It was a long and rigorous journey, but Dwayne Burgess recently won back his faith in medicine, in God and in life. And he gives credit to The Nebraska Medical Center for helping him get there.
When Dwayne Burgess moved to Omaha in 2004, he had hit rock bottom. After 10 difficult years of misdiagnoses and bouncing from one doctor and treatment plan to another, his heart was functioning at just 5 percent, a blood clot had formed in his heart, his kidneys were shutting down and his liver had become so inflamed, it was pushing into his stomach.
After several months of treatment at another Omaha hospital, Burgess was told that there was nothing that could be done for him. “My doctor told me I was in severe heart failure and that I had just two to three months to live,” recalls Burgess. “She said there was nothing we could do but watch me die.” But Burgess refused to listen. “I was not going to accept this,” he says.
Heart failure occurs when the heart is unable to pump enough blood through the body to meet the body’s needs. The condition usually develops slowly over many years. As it progresses, fluid builds up in and around the lungs, causing shortness or breath, fatigue, coughing and swollen legs, feet and ankles. Lack of appropriate treatment can result in kidney and liver failure and eventually death.
Burgess’ primary care doctor suggested he pay a visit to the heart failure team at The Nebraska Medical Center as a last option. It was his last and final hope.
When Burgess met with the heart failure team at The Nebraska Medical Center, he was frustrated, skeptical and angry. “They told me they could help me, but they had to put me in the hospital right away,” recalls Burgess. “At the time, I was pretty upset with doctors and didn’t trust them.”
But this time, Burgess was in the right place. The heart failure program at The Nebraska Medical Center is the most comprehensive program in the state and staffs the only United Network for Organ Sharing-(UNOS) certified heart failure and heart transplant physicians in the region. Certification is a notable achievement that recognizes only those who have completed additional training and experience in heart transplantation, organ retrieval and mechanical circulatory support. In addition, the heart failure program is nationally certified by The Joint Commission. Certification is based on an organization’s utilization of best practices, compliance with rigorous nationally-approved standards as well as demonstration of superior outcomes. The Nebraska Medical Center heart failure program cares for thousands of heart failure patients a year, some of whom are the sickest in the area.
The heart failure team convinced Burgess to stay. The rest happened very quickly. Burgess was admitted to the heart failure floor where a team of doctors and nurses were assigned to his case. He was listed for a heart transplant and began 24-hour medications that were pumped into his bloodstream through a port in his chest. He was also given an assortment of other drugs that would help his heart grow stronger so that he would be able to endure a transplant procedure.
In the meantime, Burgess says his pastor and church congregation expressed concerned about whether he was going to make it.
But Burgess never needed a transplant and he certainly didn’t need a funeral. His heart continued to grow stronger and so did Burgess’ resolve. After two weeks in the hospital, he was given the green light to go home where he continued his treatment under the close supervision of his nurse, Margie Chartrand, RN, BSN, heart failure and heart transplant coordinator at The Nebraska Medical Center; home health nurses and his wife, Bridget.
It was a scary time, recalls Burgess and Bridget. There were so many medications to take, IV drugs to administer, dressing changes, strict diet instructions and on and on. But The Nebraska Medical Center team coached them through it. “I’ve never seen anything like it,” says Burgess. “They came to our apartment in advance and made sure everything was in order. They made sure the vents were cleaned, new filters were put in the furnace and a handicapped sign posted outside. A team of six people came to our apartment that first day I came home. When I saw how well we were being taken care of, I felt safe. My hope got stronger. They made me believe in them.”
And that helped Burgess believe in himself.
Burgess remembers the call he received from Chartrand in late 2005, “‘Do you have a hotline to heaven?’ she asked me, ‘because your heart just keeps getting stronger and stronger. We’ve never seen anything like this.’ I said, ‘God is going to make me a miracle to your hospital.’”
And by all counts, that’s exactly what happened.
By the end of the year, Burgess’ heart was functioning at 38 percent. Fifty percent is considered normal ejection fraction, says Ioana Dumitru, MD, transplant cardiologist and medical director of the heart failure and cardiac transplant program at The Nebraska Medical Center. Ejection fraction refers to the percentage of blood that is pumped out of the heart with each squeeze. A normal ejection fraction is 55 to 60 percent. Today Burgess’ heart is functioning at 55 percent. “Dwayne’s case is fairly rare,” says Dr. Dumitru. “He is one of the lucky ones.”
Heart failure is a progressive disease that typically does not get better. Factors such as an infection, heart attack, diabetes or high blood pressure can cause damage to the heart, causing it to become weaker and eventually lead to the development of chronic heart failure. Oftentimes the symptoms are insidious and hard to diagnose, as was the case for Burgess for many years. Symptoms may mimic a cold or abdominal symptoms, bloating, weight gain, fatigue or drop in appetite. Burgess has been diagnosed with non-ischemic dilated cardiomyopathy, meaning he has an enlarged heart that is not caused by a blockage in the arteries. The exact cause of Burgess’ condition is not known.
Patients seen at the heart failure clinic are usually down to their last option. In most cases, the goal is to slow the progression of the disease. In rare cases, such as Burgess’, the heart does get better and the condition is reversed.
The heart failure clinic offers patients advanced therapies that can repair the heart to some degree and/or preserve the function of the heart with the goal of extending their lives for several more years, and for some, a chance for a heart transplant. In addition to drug therapy, the program offers other advanced therapies such as electrophysiology therapy which includes pacemakers, defibrillators and biventricular pacemakers and defibrillators; mechanical circulatory support (mechanical heart pump); high risk surgery options; and heart transplantation. The Nebraska Medical Center is the only heart transplant center in the state, averaging approximately 15 heart transplants a year.
“If your heart recovers, your prognosis returns to near normal life expectancy from a cardiac perspective,” says Dr. Dumitru. “It’s possible Dwayne’s symptoms will return, but there is no evidence of that right now. Mentally, Dwayne is very strong and has an extremely strong faith, and that is what has helped carry him through all of this. He followed all of our directions. He was bound and determined to learn about his disease, to understand it and to beat it.”
“From a cardiac standpoint, Dwayne is doing 100 percent better,” agrees Chartrand. “When I first met him, he could not stand for any length of time. He was extremely short of breath. Now he’s much more active and living a more normal life again. He looks like a man who has a new lease on life.”
Burgess says he is feeling better and has so much more energy. His biggest challenge right now is to get a handle on his diabetes. Burgess says he looks forward to the day that he can work again. Back in the early 1990s, before heart failure turned his life upside down, Burgess owned his own painting and home remodeling business. As his condition progressed, Burgess lost the energy and physical strength to continue doing the demanding physical labor required of his job and had to give up his business.
Today, Burgess stays close to his church and his faith to keep him active. He and Bridget minister to county jail inmates and help counsel troubled youth. Ultimately, he says they would like to start an orphanage in Omaha. “My goal is to help others because I’ve been there,” he says. “I’ve been out of a job, I’ve been homeless and I’ve lived through bad times. I’ve been given another chance and now I want to help others.”
While Bridget is hopeful, she approaches the future with caution. “I still think about how sick he was when he first came here, and it’s hard to believe we’re where we’re at now,” says Bridget. “What keeps me hopeful is his hopefulness. But deep down, I’m still the worrier. I’m the one looking over his shoulder saying, ‘watch what you’re doing.’”
When Burgess looks back at the last 10 years, he is still incredulous. “I owe my life to first God and then this hospital,” says Burgess. “When I came to The Nebraska Medical Center, a team of doctors would come see me every day. They gave me hope and strength to keep fighting.
By the grace of God, I am still here today.”