“It was a life of suffering. … When you suffer with pancreas pain, you’d rather be dead.”
That was how Karen Grippen described the four years of her life during which she experienced constant pancreatic attacks due to chronic pancreatitis. Pancreatitis is the inflammation of the pancreas, and chronic pancreatitis is distinguished by its unrelenting presence and resistance to many treatments. This ailment subjected her to “unbearable” abdominal pain, digestive disability, countless hospitalizations and a major surgery. Grippen’s first attack was in the fall of 2009 and, soon after, she realized that eating any type of food would catalyze an attack. Her chronic pancreatitis was difficult to diagnose, and it was not until after she had endured two years of frequent hospitalizations that she was told she had pancreatitis. After attempting other less-invasive solutions and four years of reliance on a feeding tube 24/7, Grippen’s doctors suggested that she consider having the entire pancreas removed through a process called total pancreatectomy with islet autotransplantation (TPIAT) to relieve her pain and prevent any further damage.
When a Vital Organ Goes Wrong
When the pancreas is inflamed, as it is when one suffers from pancreatitis, the digestive enzymes usually excreted by the pancreas become self-destructive, eating away at the pancreas tissue that produced them. Across the United States, there are about 56,000 hospitalizations caused by pancreatitis. The majority of pancreatitis cases do not recur after initial treatment, and most do not require surgery or other invasive interventions. Some patients with chronic pancreatitis require endoscopic or surgical operations to drain an obstructed pancreatic duct. Rarely, surgical removal of the pancreas is required to relieve symptoms.
“When you remove the pancreas, you not only feel severe pain, but you develop diabetes because the main source of insulin is removed from the body,” Sayeed Malek, MD, clinical director of Transplant Surgery at BWH, explained. “Without treatment, the body suffers from severe blood glucose swings that can be life threatening. Imagine you are driving a car and experience a dip in your blood glucose level. You could suddenly lose consciousness.”
An Innovative Surgery to Remove the Pancreas
In 1977, doctors at the University of Minnesota sought to maximize the efficiency and minimize the negative side effects of pancreatectomy, namely the development of type 1 diabetes. The procedure they developed is known as total pancreatectomy with islet autotransplantation. TPIAT involves removing the entire pancreas but isolating and preserving the pancreas islet cells, the insulin-producing cells of the pancreas. The patient’s islet cells are then reintroduced into the patient’s liver while the surgical procedure is still occurring. The transplanted islet cells can then implant and function in the liver to produce insulin and reduce or even eliminate the diabetes associated with total pancreatectomy.
Six of these procedures have been conducted at BWH; while results vary between patients, all of them have experienced reduced pain and improved quality of life. While one patient with marginal insulin production before the operation requires full insulin replacement, others are free of any requirement for insulin shots.
Malek and Thomas Clancy, MD, associate chief of the Division of Surgical Oncology, combine their expertise to complete this day-long procedure. After Clancy removes the pancreas, gallbladder and duodenum, Malek separates the pancreas from the two other organs and cleans it to preserve the pancreas. The pancreas is then placed in a container in an ice cooler and taken to an islet isolation facility located at Massachusetts General Hospital, where the pancreatic islet cells are isolated. This procedure takes between two and a half to four hours. The success of the procedure will depend on how many islet cells are preserved or lost through the purification process.
“You have to find the right balance,” Malek said. “If you lose too much of the cell mass during the purification process, the procedure won’t be as effective.”
Simultaneously, at BWH, Clancy reconfigures the patient’s digestive system. Since the duodenum is connected to the small intestine, after its removal, the rest of the small intestine must be reattached to the stomach to ensure proper digestive flow. Though, to some, taking a patient’s organ to another building in the midst of surgery may seem unusual, both Malek and Clancy agree that that isn’t the most stressful part of the procedure.
“The time crunch is in the beginning,” Clancy explained. “At the start, we want to remove the pancreas as quickly and as safely as possible to preserve the islet cells that will later be used. Once the pancreas is handed off, it is more relaxed.”
When Malek returns from MGH with the liquefied islet cell mixture, it is introduced into the patient’s bloodstream via an IV connected to the portal vein, which flows directly to the liver. If all goes smoothly, the islets will be able to assimilate within the liver and continue producing beta cells and insulin naturally. The assimilation of the new mixture into the liver is a critical moment in the process. To prevent blood clots that could form during the infusion of the cell mixture to the liver, blood thinners are used.
A Happy Ending Breeds Hope for the Future
Well-aware of the risks of the surgery—namely the development of type 1 diabetes if the transplanted islets did not engraft, the possibility of blood clots, and the possibility that her pain would not improve—Grippen decided to proceed with the operation without hesitation. She cites the day she found out she was a candidate for the procedure as “the happiest day of my life.”
Four months after her surgery, Grippen stopped feeling pancreatic pain. Today, she manages her blood glucose levels through diet and exercise during the day and low-dose insulin shots at night.
Despite the success of Grippen’s surgery, Clancy stresses that total pancreatectomy will be recommended for just a limited number of patients with severe chronic pancreatitis, and the hope is that most patients will not need this surgery. Grippen’s operation was a year and a half ago and, in the meantime, she has picked up hobbies such as kayaking and swimming and has gone back to work. She has tried to keep her life “as normal as possible” and sees each day as a gift better than the one before.