“You’re Never Alone”

Matthew Miller came to Cleveland for a new liver and ended up finding a new home.

After a long battle with liver disease and a successful transplant surgery at Cleveland Clinic, the Pittsburgh native accepted a local job and settled into Shaker Heights with his wife, Lisa Vegas.

Moving to one’s transplant city is more common than you might expect. Miller, 57, was in Cleveland for nearly two years undergoing tests and treatments and awaiting his new liver, Lisa by his side. By the time he received his lifesaving organ, her hometown had come to feel like his.

“An organ transplant is a journey,” said Miller, adding that it is a journey led by the patient’s caregiver, typically a parent or a spouse. “It’s not a scheduled surgery. It’s life altering.”

Having survived the transplant odyssey, Matthew Miller and Lisa Vegas are now sharing their insight with the thousands who will follow their path. They have founded a mentoring program for transplant caregivers, “You’re Never Alone,” and are helping write the guidebook for transplant caregivers, while also volunteering at the Transplant House of Cleveland.

Along the way, they are helping Cleveland grow into its role as a major transplant mecca – a city where “transplant warrior families,” as Miller calls them, are a growing class of visitor.

Thanks partly to increases in organ donations, more people are having organ transplants. Surgeons performed 33,000 transplants in the U.S. last year, the most ever, according to the United Network for Organ Sharing.

As only four percent of the nation’s medical centers field transplant programs, patients must often travel far for the complex care. Many are coming to Cleveland.

Cleveland Clinic surgeons performed 499 organ transplants in 2016, the fifth most in the nation. Add in blood and marrow transplants, and Cleveland Clinic is performing more than 600 transplants a year.

Unimaginable experience

Surgeons must transplant an organ within hours of it being procured, so patients on a donor list need to be close by. They are often sick, even at death’s door, and enduring an experience they never imagined.

That was the case with Matthew Miller.

An outgoing, robust man who once flew B-52 bombers for the Air Force, Miller had been feeling unusually tired for some time, but he ignored the symptoms. He thought he could tough it out.

Then, in January of 2014, he ended up in an emergency room, where he was diagnosed with late stage liver disease.

A friend and doctor at the University of Pittsburgh Medical Center, where Miller worked as a technology consultant, advised he go to Cleveland Clinic, which has one of the largest hepatology programs in the nation.

So began his medical journey. After an eight-month series of treatments, doctors delivered the grim news. His damaged liver was not regenerating. His only hope was a transplant.

“That was a pretty big jolt,” Miller said.

He was engaged to Lisa Vegas, a professional ballroom dancer from Shaker Heights. Her reaction to his illness was to move up the wedding date. They married in November of 2014—the same month Miller was placed on the national liver transplant waiting list—and the couple moved into her Shaker Heights home.

His new wife would become his cheerleader, his coach and, eventually, his full-time caregiver.

“A patient waiting for an organ cannot do it by themselves,” Miller said he quickly learned. “They’re too sick. Too afraid. Too everything.”

The couple shared their story on a recent afternoon at Transplant House of Cleveland, a young nonprofit in University Circle that offers budget lodging in modest, row house-style apartments, in addition to support and camaraderie for transplant patients and their caregivers. Although they did not stay there, Matthew Miller and Lisa Vegas saw how helpful it is to transplant families. They now rank among its most active volunteers.

Miller would be hospitalized 16 times during the 18-month battle with liver disease and their seven month-wait for a liver, lose much of his strength and watch his skin grow gray and yellow. He developed hepatic encephalopathy, which caused lapses in thinking skills.

“It became my job, I felt, to be Matthew’s advocate,” Lisa Vegas said. “It was my job to know exactly what was going on, to track the medication, to know the expectations.”

Finally, on April 13, 2015, a healthy liver from a recently-deceased young man was a match. Cleveland Clinic surgeon Koji Hashimoto, M.D., performed the 10-hour operation. Miller recalls awaking a new man.

“I could feel a difference in myself immediately,” he said. “When I came around, I knew I had a transplant. I could think clearly!”

Ready to return to work, Miller weighed job offers with medical centers in New York and Houston before accepting a business development position with BioEnterprise, a Cleveland economic development agency focused on medical technology.

He was swayed by his new fondness for Cleveland, he said, but also by his commitment to a new crusade. “You’re Never Alone” quickly went from vision to reality.

The incident that gave their program its name occurred one night in a hospital room, when he awoke scared and confused. There by his side was Lisa, holding his hand. At that point, he said softly, “I realized I was not alone. But she was.”

He was never alone

Monday mornings often find Lisa Vegas at the Transplant Center on the main campus of Cleveland Clinic, addressing a group of anxious strangers. As part of the transplant process, patients undergo a rigorous medical evaluation that spans several days. Lisa Vegas, often accompanied by her husband, enriches that preparation with the caregiver perspective.

She started Coffee with Caregivers at Transplant House, to talk about things the caregivers cannot or will not discuss in front of the patients.

“Our job is to tell people, ‘It’s a long, arduous journey, but we came through and so can you,’” Lisa Vegas said.

That new input is welcomed by transplant surgeons.

“It’s a great idea because patient support is such a critical factor,” said Kareem Abu-Elmadg, M.D., Ph.D., director of the Transplant Center at Cleveland Clinic. “So many of our patients come from outside the Cleveland area and they need someone with them.”

To support Transplant House and “You’re Never Alone,” the couple is planning a Dancing with the Stars-style fundraiser. “A Second Dance at Life” will match professional dancers with local celebrities in a fun competition April 21st at the Tudor Arms Hotel.

Matthew Miller and Lisa Vegas intend to dance, probably harder than anyone.