CARTERVILLE — It’s obvious after talking to Terry Burns of Marion for just a few minutes that he loves life. Talk to him a little longer and you will learn he has good reason for that love of life.
On April 1, 2010, Burns said his heart “tapped out.” He had heart failure. Heart failure is a term used to describe a heart that cannot keep up with its work load – to pump blood throughout the body.
Burns told his story to more than 50 people at Heart Failure University, a program of the Cardiac Management Center of Prairie Heart Institute, on Friday in Carterville Community Center.
Burns had a defibrillator, which is an internal device that can deliver therapy to keep a heart beating (called pacing) or start a heart that has stopped beating.
“My defibrillator kept pacing me more and more until it was 100%,” Burns said.
Burns was experiencing the symptoms of heart failure, fatigue, shortness of breath and swelling in his legs. He wasn’t getting better, so he sought care from Prairie Heart Institute. He made an appointment with Dr. Cesar Coello and Physician Assistant Agnes Delaney.
Before the appointment date, Burns felt so bad that he went to the emergency room at Memorial Hospital of Carbondale in February 2017. He met Dr. Coello for the first time in the ER.
“I said I’m your new patient, but we haven’t met yet,” Burns said.
Coello told Burns diagnosed Burns with advance heart failure. He was referred to the Dr. Gregory Ewald and Advanced Heart Failure and Heart Transplantation team at Barnes-Jewish Hospital in St. Louis, a partner with Prairie Heart Institute.
“They told me I was either getting a Left Ventricular Assist Device (LVAD) or heart transplant,” Burns said. “My heart pumped, but it didn’t pump hard enough.”
At Barnes-Jewish Hospital, Burns was told he needed an LVAD, which is a mechanical pump used for patients who have reached end stage heart failure. His situation was complicated by a blood clot in the left ventricle of his heart which put him at high risk for a stroke.
Everything the doctors could do to help was complicated and extremely dangerous. They made the decision to remove the clot and implant the LVAD. He went home with the LVAD after 44 days in the hospital in St. Louis.
“I went to the gym. I could do everything I wanted to do,” Burns said.
He was back under the care of Dr. Coello, Delaney and the team at Prairie Heart Institute. The goal was to improve Burn’s health enough for him to be placed on the heart transplant list.
With the LVAD, Burns had to unplug the batteries at night and plug into a power source. He always carried extra batteries and a controller.
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“Believe it or not, it’s not that bad. I was alive. I was happy. I was happy to be alive,” he said.
Six months later, Burns was added to the heart transplant list. He waited 429 days, then received the call – they had a heart for him. He and his girlfriend made the journey to St. Louis, and he was taken to surgery at 5 a.m. May 20, 2018. Sixteen days later, he went home from the hospital.
“It’s wonderful. You cannot believe how good you feel,” Burns said.
Burns believes several things helped him survive and even thrive through his ordeal. Attitude is important, he stays positive.
“My attitude is part of my personality, but I really had to step it up,” Burns said.
You have to have a sense of humor. You must exercise. He works out two or three days a week at Gold’s Gym in Marion.
“Everything can be cured with exercise,” Burns said. “It improves your quality of life.”
Compliance: Do what your doctors say. Know your medications, what they are for and their side effects. Ask questions. Keep your appointments.
You must have a good caregiver. His caregiver is Susie Foster, his girlfriend. He says that Foster is his own personal nurse because that is her occupation.
“God bless the caregivers. You don’t know how much you mean to those of us with CHF and heart failure,” Burns said.
The other thing is faith in God.
“Without that, you don’t have anything,” Burns said.
Each day, around 4,000 people are on the waiting list for a heart, liver, kidney, lung, pancreas or small bowel transplant in Illinois and more than 114,000 in the U.S., according to giftofhope.org. Twenty-two people a day die in the U.S. while waiting for a life-saving transplant. In Illinois, 212 people are waiting for a heart transplant.
What can you do?
Register to be an organ donor and talk to your family about your decision. Illinois is a first-person consent state for organ donation, meaning you can sign up now to donate your organs at the time of your death. Go to lifegoeson.com for more information.