A Tale of Two Triumphs

Benny, Dr. Williams and their families meet for the first time following their operations and recovery. The two are close friends to this day. Photo by Stephen Legendre.

By Topher Balfer

Though they are separated by hundreds of miles and, until a few years ago, had never met or heard each other’s names, the lives of Dr. Charles Williams and Benny Capagnano are inextricably linked — by shared challenges, shared triumphs and, most significantly, by an unprecedented operation.

Together, Dr. Williams and Benny were part of a domino liver transplant. This rare medical procedure is performed when a liver needs to be replaced in one patient but may still be functional for another. Even more astounding is the fact that, while Dr. Williams was both donating his own liver and receiving a new one, he simultaneously received a new heart.

There was simply no precedent for a multiorgan domino transplant at Ochsner, but thanks to the innovation and collaboration of both patients’ care teams, this incredible operation was not just imagined — it was made a reality, and Dr. Williams and Benny are alive today because of it.

For Dr. Charles Williams, who retired from the Air Force in 2012 after more than 36 years as an orthopedic surgeon, the trouble began with shortness of breath.

He made an appointment with his primary care doctor in Bluewater Bay, Florida, hoping to ease his concerns that something more serious was happening. He didn’t find the comfort he was looking for, an X-ray showed that Dr. Williams had an enlarged heart.

Since the cause was a mystery, Dr. Williams didn’t exhibit any of the problems typical for heart disease, his primary physician concluded that this was likely a case of post-viral cardiomyopathy, which can occur when a virus like the flu or an upper respiratory infection makes its way to the heart.

“For the next year, my doctor put me on cardiac medicines, diuretics and diet restrictions, everything else you would do to stabilize a congestive heart failure patient, but I kept getting worse,” Dr. Williams said. “After about a year, he was getting really concerned that I wasn’t staying stable despite what he was doing for me. So that’s when he sent me to Ochsner, to have their heart transplant doctors look at me in case he was missing something.”

The doctors at Ochsner agreed with the previous assessment, that they were likely looking at a case of postviral cardiomyopathy, but they also had another theory: that Dr. Williams was suffering from amyloidosis.

Amyloidosis is the buildup of abnormal proteins around tissues and organs, which can cause severe peripheral neuropathy and, ultimately, organ failure. Tests revealed that Dr. Williams had a rare hereditary form of amyloidosis, which was causing a protein buildup around his heart. Because he had been adopted at birth and never knew his biological family, the revelation was shocking.

“We knew from research that once you’re given a diagnosis of hereditary ATTR, you only have two or three years left to live,” Dr. Williams said. “I knew there was nothing to treat with, other than a transplant, and I knew that even when you’re put on the list for a transplant, most people die waiting for a heart.”

Dr. Williams spent the next several months preparing for the worst-case scenario, and by August 2018, it seemed to have arrived. Unable to sleep, he spent most nights lying in bed, consciously willing himself to breathe in and breathe out again; he says that without deliberate effort, he knew he would likely stop breathing in his sleep.

Exhaustion was setting in, and Dr. Williams was ready for a resolution — whatever that might be.

Meanwhile, Benny Capagnano was in the midst of his own health struggles, the culmination of a years-long battle with addiction.

“I got caught up in a little bit of drinking, but mostly drugs that made me not feel,” Benny said. “And that’s what my ultimate goal was — to not feel.”

Benny had violated his probation and spent several years living in hiding before deciding to turn himself in. Once in police custody, he said got down on his knees and prayed for the chance to make things right.

“I just said to God, ‘Just stick with me, stay with me while all this goes through, and when I’m done with it, I’ll get clean,’” Benny said.

That was on a Tuesday night. The next afternoon, he was called out of his cell, brought in front of the magistrate, and informed that the state of Louisiana had dropped all charges against him. Benny was released from jail on Thursday and, sticking to the promise he’d made himself, was in rehab by Friday.

“My life was trash before that,” Benny said. “I had abused my body and I was in active addiction for 25 years. I hurt so many people. And I had this opportunity. It was the biggest wakeup call of my life.”

Benny had made the choice to turn his life around, but even once he was clean, he was still suffering from the effects of addiction. He started experiencing stomach and chest pains and, thinking he was having a heart attack, checked into Ochsner.

“That’s when they discovered my liver was in bad shape,” Benny said. “I had been in and out of the hospital with various symptoms, mostly with my heart and my stomach. It was just baffling. I had no idea what was going on, so that four-day stay at Ochsner informed me that I had Hepatitis C, and I had cirrhosis, and I was in need of a liver transplant.”

It’s easy for Dr. Williams to imagine a world in which he didn’t stop his wife from leaving for the grocery store on August 31, 2018. It’s a world without him, where his story ends early.

Still at home in Florida awaiting news about his transplant, his condition was worsening, and that day, he was having more trouble breathing than ever before. His wife, Gwen, had just informed him that she and their son were leaving for about 45 minutes and would be right back.

