Rare procedure offers relief to patient dealing with endless stomach pain (2024)

By Jenna Clark Embrey

In the fall of 2020, Tim Violet found himself with relentless stomach pain. He quickly sought medical attention, but was unable to get a diagnosis.

By September 2021, the pain had become unbearable, despite having seen multiple physicians.

"People in my local area didn't know how to help me," the Ohioan recalled. "I couldn't work. I couldn't do anything. I was bedridden for months."

Despite persistent agony, diagnosis remained elusive. Clinic after clinic, the 46-year-old was handed pain medications and sent away without answers. Months passed, and his weight plummeted from 210 pounds to 143 pounds as he struggled to eat amid abdominal agony.

He traveled to a larger clinic in his area, where he finally received a diagnosis: chronic pancreatitis. And he was told that there was nothing that could be done to help him.

“It was a rough trip. I felt every bump in the road. We stopped almost every hour because I couldn't take the pain. I ended up in the ER in West Virginia on the way,” Tim said.

But when he arrived in Richmond, calm washed over him. There at Hume-Lee Transplant Center, he quickly got the answer he’d been hoping to hear: “We can help you.”

“I came to terms with the Lord that this was a last resort, and if it didn't work, I would pass. I literally was practicing my goodbyes,” he said. “I was really at death’s door.”

That door, though, would remain closed. Tim was on his way to receiving the Total Pancreatectomy with Auto Islet Cell Transplantation (TP-IAT) surgery.

Hume-Lee is one of few centers in the nation to offer this rare procedure that involves both the operating room and a nearby VCU Health laboratory. The surgery removes the entire pancreas and isolates the insulin-producing islet cells within the organ. Islet cells ensure the body can maintain blood-sugar control.

At the VCU Hume-Lee Transplant Center’s Pancreatic Islet Cell Transplant Lab, a team extracts and purifies the islet cells and returns them to the surgeons — a process that can take up to eight hours. Surgeons relocate the islets to the patient’s liver through a major blood vessel that supplies blood to the organ. There, the islet cells begin producing insulin as they normally would.

The surgery is often the last and best hope for patients suffering from the debilitating symptoms of chronic pancreatitis, brought about when the pancreas becomes inflamed for various reasons, causing pain and scarring. Symptoms include crushing pain when eating or drinking, weight loss and more. Those living with it say it is constant misery.

“Traditionally, TP-IAT has only been for patients who are at the end of the road with the maximum medical management, and there’s no other treatment option left,” said Aamir Khan, M.D., medical director of the Islet Cell Transplant Program. “These days, the paradigm has shifted more from offering it as a last resort to trying to do it earlier in the disease process so that quality of life is not impacted as much. But it’s still a big procedure and we try to do it once all other medical management has been tried.”

Despite the significant hurdles posed by the complex and costly surgical procedure, Hume-Lee's care team stood by Tim's side.

Many insurers aren’t aware of the TP-IAT procedure, so companies often require a detailed explanation from the patient’s medical team.

Tami Topalu, transplant financial coordinator with Hume-Lee, spearheaded the navigation of complex insurance approvals.

“We are always willing to provide what’s known as a ‘peer-to-peer’ — where physicians from our side speak to the insurance company’s own medical team to help them understand the process, and in doing so, we can very often get the procedure authorized,” Topalu said. Out-of-pocket costs (co-pays and deductibles) vary based on the individual patient’s coverage terms.

Through close collaboration with Tim's insurer, Topalu succeeded in having the procedure authorized in June 2022. By that point, Tim was struggling significantly, and his quality of life was decreasing. He was unable to eat, receiving nutrients and pain medications via feeding tube.

“The whole staff is amazing," he said. “If I can help get even one person to Virginia to have that surgery, it will be worth it.”

Tim knows there is a whole team of people who worked on his case, many of whom he never got to meet or thank personally. He is extremely grateful to Hume-Lee Transplant Center, particularly his surgeon, Marlon Levy, M.D., who today serves as the interim CEO of the VCU Health System.

“I would love to see some names and faces that helped me so I can thank them. God worked it out and used the VCU Health team to get it done,” said Tim, crediting the nurses and Levy. “I’ve never met a man like [Levy] in my life. I wish I lived closer so that I could give him a hug and thank him. He not only saved my life, but he was also my outlet when I was dying, and no one gave me hope.”

Lyndy Johnson, R.N., TP-IAT senior transplant coordinator at Hume-Lee who helped Tim along the journey, says the transplant center places a commitment to enhancing chronic pancreatitis patients’ quality of life. The team does everything within their reach to make the surgery possible for those in need.

"By prioritizing the relief that patients can receive from TP-IAT, VCU Health has become known as a center for this complex surgery," she said. "We want our patients to be able to get back to work, back to family — all without the burden of the pain of pancreatitis."

Topalu, who has been with VCU Health since 1987, echoes that sentiment.

"It's this deep sense of empathy and care for every patient that has kept me here for so many years," she said. "At VCU Health, we're not just healthcare providers; we're advocates for healing and hope, and I'm honored to be part of a community that prioritizes patient well-being above all else."

VCU Health Hume-Lee Transplant Center completes 100th rare procedure to treat chronic pancreatitis

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