Pancreatectomy patient counts her blessings for winding path that brought her to MUSC

Becky Miller feels blessed to have the life she does – mom to a 4-year-old girl, pastor’s wife who teaches Sunday school and helps with the Mothers of Preschoolers group, devoted daughter who can visit her parents regularly. 

Six years ago it seemed like a life she would never have.

Miller suffered from pancreatitis, an extremely painful condition in which digestive enzymes that are supposed to be released into the small intestine instead become trapped in the pancreas. Soon, they begin to damage that organ. But it took months of excruciating pain, escalating medications and multiple hospitalizations before she got a diagnosis.

She had been on the verge of scheduling a major surgery that might help her pain when, after months on disability leave, she lost her job. Her husband, Jack, had a temporary, part-time church position without health benefits. So when he was offered a full-time pastorate, he felt compelled to accept it even though it meant leaving their home state of Pennsylvania and everyone and everything they knew and moving to a place where they were strangers – Beaufort, South Carolina.

As they looked into local hospitals, Jack stumbled across the Medical University of South Carolina, an institution they had never heard of but that turned out to be one of the leading centers for performing total pancreatectomies with islet cell autotransplantation, the very surgery she had been about to schedule.

“It felt divine – that we were meant to move here,” Miller says now.

In a healthy pancreas, islet cells produce hormones including insulin, which helps regulate blood sugar. For chronic pancreatitis, medical management is the first option, said Kelsey Cook, R.N., islet cell transplant program coordinator at MUSC Health.

When it becomes clear that medical management isn’t enough, particularly for people with genetic defects, then removal of the pancreas – a total pancreatectomy – becomes an option. But a person without a pancreas is destined to become diabetic. Therefore, after the pancreatectomy, islet cells are isolated and removed from the pancreas and transplanted into the patient’s liver to begin producing insulin again. This procedure can prevent the patient from becoming diabetic, or at least lessen the need to inject insulin.

The process of removing the islet cells requires a clean room facility. There are only 39 of those in the U.S., not all of which perform islet isolations. MUSC’s Center for Cellular Therapy is one. The center is an FDA cGMP-registered facility that has been recognized by the Foundation for the Accreditation of Cellular Therapy to exceed standards in patient care and lab practices.

 

MUSC Health has been performing total pancreatectomies with islet cell autotransplantation since 2009 at a rate of 20 to 25 per year, Cook said, making it the second busiest islet cell transplant program in the world. Patients come from across the country to have the procedure, though the majority are from the Southeast region.

Gastrointestinal surgeon Katherine Morgan, M.D., originated the program in 2009. Her partner, David Adams, M.D., performed the surgery and cared for Miller in 2013. Adams retired from the hepatobiliary pancreatic team in 2018. His successor, William P. Lancaster, M.D., started in 2017 and has been performing the surgery along with Morgan since then.

Miller says she received excellent medical care. But just as important, she says, is the way she was treated – like a human being. From her doctors to the people who cleaned her room and brought food, everyone was kind and concerned about her well-being, she says. “I wasn’t treated like a number or a lab rat. The doctors asked how I was doing, not just my glucose level.” A food server even remembered her by name and asked after her mother when they ran into each other in Ashley River Tower several months after Miller’s surgery, she remembers.

Miller says she wanted to share her gratitude not just with her care team but with MUSC leaders who laid the foundation for the emphasis on compassionate care.

“It is noticed. It makes a tremendous difference,” she says.

By the time Miller arrived in South Carolina, she was something of a hospital connoisseur. She had spent time in small community hospitals and renowned academic medical centers, not to mention doctor’s offices and an acupuncturist’s office. Unfortunately, the majority of her experiences had left her with a strong distaste for the manner in which medicine is often practiced.

Her hospitalizations started in college, when she had her appendix and gallbladder removed. At the time, the surgeon told her he thought something else was going on, but he couldn’t determine the underlying problem.

From then on, Miller ended up in the emergency department once or twice a year with digestive problems, but her issues weren’t so severe that they completely disrupted her life.

That changed in September 2011. That was when a stabbing pain that would crumple her began to strike. It was also when the merry-go-round of hospitalizations, procedures and medications began. At one point, she even had a PICC line, a catheter that was inserted intravenously so as to bypass the digestive system and deliver nutrients directly to her bloodstream. During this time, she learned that hers was a genetic mutation, meaning her pancreas had been slowly degrading since birth.

So when she showed up for her first MUSC Health appointment, Miller was familiar with the hospital routine. Still, she was continually amazed and thankful for how staff strived to make things easier, even with simple tasks like scheduling several appointments on the same day so she didn’t have to make multiple trips from Beaufort. She was grateful that Adams considered quality of life an important factor, not just some warm and fuzzy buzzword, and that the care team aggressively managed her pain after surgery rather than leaving her to suffer. MUSC’s approach was so patient-centered that even her parents and sister noticed a difference from other facilities, she said.

Miller jokes now that she’s a walking advertisement for MUSC Health.

“Hopefully you never need it. Hopefully you don’t have health issues. But if you do, MUSC is the place to go,” she says. “Even when I fly from Baltimore to Charleston and I’m sitting next to someone I say, ‘If you get sick, go to MUSC.’”

“I feel grateful for those experiences so that I can pray for those people, encourage those people, pass on hope. I still don’t have all the answers by any stretch, and I don’t pretend to be a spokesperson for God. I just want people to know there’s hope.”

Becky Miller

Miller had her surgery in January 2013. Though the family returned to Pennsylvania in 2018, she still returns to MUSC Health for annual follow-ups, and her current doctors keep in touch with MUSC’s specialists – most doctors look at her in horror when they realize she doesn’t have a pancreas, she laughed.

The entire experience tested Miller’s faith. She’s thankful that Jack stood by her side and never gave pat answers when she asked unanswerable questions. She’s even thankful for his quirks, like his obsession with cleanliness, which came in handy when she had the PICC line.

“I would definitely say my faith grew, and I like to think I am less white-knuckled,” she says. A planner by nature, she had to learn to let go. She’s also developed more empathy for people in difficult circumstances, whether it be poor health, a lost job, withdrawal from narcotics or a dream unfulfilled.

“I feel grateful for those experiences so that I can pray for those people, encourage those people, pass on hope,” she says. “I still don’t have all the answers by any stretch, and I don’t pretend to be a spokesperson for God. I just want people to know there’s hope.”

Miller says she still tires easily and must nap each day. The fatigue is a result of her digestive system not absorbing as many nutrients as an intact system would. She also has an insulin pump, because over time the islet cells slowed down their production of insulin. Cook said that 90% of patients will have functional islet cells after surgery.

But the key to Miller’s quality of life is that she doesn’t suffer from the horrible pain she had with pancreatitis.

In 2016, the Millers’ daughter, Amarissa, was placed with them. The name, she says, means “promised by God.”

Now resettled in Pennsylvania and busy with motherhood and the church, Miller says her medical odyssey feels like another life.

She recently published a memoir that chronicles her medical and faith journey, “Transplanting Hope: A Journey Through Pain, Addiction, and the Miracle of a Rare Surgical Procedure.” She also speaks about her experiences at church and community groups.

“My biggest desire is to encourage hope for people who are going through a difficult season,” she says.