Looking back, Dr. Williams doesn’t think he could have waited that long.

“She left the room and a voice came to me and said, ‘Stop them from going,’” Dr. Williams said. “It took me quite a bit to get from my bedroom into the hallway. I had to stop several times to catch my breath. But I finally got to the entryway and I called out to Gwen just as she was going out the door, getting ready to pull it shut behind her.

“That’s when I said, ‘Gwen, change of plans. You guys are going to take me to the emergency room. And I’m not coming back home.’”

Once at the emergency room, doctors arranged for Dr. Williams to immediately be transferred to Ochsner. Under the care of Ochsner Surgical Director, Dr. Aditya Bansal, Dr. Williams was stabilized, but there was still a long road to getting a new heart.

“Dr. Williams was very sick and very debilitated,” said Dr. Bansal. “We could not get him the transplant right away, so we really worked hard to get him physical therapy, improved his nutrition and made him walk every day. I would find him walking every afternoon as I was making my rounds, and we’d talk for a few minutes to keep him positive. So, he really worked hard and turned around big time.”

Around this time, Dr. Bansal began to worry that the heart transplant wouldn’t be enough. Because the dangerous amyloid protein originated in Dr. Williams’ liver, there was always a risk that further build up would occur around a new heart. It seemed that the best option to prevent any further issues would be to perform a multiorgan transplant, which brought Dr. John Seal, liver transplant specialist, onto Dr. Williams’ care team.

“The concern when you go to do a heart transplant is to figure out if amyloidosis is going to be a problem in a new transplant down the road, or if it’s going to continue to accumulate in other tissues,” said Dr. Seal. “That’s how we ended up deciding that Dr. Williams would benefit from a combined heart and liver transplant. Replacing the liver basically stops the ongoing process of amyloidosis; it doesn’t reverse it, but it would prevent the progression of his other symptoms.”

There was a precedent for multiorgan transplants at Ochsner already, and both Dr. Seal and Dr. Bansal said that it’s not uncommon for different caregivers to come together and collaborate on new and innovative solutions. It’s that interconnectivity that led to the decision to perform a dual transplant in the first place, and once united, Dr. Bansal said they took their collaboration even further than that. Functioning as “a well-oiled machine,” an environment he says is unique to Ochsner, the teams began looking for a way to save more than just Dr. Williams’ life.

“We started thinking outside the box. We started pushing the envelope,” said Dr. Bansal. “We said, ‘You know what? We can’t do just the heart transplant because of this factor. But wait a second, can we do a heart and a liver? Okay, we do a heart and a liver — but wait a second, can this liver work in somebody else?’”

It turned out that Dr. Williams’ liver could work in someone else — particularly, an older patient, who would be less likely to suffer from amyloidosis, which can take decades to manifest any symptoms. And there was a patient who fit the bill exactly.

The operations happened just a few rooms apart: in one room was Dr. Williams, about to receive a new liver and a new heart. In the other room, Benny was preparing to receive Dr. Williams’ liver, which was not fit for its original body, but which was a perfect match for him.

It took twelve hours, but both operations were successful.

"When my eyes opened, I was looking at the ceiling," said Benny. "I remember saying, 'I made it.' And I thank God for it."

Dr. Williams reacted in much the same way when he finally woke up. He opened his eyes after three days of intubation to find his wife, Gwen, sitting beside him. She had never left his side.

“I immediately started talking out loud, and all that came out of my mouth at that point was praising God, and thanking God,” Dr. Williams said.

Since that day, life has changed in every conceivable way for Benny and Dr. Williams. Against all odds, they each received another chance at life, and both of them are trying to make the most of it. For his part, Dr. Williams feels it’s his calling to share his experience with the world, whenever asked.

“That’s why I’m here,” he said. “Whether it was the Holy Spirit speaking to me, or encouraging me that whole time, I realized I’m doing God’s will just by being alive today. This is why He saved me and brought me through this, so I can give my testimony. And I’m doing it every day.”

On the other side of addiction, Benny feels extremely blessed and is taking whatever steps he can to give back to the community. Right now, he finds comfort in fostering dogs at the home he shares with his cousin, making sure they feel loved and safe until they find their forever homes.

And, even better, both Benny and Dr. Williams have formed a friendship that will last a lifetime. They shared their emotional first meeting at Ochsner just a few months after the operation and were even honored by the New Orleans Saints — along with Dr. Bansal and Dr. Seal — as Ochsner Heroes of the Game in November 2019.

It has been a long journey for both of them — but things are finally looking up, and they each plan to make the most of the opportunity their doctors have given them.

“All the Ochsner doctors and nurses are very talented, and God worked through them,” Benny said. “They saved my life. They would never know how much I appreciate and love them for doing this for me and for my donor. It’s still overwhelming to think about…but it’s been amazing.”

If you would like to support innovations in transplant please contact Lauren Phipps at lauren.phipps@ ochsner.org.