Food started to bother Allison Sarver when she was 18 years
old, giving her attacks of nausea and pain after meals. By the time she was 24,
she would sneak out of her office after lunch to lie down in her car until the
attacks passed. By the end of that year, she was no longer able to eat or drink
anything and had to rely on intravenous feeding to survive.
After years of alternately ignoring the symptoms and getting
misdiagnosed with ailments such as irritable bowel syndrome, a doctor in
Philadelphia finally told Sarver she had chronic pancreatitis, meaning her
pancreas -- the organ that produces insulin and other enzymes necessary for
digestion -- had become scarred and enflamed. Unable to eat without pain,
Sarver lost 30 pounds in two months and was found to be deficient in vitamins
A, B, D and E.
While grateful for a diagnosis, getting treatment for her
pancreatitis remained another matter. "I was told, 'If we can't help you,
no one else can help you,'" she said, referring to her team of doctors.
"I thought, 'There has to be a place that does [treats] this.'"
An Internet search led Sarver to the pancreas clinic at
Johns Hopkins Hospital in Baltimore, which specialized in pancreatitis.
They had been performing a surgery on some of their patients
that involved removing the entire pancreas, extracting its insulin-producing
cells -- called islets -- and moving them to the patient's liver. The liver
would then take over the job of producing insulin to regulate blood glucose
levels, and the patient would take enzyme pills to fulfill the pancreas's remaining
jobs, which include aiding in the digestion of fats, carbohydrates and protein.
In April 2012, when Sarver first started seeing the Hopkins
doctors, she couldn't imagine having her entire pancreas removed. It was just
too radical a procedure for her, she said.
As she alternated between broth diets, feeding tubes and
intravenous nutrition over the next several months -- and still experienced
pancreatic attacks and other complications -- Sarver waffled between ignoring
her ailment to panicking about it. On a drive to visit her sister at
Pennsylvania State University one weekend, Sarver had to undergo an emergency
operation because her intestines wrapped around her feeding tube and caused a
hernia. Other emergency room visits were simply because she couldn't weather
the pain of pancreatitis attacks at home.
Sarver had to leave her job and eventually lost it entirely.
"I would snap into, 'Oh my gosh, what am I going to
do?'" she said. "'My life has stopped.'"
Sarver's doctors performed surgery to remove her
gallbladder, which sometimes alleviates pancreatitis, but it didn't work. That
was when Sarver realized it was time for the surgery she had previously
avoided. She didn't want to live another year, let alone the rest of her life,
with chronic pancreatitis.
The surgery took eight hours and required her to stay at the
hospital for 18 days in December 2012, but she says it was worth it.
"I feel like I've been given a gift, honestly,"
she said. "Another chance at life."
Less than two months after the surgery, Sarver plans to
celebrate her 25th birthday on Sunday by eating cake. After progressing from
broth to soft foods to stir fry to pizza, her only remaining hurdle is to
reincorporate meat into her diet. The pain is gone.
"It's rare that you actually see the dramatic impact in
quality of life as you do with this operation," said Dr. Martin Makary,
the surgical director of the Pancreatic Islet Cell Autotransplantation Program
at Hopkins. "We've seen people who go on to have normal lives – no pain –
and go pack to eating food for the first time in years."
The causes of chronic pancreatitis are not fully understood,
Makary said. Sometimes it can arise from alcohol abuse, but other times it can
come from a rare scorpion sting. In many cases, like Sarver's, the cause is not
known.
"A lot of these patients are told nothing can be
done," Makary said. "They're ping-ponged from office to office,
doctor to doctor. They're just given pain medication sometimes, but, of course,
pain medication masks and doesn't treat the problem."
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."
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."
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