Man with rare disease on road to recovery after lifesaving heart and vascular surgeries

The nature of the tear, called a dissection, meant the lower part of his body wasn’t getting the blood it needed. A rare connective tissue condition made Jared’s blood vessels weak, likely the cause of the tear in the first place. And a previous heart surgery placed additional risk on any new operation.

It was time to think outside the box.

The team decided on a novel approach. At the site of the dissection, vascular surgeon Bryan Tillman, MD, PhD, would place a stent — a small tube-shaped cage of metal. The goal was to redirect blood flow down the appropriate channel of the vessel and to the legs and lower vital organs.

It worked. Jared was out of the woods.

His aortic arch still needed to be replaced, a surgery that would take place a few weeks later under the care of cardiac surgeon Matthew Henn, MD.

But as Jared regained his strength in the months following that initial scare and repair, he would learn that he’d need another risky procedure.

He’d also learn that it was perhaps one of the most complex surgeries among those performed at The Ohio State University Heart and Vascular Center.

Combined expertise for complicated cases

The hope had been that the remaining aorta would settle down, Dr. Tillman says. But that didn’t happen. Instead, a portion of the vessel, a tube normally the width of a quarter, had expanded to the width of a softball.

Jared again risked rupture. It was time for another huddle.

Through the Aortic Center at the Ohio State Heart and Vascular Center, cardiac and vascular surgery experts come together to treat complex cases like Jared’s, using their combined skills in a joint effort to save high-risk patients.

The program’s experience and access to technology and research allows surgeons to offer hope to people who might otherwise be referred to hospice care, says vascular surgeon Kristine Orion, MD.

“Our patients often are told by multiple other places that they don’t really have a surgical option and there’s nothing that can be done,” Dr. Orion says.

“We’re able to help more patients at Ohio State. We like to push the envelope and try new things.”

In Jared’s case, she strategized with Dr. Henn and Dr. Tillman to come up with a plan they believed was Jared’s best option: replacing his entire aorta.

They were hopeful it would allow Jared to return to the normalcy of his nursing school studies, pick-up basketball games with friends and a planned trip to Disney World with his family.

A planned but serious procedure

This wasn’t a surgery to take lightly. There were Jared’s weak blood vessels and previous surgeries to think about. And this time, surgeons would have to ensure blood flow continued during a procedure that could last upwards of 12 hours. If things went south, Jared could lose his life, experience organ failure or be paralyzed.

After coming this far, the decision wasn’t a difficult one for Jared and his family.

“Our mindset was to get it over with now and not sit and wait for something else to happen,” says Jared, of south-central Ohio. “I would rather have a nice, organized, structured surgery compared to emergency surgery.”

He also felt confident that his medical team was doing the right thing.

“They planned out every step along the way. There were no surprises,” Jared says. “Those three surgeons were amazing. I felt cared for, I felt like a focused patient and I felt like I was going to get the best care regardless of anything else.”

The surgery was scheduled for August 2024.

The words he had feared

Jared had been managing his Marfan syndrome for years with the help of Curt Daniels, MD, and The Ohio State University Wexner Medical Center’s Adult Congenital Heart Disease (ACHD) team. So he had known, eight months earlier, that something wasn’t right when a pain shot up his back as he watched a movie just a few days before Christmas.

After a scan of his heart at an emergency department, a doctor had told him, “aortic dissection,” the medical term for that tear between the layers of his aorta’s wall.

It was a moment Jared and his parents had feared since he was 6 years old and diagnosed with the genetic disorder, which affects the connective tissue that provides structural support throughout the body.

Marfan syndrome had limited Jared’s activities when he was young. He couldn’t play football; he’d had to quit basketball as a teen.

When he was 13, congenital cardiac surgeon Patrick McConnell, MD, an associate clinical professor of Surgery at The Ohio State University College of Medicine, had performed an open-heart surgery to repair an aneurysm above the base of the heart.

The procedure, called a valve-sparing aortic root replacement, was meant to help Jared survive a dissection should it ever happen.

Still, when Jared heard, “You’re having a dissection,” he was terrified he wasn’t going to make it.

A massive surgical team

As he went under for the August 2024 surgery, the massive team in the operating room included vascular surgeons who would concentrate on the aorta and other blood vessels and heart surgeons who would ensure blood flow continued from the heart to the lower body.

They were joined by anesthesiologists, nurses, perfusionists who help support the heart and lungs during surgery and others.

As the aorta was replaced with a fabric tube, care had to be taken to hand sew each smaller blood vessel branching from the large artery, leading to the spine, an organ or leg.

Marfan syndrome meant traditional stitching would likely tear through the vessels. Dr. Tillman worked from early morning into the evening, using special reinforcements while attaching about seven vessels one by one.

“We worked so closely as a team. I really feel that is critical for complex cases like these, where we really need a team approach to be able to solve big problems,” Dr. Tillman says.

“Two heads are better than one. Twelve heads are even better than that.”

Back on his feet

Jared’s recovery wasn’t easy. He lost use of one kidney and dropped about 40 pounds.

There have been countless hours of cardiac rehab and physical and occupational therapy. And there have been moments when he wanted to quit.

“The nurses helped make it a little bit easier,” Jared says. “They helped motivate me, keep me going. I wanted to give up a lot, but the nurses, the therapy teams, they push you.”

Dr. Henn numbers the members of Jared’s care network in the hundreds, including critical care doctors and nurses, radiation technologists and respiratory, physical and occupational therapists.

His family also was with him every step of the way.

“To his credit and to his family’s credit, they took every curveball that was thrown at him and proceeded with optimism,” Dr. Henn says. “Jared is a fighter and just a very special guy.”

After his first hospital stay, Jared was determined to keep a goal to complete the Ohio State 4 Miler, an April run/walk that finishes inside Ohio Stadium on The Ohio State University campus.

It was the first time he’d walked such a distance since his ordeal began, and he feared his body wouldn’t hold up. It took everything he had, but with his wife and the rest of his family by his side, he made it across the 50-yard line finish.

Following his final surgery, he set his sights on the Downtown Columbus Hot Chocolate Run, walking 5 kilometers with his family in November.

“Both of them, the feeling of finishing in Columbus close to where I spent so much time in the hospital, meant a lot,” Jared says.

It also meant a lot to the doctors who led his care team, who value the relationships that allow patients like Jared to recover from otherwise catastrophic injuries.

“I’m just thrilled with how Jared has recovered,” Dr. Henn says. “I’m really proud of the team that we have here, to be able to take an extremely complex situation like this and get him through and back to his life.”