Dianna: Advancing Research to Improve the Health of People With Pancreatitis

Dianna is participating in the PROCEED study, which aims to better understand pancreatitis.

On a winter night in Western Pennsylvania 20 years ago, Dianna was at a friend’s house when her stomach suddenly began to hurt. Only a minute later, she was vomiting uncontrollably in the bathroom and experiencing the most excruciating abdominal pain she had ever felt in her life. Her friend’s mother drove her to a local emergency room, where she was told she had the flu. Looking back, Dianna, now a working mother of two in her mid-forties, knows the symptoms she had been experiencing were her first encounter with recurrent acute pancreatitis, which would continue to barrage her pancreas with repeated bouts of painful inflammation. But she had little reason to suspect she had the disease at the time—no one in her family had it, and she had no risk factors that she had been aware of. So, a week and a half after that emergency room visit and with the vomiting under control, she started her new job. She would still feel sore for weeks. “I just pushed through it,” she says with a casual grin and a shrug.

“I get zero warning,” Dianna says of her pancreatitis attacks. “I could be talking to someone, and by the end of our conversation I could be on the way to the emergency room because the pain comes sharp, and I just start vomiting… and off we go.”

Dianna speaks with an entertaining, witty, and wry sense of humor. She has always been good at math and problem solving, talents she uses to design simulators—life-sized replicas of control stations that provide hands-on training for students. They have all the switches, gauges, and warning lights that the real equipment has. “You want [the students] to be trained so they know what to do when a component fails, and how to rectify it,” she says. But pancreatitis episodes do not come with warning lights, and there is no way to prepare for the debilitating pain. If untreated, pancreatitis could lead to organ failure and death. “I get zero warning,” she says. “I could be talking to someone, and by the end of our conversation I could be on the way to the emergency room, because the pain comes sharp, and I just start vomiting… and off we go.”

Close Calls

In August of that same year when Dianna had her first episode, she was visiting her parents when, out of the blue, she began vomiting every hour on the hour, like clockwork. Still unaware of her pancreatitis—and suspecting something less serious like the stomach flu—she decided to wait until the next day to see a doctor. The doctor immediately sent her to a hospital where she waited for 12 hours in a backed-up emergency room. She was severely dehydrated by the time she was admitted, and her kidneys were starting to fail. “They had no idea what was wrong,” she says. “They pulled my mother outside and told her I was dying.”

Eventually the medical staff were able to stabilize her. She was diagnosed with pancreatitis and stayed in the hospital for 11 days while the doctors searched for a cause. An important clue had come in her bloodwork: it was normal except for her triglycerides, which were “sky-high,” she says. A healthy triglyceride level is under 150 milligrams per deciliter (mg/dL); Dianna’s would regularly be well over 1,000 mg/dL—and at times much higher.

Like so many aspects of the disease, the role triglycerides play in pancreatitis is not completely understood. One possibility is that high levels of triglycerides could cause the pancreas to overproduce digestive enzymes. The resulting buildup of these powerful enzymes in the pancreas could lead to permanent damage and other life-threatening complications—including a higher risk for pancreatic cancer—all the while causing painful inflammation in the abdomen.

Dianna’s pancreatitis, she later learned, is caused by three genetic variations in her DNA: one that raises the overall risk of the disease and two that cause high triglycerides. Keeping her triglycerides lower has been a challenge. She tries to limit her diet to low-fat and low-carb foods, and some triglyceride-lowering medicines she’s taken had very serious side effects, including severe depression.

Dianna describes the pain caused by pancreatitis as like a very bad friction burn, but on the inside of the body, and it can last for weeks. “It becomes so severe that you just want to double over, and nothing you do makes it feel any better,” she says. Given the choice, she would prefer the pain from natural childbirth— which she experienced when each of her two sons were born—over the pain from pancreatitis.

The August trip to the hospital was the first time Dianna came close to dying. The second came several years later. This time the hospital was full, and she was directed to a smaller hospital that struggled to get her symptoms under control. While she slipped into unconsciousness, “they worked feverishly to keep me alive,” she says. “As soon I was conscious again, they told my husband and me to say a last word to each other because they weren’t sure if they were going to pull me through.”

She remembers her husband refusing to say goodbye: “He said, ‘I’m not saying it, because you’re making it through this. Because we’re not done. This is not the end.’” With those words, she says, “he really gave me strength.”

The small hospital airlifted Dianna by helicopter to the University of Pittsburgh Medical Center (UPMC), where, luckily, she was able to recover.

Proceeding Through Life with Pancreatitis

At UPMC, Dianna met Dr. Dhiraj Yadav, a gastroenterologist and investigator in NIDDK’s Consortium for the Study of Chronic Pancreatitis, Diabetes, and Pancreatic Cancer, who took her on as a patient. He also encouraged her to participate in one of the Consortium’s major research efforts, Prospective Evaluation of Chronic Pancreatitis for Epidemiologic and Translational Studies (PROCEED), which has thus far collected data on close to 2,000 volunteers to better understand pancreatitis. The study’s ultimate goals are to develop new therapeutic options and create tools to predict how the disease might progress in any individual, which would also help to guide treatment approaches.

Says Dianna about the PROCEED study, which aims to better understand pancreatitis: “I feel like it’s a two-way thing. If something can be learned from me, maybe it’ll turn around and benefit me as well.”

Dianna says her participation in PROCEED is simple: it involves completing an annual questionnaire and giving blood and stool samples. “I found it easy,” she says. “And I feel like it’s a two-way thing. If something can be learned from me, maybe it’ll turn around and benefit me as well.” And, she says, one of her worst fears is that her sons may have inherited the disease. “So, even if it takes 10 years to figure out, maybe it’ll help my kids.”

Dianna’s harrowing experiences with pancreatitis attacks—she’s had 16 of them over the years—have given her a new perspective in life. Her motto has become “laugh, don’t cry,” partly because she always looks for the silver lining in bad situations, and partly because she spent a lot of time in the hospital connected to a feeding tube that went through her nose, which she says can be especially uncomfortable with stuffy sinuses from crying. (She likes to make hospital staff laugh by referring to the medical tubes clinging to her neck as “her jewelry.”) “There are times when crying is very much needed,” she says. “But if you can find something to laugh about first, no matter how small, then you can tap into that feeling of ‘Yes, I can do this!’”

“There are times when crying is very much needed,” Dianna says of her many hospital stays due to pancreatitis. “But if you can find something to laugh about first, no matter how small, then you can tap into that moment of ‘Yes, I can do this!’”

Her friends share her sense of humor. Once, wishing they could give her a new, disease-free pancreas, they presented her with a stuffed plush version instead. “It’s those kinds of things that help,” Dianna says. “Laughter is the better medicine.”

Still, she draws much of her resiliency from within. “Even though it can get depressing, and I’m spending a week or two in the hospital at a time, I bounce back,” she says. “I keep going.”