Halting chronic pancreatitis with TP-IAT
New Mexico nurse travels 1,800 miles to Hume-Lee, a national leader in the complex surgery.July 07, 2021
In near constant abdominal pain near her hometown of Albuquerque, N.M., Julie Graham didn’t know where to turn.
The feeling was new. As a nurse, she had always provided her patients with the best care possible. Yet doctors from across the state couldn’t do the same for her.
Her story began in 2019. Julie was hospitalized for seven weeks and diagnosed with chronic pancreatitis. After discharge her condition worsened and she was a regular in the ER. She lost three jobs over the course of a year because of her lengthy hospital stays. Her condition was taking more than a physical toll. She slipped into a depression.
Her doctors said she’d have to live with the condition. “How could somebody live with it? Every time I ate, I was in so much pain,” she recalled.
Julie was fed through an IV to prevent the pain she experienced when eating. But the pain remained. Surely someone, somewhere, should be able to help, she thought.
Web story leads Julie to VCU Health
One evening Julie’s husband found a story on the web of Jolie Dunham, an opera singer whose pancreatitis journey was remarkably similar to Julie’s. They reached out to Jolie, who had been treated at VCU Health. Jolie connected them to a chronic pancreatitis Facebook group.
“I started reading about these people, and their stories were just like mine,” Julie related.
Finally, there was hope. After browsing the threads, she posted a question: “Where should I go for treatment?”
The prevailing answer? Dr. Marlon Levy, transplant surgeon and director of VCU Health’s Hume-Lee Transplant Center. Levy is one of America’s leading experts in total pancreatectomy with islet cell autotransplantation (TP-IAT), a complex procedure for patients whose chronic pancreatitis hasn’t responded to normal treatment.
Julie’s inner nurse took over. She sought to find out everything she could about TP-IAT. If it were the right procedure for her, how would she travel 1,800 miles? Would her insurance cover it?
That’s when she hit a barrier. Her insurance provider wouldn’t pay for the surgery if it took place in Virginia. Undeterred, she figured it couldn’t hurt to email Levy. “Why not?”, she thought.
It was a Sunday afternoon. She expected her note to go into a black hole, never to be seen again. But within a half hour, Levy himself responded. He wanted to talk the next day. “I was floored,” Julie said.
No obstacles permitted
Julie was quickly identified as an ideal candidate for TP-IAT. But when VCU Health contacted her insurance provider, it hit the same roadblocks Julie did. The team persisted, though.
“Every time there was an insurance issue — boom — VCU would take care of it,” Julie said.
After weeks of virtual visits, consultations, calls to insurance companies and even the involvement of a judge, Julie’s insurer agreed to pay for everything: the TP-IAT treatment, travel expenses for her and her husband, and her recovery.
Eleven days after getting the OK, Julie and her husband were in Richmond.
“When we find a patient like Julie whose life we know will improve with TP-IAT, we are going to do all we can to get that person to VCU for the care they need,” Levy said. “This is a life-changing procedure for so many patients with chronic pancreatitis, and our outcomes are excellent. So when the opportunity arises for a patient to receive this treatment, we don’t let anything stand in our way.”
Care so complex, it sounds like science fiction
With total pancreatectomy with islet cell autotransplantation, the diseased pancreas is removed and the islet cell clusters placed in the patient’s liver. There, the islet cells continue to produce insulin and maintain adequate blood sugar levels. The complex surgery takes about 12 hours.
Patients from around the U.S. travel to Hume-Lee for TP-IAT. Hume-Lee is recognized by the National Pancreas Foundation as a destination specialty care center for chronic pancreatitis.
The right care, with the right team
The procedure was a life changer, Julie said. “I can eat whatever I want. I don’t have that pain anymore. I was having related health issues before, and now everything is gone.”
Her advice to others with chronic pancreatitis? “There are only a few hospitals in the U.S. that actually do this procedure,” she said. “I would go through Dr. Levy. I can’t say enough good things about him and the entire VCU team.”