Sixty-five day journey gives heart transplant patient a second chance

There was a celebration in the ICU on June 21. Everyone was high-fiving and hugging each other. The news was big — there was a heart for James. And that morning, James Dewees finally left the cardiovascular ICU (CVICU) after 65 days bound for the transplant operating room.

“It was like Christmas. The nurses were so excited and kept telling him, ‘This is it,’ as they prepared to wheel him out,” his wife Bridget said. “He went out of there smiling and waving at everyone. His faith was the strongest I had ever seen it. Everybody was so happy for him.” 

Perhaps no one more than Bridget. It just so happened they would celebrate their 28th wedding anniversary that weekend, and once again, she was confident they would spend their future together.

Doctors discharged James 10 days after the successful surgery. Today, the Dewees family is on a mission to educate the public about heart health and organ donation.

But getting to that point wasn’t easy. Nor was it fast. Spending 65 days in the MUSC Health ICU was a major feat in and of itself, said Thomas Di Salvo, M.D., chief of cardiology. “A lot happens up there, and James just kept his cool. He was the model patient.” 

Not bad for a man who had no time to wrap his mind around the fact that he would not be going home that day in April. James came to MUSC Health for a heart catheterization and doctors said he had to stay — that he needed a heart transplant.

His journey began in 2010 when doctors informed him he was in congestive heart failure — a condition where the heart cannot pump enough blood to meet the body’s needs. Eventually, it can lead to the need for a new heart. James just never thought that would be his reality.

In 2011, he had a near-death experience while singing at a wedding rehearsal. He had just finished his second song at a church in West Ashley, when out like a light he went in front of more than 60 people. 

“My heart started beating really, really fast, and then it just stopped. I had an arrhythmia that led to sudden cardiac death.”

Nurses in the wedding party tried to resuscitate him, as did emergency responders, Bridget said, but to no avail.

“The EMS wanted to pronounce me dead. I wasn’t breathing,” James explained. “They said I had no heartbeat. No pulse. My complexion turned blue. My stomach inflated to the size of a pregnant woman.” 

Finally, in the ER, they were able to revive him. But with the ordeal having lasted a good 40 minutes, doctors shared grim news with Bridget — there was only a 5 percent chance of his coming out of it.

“The doctors prepared me that he could be brain dead. They prepared me for the worst,” Bridget recounted. “But he woke up two days later and asked why he was there and where I was,” she said gleefully.

James came to MUSC Health, and Terry O’Brien, M.D., a cardiologist who specializes in treating heart failure and arrhythmias, followed his care. In early 2017, James’ heart condition worsened. Forty days spent in and out of the hospital that year provided signs his condition was worsening. His ejection fraction — an important measurement used to determine how well a heart is pumping out blood with each beat — hit a low of 16 percent. It was an indication that his heart failure was severe. He also had tremendous fluid buildup. At one MUSC Health appointment, Adrian B. Van Bakel, M.D., Ph.D., immediately admitted him, and James had 30 pounds of fluid removed over a period of six days.

Even though physically James never looked bad, Bridget said, in June 2017, they sent him to the MUSC Health advanced heart failure team.  

That’s when they started talking transplant. In August, they added him to the transplant list. Still, James wasn’t having any of it. Laughing, Bridget recalled the time he asked, “If they call with a heart, how many times can I decline a transplant?”

That casual attitude changed on April 18 when he came in for his visit. He hadn’t felt well for a couple of weeks. James had accompanied Bridget, an assistant vice president for institutional effectiveness at Claflin University, to a professional conference. There, he started throwing up fluid. He was dizzy and weak. It scared her, and she prayed they could make it home.

At that appointment, doctors told him he could not leave that day without a left ventricular assist device (LVAD) or a new heart. Still, he tried to talk them into letting him go home. What he heard was a resounding no.

“The whole team came running into the room in their white coats,” Bridget said. “Dr. Van Bakel told him, ‘You are not leaving here. If you leave here, you might not make it in this shape.’ It was that serious.”

It was going to be a huge transition, but James approached it prayerfully and methodically. He trusted Van Bakel and the team, and he was ready to feel good again. James was on board.

“James took some convincing,” said Van Bakel, medical director of the cardiac transplant program from 1991 to 2017, who has seen his share of resistant patients and those referred too late in their disease to be viable candidates for transplant.

“Once I got on board, I was on board. It took me shifting my mindset and how I thought about the whole process of transplant. My faith was increased, and I started focusing on the goal. I was ready for the journey,” said James.

