Work
At home, Debbie followed her medication plan and diet guidelines. Losing weight is difficult for most patients, but she has managed to take off additional pounds. After just two months, Debbie returned to her job doing computer work for a pharmacy service. “I think going back to work makes you feel better,” she said. “You get to talk to people, and you don’t dwell on things so much.”
Debbie gets tearful talking about the support she received at Froedtert & the Medical College.
“My caregivers were excellent, very positive and compassionate,” she said. “I feel very fortunate to have had all the doctors and nurses that I did.” She’s also thankful for her personal support system – her family and her husband, Jack. “He was there all the time for me,” she said. “And he still is.”