Hope and a big heart

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By Carolyn Ten Broeck

Karon Johnson’s smile is the first thing that greets you when he enters a room, and it never leaves his face, even when sharing the adversity that plagues his life.

While he is an imposing figure of a man, his voice is soft much like his demeanor. However, it is that smile that speaks loudly and proudly of who he is. 

Reared in Dunnellon,  Johnson graduated with honors in 1997 and set out to work in his chosen career of juvenile corrections.

“I always felt like I could change things,” he said, “and I’ve always enjoyed working with children.”

Life was good and remained so until he was exposed to chemicals at work.

Over the course of the next few months, Johnson, who had always been healthy and robust, began experiencing feelings that were alien to him.

“I had shortness of breath,” he said. “A lot of fatigue, loss of energy and no appetite.”

When the symptoms became worse, he sought out medical advice and soon learned on June 16, 2009  he had cardiomyopathy–a disease of the heart muscle caused by the inhalation of the chemicals. He was 31 years old.

“You know how your heart is supposed to be the size of a fist?” he asked leaning forward in the chair.

“The doctor said mine was this big and positioned here,” he demonstrated by placing both his huge fists side by side and laying them in the middle of his chest.

“The doctor said I had an enlarged heart. He actually said, ‘You’ve got a big heart,’” Johnson chuckled.

The only resolution was to install a pacemaker and a defibrillator.

The addition of the devices to both shock his heart into beating and then keep the beat regulated brought some health benefits back to him, but in no time, the symptoms were back with a vengeance.

“A pacemaker is supposed to last five to eight years,” he said, “but because my heart is so big, it was working overtime and in 18 months I had to have another one put in.”

This time the feelings of good health did not follow, he said, and his quality of life began diminishing.

“I couldn’t even walk 20 feet,” he said. “I could not walk from my bedroom to my bathroom. I did not have the energy.”

But his doctors didn’t give up on him.

His primary cardiologist, Dr. Paul Urban, and the cardiology team at Shands told Johnson he would be a good candidate for a heart transplant.

The only problem was someone has to die in order for him to live and it could take time–time he did not have.

That’s when Johnson learned he could use a VAD–a ventricular assist device, specifically a left one (LVAD)–that would act as a circulation system in lieu of his diseased heart.

The implant device is powered by a battery that is on the outside of his clothing and a computer to ensure that circulation is at its optimum.

Johnson was a prime candidate for the LVAD and was excited to know this would be his bridge to transplantation.

“And then there was a little insurance problem,” he grinned.

“I needed $5,000 to get it,” Johnson said,  “and wondered how I would get it.”

He didn’t have to wonder long.

With a close-knit family of 10 siblings, it wasn’t long before the community rallied around him and helped raise the money he needed.

“I felt their prayers,” he said, “and I am still grateful. I kept smiling through everything. I don’t know how long I would have made it without my family and friends.”

On July 31, 2012, he had the LVAD implanted and started on another journey of his life. 

He went to physical therapy/rehab where he learned to exercise properly.

“They taught me things we often take for granted,” he said of those early days spent recuperating.

Today, Johnson–though unable to return to work–is living a close-to-normal life.

“Where I?couldn’t walk 200 feet a year ago, today I?can walk 1200 feet,” he beamed.

“I know my limits and I know what I can tolerate when it comes to activity. The thing is just to keep moving,” he said. “But the best thing,” he added, leaning closer, “is I can drive again. A year ago, I couldn’t drive any more.”

There was never a time during the last four years that he was angry or resentful at the hand he was dealt.

“My parents raised us all to work and contribute to society,” he said. “And if you can give someone else strength and encouragement, it will come back to you.”

“I’ve never been resentful,” he said, “or felt sorry for myself. I just believe that this is my purpose–I’m here for a reason.

“I want to keep encouraging others. I want to talk to people and let them know there’s always hope. I sell hope.”

So much in fact that the manufacturers of his LVAD flew him to San Diego, Calif. to speak on the device and how it has given him a new lease on life.

Does he have good days and bad days now?

Johnson smiled broadly and spoke just a little louder than his usual dulcet tone.

“There are great days and there are greater days,” he said, “just because I am alive.”

Two years is the average time someone waits on the transplant list, he said. He’s been on it 14 months.

When he’s not out encouraging others with the message of hope, he enjoys playing piano. 

“Anything I hear, I can play,” he said, “so I play a little of everything.”

More than anything though, he longs to be back on the water.

“I want to go fishing,” he said, “and this thing,” he adds pointing to the device that keeps him alive, “is not waterproof.”

To date someone has lived with an LVAD for more than nine years. The youngest person to receive one, Johnson said was 11 years old, and among the oldest–former Vice President Dick Cheney who had it for 20 months prior to his heart transplant last year.

“I talk to people and tell them this might be an option for them,” Johnson said. “I want them to feel hope.

“If you know what you believe then the whole walk, the whole journey is easier.

“I’m going to enjoy my life.”