Van Bakel credited his focus and tenacity. “Once James was convinced of the need for transplant, he put his entire being toward that one goal. I never saw him waver.”

Room 8 — no negativity zone

Bridget said the MUSC Health doctors, nurses and staff in the CVICU and hospital loved James. He’d won their affection with his kindness and optimism, and they wanted him to succeed. 

“James loved everyone, and they loved him. And we knew God was with us. Right outside of his room — Room 8 — there was a work of art titled the ‘praise house.’ When I saw that, I said, ‘James turned his room into a praise room.’ He would read the Bible and encourage others and always had music playing, making others feel good.”

Even as challenging things happened around him in the ICU — patients passing, family members grieving, machines beeping — he remained positive.

“I wasn’t going to question. I was just going to stay focused on what we needed to do. I didn’t allow anyone to come into my atmosphere negative. I kept my attitude positive. I focused on scriptures, and I kept it in check. I made sure everybody felt good when they came in my atmosphere.” 

James works at Boeing as a “Lean” practitioner, a process improvement expert, but ministry has always been a huge part of his life. “He’s a minister, an on-staff minister,” Bridget said. “He has had a relationship with God since his youth.” 

Every step of the way, through the ups and downs, James clung steadfastly to his faith. “A lot of times when things go well — people are like, ‘Thank you God,’ but when you go through your trials — that’s the real test.”

The 11 weeks from appointment to discharge were in many ways a test for the entire family. They all had to shift their thinking and their schedules.

Day after day, Bridget drove 50 miles to work each way, then helped her 16-year-old son Justin with homework and projects, dealt with family issues and maintained the household. Living in Jedburg and working in Orangeburg added to the strain. She was able to work from the hospital a couple of days each week, and every weekend, she and Justin packed up and stayed downtown to be with James. She wanted things to feel as much like home as possible during his 65-day journey. Her brother created a GoFundMe page, and friends from all over supported them generously.

Organ donation

Almost two months post-transplant, James is doing great — fit, active, elated to be healthy and alive. He and his wife still do not know who James’ heart donor was, but they are eternally grateful to the donor. 

“If it wasn’t for that family,” James said, and paused as he reflected on the donor’s heart now beating in his chest. “What they did was so special. I am told the heart wasn’t the only thing they’d given,” he said. “They saved several lives. We can’t thank them enough.”

This experience changed their minds about organ donation. James said that when he got out of the hospital, one of his main goals was to bring awareness to the importance of people donating their organs. Today, they are ambassadors, talking to friends and people in the community.

On Aug. 10, James and Bridget were Di Salvo’s guests at the MUSC Board of Trustees meeting, where James shared his experience with MUSC’s transplant program.

Before James spoke, Di Salvo apprised the board of the program’s expansion. He detailed efforts the division made over the past two years to rebuild its team, like adding five additional heart failure transplant specialists to the existing three, to provide patients with nationally competitive outcomes after heart transplantation.  

“Our results are slightly better than 90 percent survival after one year,” he said. Since 2017, the program has performed 22 heart transplants, including eight so far in 2018.

He also said that in March, the Centers for Medicare and Medicaid Services recertified the MUSC Health heart transplant program. CMS identified zero deficiencies during its visit, which Di Salvo characterized as a rare event and a testament to the effort and work that went into comprehensively reviewing all aspects of the program.

Di Salvo explained that South Carolina is last in the number of patients per capita who are on the transplant waiting list, due in large part to the fact that patients with advanced heart failure need referrals to centers like MUSC Health early, before the disease progresses too far. That doesn’t happen often enough in South Carolina. 

“I wouldn’t be here today if it wasn’t for this heart transplant,” James told the trustees. “This program is very important. It’s not something to take lightly. It really does work.”

Later, James took a moment to praise the team that gave him his second chance. “I wouldn’t be here without the expertise and care I received from Dr. Van Bakel and the entire AHF team and all the amazing nurses and staff who were there for me and pulling for me.”

He also summed up the importance of timing. “We just want to encourage other people with heart problems to get on it early. It’s all about education, knowledge. That’s what’s going to get people to understand the whole process. I was successful because I got in at the right time. I didn’t allow my kidneys or other organs to start failing. Dr. Van Bakel knew there was a window where you would feel good enough to go through the surgery. Then there’s a window when you’re struggling to get through it. You can’t put it off. We just thank God that we were able to see God’s timing and meet the right doctors at MUSC.”