Baseball coach, church worship leader, family man, full-time professional.
For years, Steve Lawyer happily held many roles in his personal and professional life. But in 2004, the sudden onset of excruciating and inexplicable pain—agony that left Steve doubled over after meals—threatened to take all of those titles away.
At first, Steve’s doctors thought his pain was the result of indigestion or acid reflux. But as the pain continued over months and years, it became clear that Steve’s medical condition was the product of chronic pancreatitis, a complex, life-altering disease. Until Steve and his family came to University of Minnesota Medical Center, they were at a loss for a lasting solution.
“I was in bed 90 percent of the time. I lost two to three jobs. I was in and out of hospital,” Steve said.
Steve, his wife Mindy and their three sons were on a road trip to visit family when the excruciating pain struck for the first time. Steve was driving and remembers the episode with great detail.
“All of sudden I got to the point where I couldn’t breathe. I had chest pain and was sore in my arms. I felt like I was having a heart attack,” Steve said.
He quickly pulled the car over. Mindy, sleeping in the passenger seat, woke up and asked him what was wrong.
“I think I need to get to a hospital,” Steve said.
Steve and Mindy rushed to the nearest hospital in Rochester, N.Y. But days later, perplexed doctors released Steve with acid reduction medication to control what they believed was indigestion or acid reflux.
After the first episode, the flare-ups continued like clockwork. They would often strike following Steve’s meals. The chest pain and nausea became so bad, the smell of food lost its appeal to Steve. His difficulties also extended far past the dinner table. The unpredictable pain often kept Steve bedridden, which prevented him from taking his sons camping or participating in family trips. Steve lost several jobs after employers became frustrated with his inexplicable health issues.
Searching for answers
During this time, Steve’s gastrointestinal specialist in Louisville, Ky., recommended another acid reducer, and then scheduled surgery to remove his gall bladder. When that failed to resolve the pain, the specialist recommended another surgery on one of Steve’s stomach valves. After each of these procedures, Steve’s pain would return, leaving him unable to enjoy life.
Finally, Steve and Mindy decided to get a second opinion at Vanderbilt University Medical Center in Nashville, Tenn. Doctors there diagnosed Steve with pancreatitis—or inflammation of the pancreas. Steve was put on “gut rest” for two weeks to allow the pancreas to heal. Rather than eating solid food, Steve’s nutrition was administered through an IV.
The gut rest helped, but the pancreatitis returned as soon as Steve left the hospital. For years, he shuttled back and forth 130 miles to Vanderbilt, where he stayed for weeks at a time before being released. Eventually, doctors inserted a central line port to give him the nutrition he needed and upgraded his diagnosis to chronic pancreatitis. Doctors then suggested he receive an intrathecal pain pump for daily morphine administration, to help offset the extreme daily pain.
In 2007, doctors removed portions of Steve’s pancreas, small intestine and stomach during a “Whipple” procedure. He lost 50 pounds during the difficult recovery. When even that failed to end the pain and nausea, a physician told Steve words no 41-year-old wants to hear: You will have to find coping mechanisms to deal with the daily pain, because you will live for the rest of your life like this.
Surely this wasn’t the end of the road, Steve and Mindy wondered.
Mindy dove into online research, which led her to Louise Berry, the transplant coordinator for the University of Minnesota’s Total Pancreatectomy and Islet Auto-Transplant Program (TP-IAT).
“We were blown away by how sympathetic she was,” Mindy said.“She understood his situation and suggested that he come for evaluation because University of Minnesota Medical Center might be able to offer him a chance at a better quality of life."
After consultations with his entire transplant care team, Steve was approved for the TP-IAT surgery, and his procedure was scheduled on Dec. 9, 2013.
During the 11-hour surgery, Steve’s care team removed the remainder of his pancreas, and his spleen and duodenum. Specialists then extracted the pancreas’ insulin-producing islet cells and transplanted those cells back into his liver in an attempt to prevent the development of diabetes, which otherwise occurs when the pancreas is removed. The surgery, performed by Transplant Surgeon Timothy Pruett, MD, was a success, and Steve returned home six weeks after recovery.
One year later, Steve has entered a new chapter of his life.
”Being able to eat, and knowing that I won’t get sick afterward is one of the biggest things,” Steve said. Thanks to the surgery, Steve is off his pain and nausea meds and is on a monthly regimen to get his pain pump reduced. He can now plan outings, run errands and attending baseball games with his son. He hopes to re-enter the workforce as a full-time professional.
“We cannot praise University of Minnesota Health enough. They were our family when we were 1,300 miles away from our family and they will forever be a part of our life,” Mindy said.