There are several "stop-gap" surgeries and treatments before pancreatectomy and islet auto-transplant becomes an option, but not every case responds to these therapies, said Dr. Vikesh Singh, the medical director of the program at Hopkins. Sarver was a good candidate for the pancreatectomy because her previous gallbladder surgery was ineffective and no other interim surgeries were possible because of the particularities of her case.
Removing the pancreas has been controversial since doctors at the University of Minnesota started doing it in the 1970s, but it has slowly gained steam in recent years, Singh said. Of the more than 400 pancreatectomies the University of Minnesota has performed since 1977, at least half have been since 2006.
More than 80,000 people are diagnosed with chronic pancreatitis each year, according to the National Pancreas Foundation. Singh said it could be hard to diagnose because upper abdominal pain can be mistaken for many other ailments. He estimates that fewer than 100 patients undergo surgeries like Sarver's each year in the United States.
Without an islet transplant, pancreatectomy patients become insulin-dependent diabetics, so removing the organ was (and sometimes still is) considered radical, he said. Even when the islet transplant is successful, the patient can still develop diabetes either immediately or years down the road because the cells don't divide and multiply once they've been moved to their new home in the liver.
"A lot of people will tell me, 'I'm so sick of the pain that I'd rather stick myself with a needle every day,'" Singh said. "That's when I know someone's ready for this."
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Other complications of the surgery include the possibility that the bowel can completely shut down, which, in one case, resulted in the patient having to have the colon removed as well, Singh said. It's not clear why this happens in some patients.
Johns Hopkins performed pancreatectomies with islet auto-transplants starting in 1978, but it stopped in 1981 because a patient died from a complication of the surgery, Singh said. In 2011, it renewed the program that, with a new team, would maximize outcomes and minimize complications with the latest techniques and technologies. Johns Hopkins is the only hospital that removes the pancreas, extracts the islet cells in the back of the operating room and puts them back in the patient all in one (albeit long) procedure. Surgeons only have to open the patient once.
Now, Makary said he's beginning to operate laparoscopically, making the surgery minimally invasive. Since the program started, the team has had about two patients per month -- Sarver was its 13th. Patients 11 and 12 made themselves available to Sarver to help her weigh whether to have the surgery and what she could expect afterward.
Sarver spent 18 days in the hospital after surgery, pushing herself to gradually walk more, take less pain medication and eat better.
Sarver recently returned to Baltimore for a follow-up visit, and was given a clean bill of health. While she was there, she met with patients 14 and 15, wanting to pay forward what previous patients had done for her.
"It's not about losing hope but about losing forward momentum," she said of her life before the surgery. "You're stuck where you are in one place trying to deal with a challenge that sometimes is a whole lot bigger than you."
For Sarver, being able to ask patients about their experiences made all the difference.
"Having someone to talk to who's been through the same thing is comforting," she said, adding that she's also spoken to the two more patients scheduled for surgery in February to help in any way she can. "I'd really like to do that for other people as well."