When a Rare Disease Meets a Relentless Team

With the odds stacked against him, Chris Sheheane found hope in Dr. Gregory Beilman and a care team at the University of Minnesota uniquely equipped to take on his rare and complex condition.

By the time Chris Sheheane arrived at the M Health Fairview Clinics and Surgery Center in Minneapolis, he had spent years battling debilitating pain, confusion, and despair. Diagnosed in 2018 with Multiple Endocrine Neoplasia Type 1 (MEN1), a rare genetic condition that causes tumors in the pituitary, parathyroid, and pancreas, the Alabama native had already undergone multiple surgeries. But it was chronic pancreatitis, a painful symptom of his illness, that left him bedridden and desperate.

“I was in the hospital more than I was out of the hospital,” he recalled. “Basically, for a year I was laying in bed or laying in a hospital, and no one knew what to do with me except try to load me up on pain meds. And I said, ‘No, I can't live my life that way.’”

For Chris, the turning point came after hearing about a highly specialized procedure, total pancreatectomy with islet autotransplantation, that might offer a path to relief. Only a few centers in the country were equipped to perform it, and one name kept rising to the top: Dr. Gregory Beilman at the University of Minnesota and M Health Fairview.

Chris’s first interaction with Dr. Beilman left a lasting impression. “Literally that afternoon he called me from a cell phone,” Chris said. “That blew me out of the water. What doctor does that?”

The surgery was major. Dr. Beilman removed Chris’s pancreas, spleen, appendix, and part of his small intestine, then transplanted islet cells, which are clusters of insulin-producing cells from the pancreas, into his liver. “My liver actually functions as both the pancreas and the liver due to the procedure,” Chris said. “It made me diabetic, but fortunately, about 40% of my islet cells survived.”

The procedure is part of a team-based model of care at M Health Fairview that brings together endocrinologists, psychologists, psychiatrists, nurse coordinators, transplant specialists, and lab scientists. “I humbly believe that we have the best center in the country, if not in the world,” Dr. Beilman said. “We take care of a lot of people with chronic pancreatitis. I’m proud to be one piece of the puzzle.”

Since 2007, the pancreatitis team has met weekly to review patient cases and determine next steps. “We have this whole group of great people who every week spend an extra hour of their week thinking about and coming up with better solutions,” he said.

For Chris, that level of care changed everything. “They help you not only from the physical aspect, they help you with the mental aspect as well,” he said. “It’s a tremendous blessing, and it all starts with Dr. Beilman and Emily, his nurse.”

That support extends far beyond clinical visits. Nurse coordinators Emily Scheidecker and Lucas Kositzka have helped Chris navigate insurance and find housing when he relocated to Minnesota multiple times for care. And when he visits the ER in Alabama, he can call Dr. Beilman directly. “Sometimes at 2 a.m., when I’m in the emergency room, he would pick up the phone and tell the doctors what to do,” Chris said.

Chris spent three weeks in the hospital after his procedure and stayed in Minnesota for months to recover. He’s returned more than once for complications, leaving behind his wife, Dana, and their two children, Wells and Claire, in Birmingham.

“They’re who I fought for every day,” he said. “My kids have never known me healthy, completely healthy. That really hurts.” Dana, he added, “runs 90 miles an hour from the moment she wakes up to the moment she goes to bed. She’s probably the strongest person I’ve ever known.”

Despite ongoing challenges, including abdominal obstructions and blood clots, Chris has something he didn’t have before: hope. “I told Dr. Beilman before the surgery, I said, ‘Look, if you can just give me one year of normal life, I will take it,’” he said. “But in reality, it’s, you know, give me 20 or 30 more years.”

Dr. Beilman said what stands out most is Chris’s attitude. “He is a lovely guy who's been through a lot, who is committed to his health and committed to his family, and committed to getting well,” he said. “I love that about him.”

“Whether I'm in Minnesota or back home, they've been there the whole time. They call and check on me,” Chris said. “It’s truly an amazing place up here. What Dr. Beilman has put together with this team here, and the staff and the facilities, is top notch.”