Waiting for a cure

By BETTY RIDGE Special Writer

TAHLEQUAH — FORT GIBSON — Six years ago, Kenny Boling’s life took an unexpected U-turn.

Boling, 44 at the time, always had worked actively, and just six months earlier, he had started his own business, delivering Mission tortilla chip products to area markets. But suddenly, fate dealt the always vigorous man a severe setback when he discovered he had cardiomyopathy, or congestive heart failure.

He learned that while some treatments or products can alleviate the condition, the only cure is a heart transplant. And to get placed on the list to become a heart transplant recipient, his condition has to worsen significantly.

When Dr. Christiaan Barnard performed the first heart transplant on Dec. 3, 1967, the patient lived only a short time. At first, patient survival was measured in days, mainly because of massive rejection of the new heart by the body.

Today, heart transplants are more successful, giving patients the chance for a longer life. According to the American Heart Association website, 2,163 heart transplants were performed in 2008, and 2,210 in 2007. An estimated 800,000 people have conditions that would require a new heart.

Most patients are male – 72.9 percent – and the transplants are apparently more successful for men. The AHA reported the one-year success rate is 88 percent for males, 77.2 percent for females; at three years, it’s 78.3 percent for males, 77.2 percent for females; and at five years, it’s 73.1 percent for males, 67.4 percent for females.

Heart transplant recipients survive an average of 15 years, while one man lived for more than 30 years before dying of cancer.

While other men his age might react to a mid-life crisis by buying a sports car or getting divorced and running around with younger women, Boling’s unwelcome mid-life change has brought him closer to his family, and made him realize what things in life are truly important.

Kenny, a lifelong resident of this area, graduated from Muskogee High School in 1978. His father, Utah Boling, taught Oklahoma history and geography at Alice Robertson Junior High, while his mother, Betty, taught English at Bacone College. His father, 74, also suffers from congestive heart failure, a condition that has improved over the years for him.

Kenny and his wife, Suzy, have been married 17 years, and have two children: Carly, 15, and Cassidy, 10. They live next door to the home where Suzy grew up, in her grandmother’s old house in Fort Gibson. Her parents live about a mile away.

Things were going well for the Bolings at the time Kenny discovered his illness. He was living the American dream, owning his own home and working for himself.

“We were six months into running our own business, as an independent distributor for Mission Foods,” he said. “I left a great job at Cain’s Coffee to try it out.”

During the last few months with Cain’s, Kenny had noticed it was becoming increasingly difficult to lift the cases of coffee, syrup and other heavy items.

“Looking back, I think I was starting to lose some strength back then,” he said.

He had some difficulty sleeping at night, which was compounded when he began his own franchise.

The new enterprise required him to get up about 2 a.m. so he could get to Tulsa to pick up the products between 3 and 3:30 a.m. Then, he went from store to store all day, making deliveries. Some stores required him to be there at a certain time, so he had a tight schedule to maintain.

“I would try to get home to pick up the kids at school,” he said.

He was usually able to enjoy dinner with the family.

“In the evening, I would have to go back to some of the stores and check, make sure everything looked good,” he said.

Family members joined in making sure the demanding endeavor was successful.

“He had us trained to check things when we went into stores,” Suzy said.

The feeling of weakness continued, but not enough to bother him – at first.

“I would be pulling a cart up an incline at the back of a store and be out of breath, have to stop, bend over, take a couple of breaths,” he said.

Singing in the church choir, and the breathing effort it took, became more difficult.

“I couldn’t sing. I was so weak I almost fainted and fell over, but nobody ever noticed,” he said.

One day, he felt tired and lay down to take a nap. He lost his breath and couldn’t breathe. That’s when he became scared. He called Suzy.

“I worked at a doctor’s office, so it was really convenient,” she said. “I thought he was going to come in and they’d say he had pneumonia. But they took an X-ray, and his heart almost filled up his chest.”

Kenny’s heart, which should be about the size of a man’s fist, was three times its normal size.

“After they looked at that, they got him in to see a cardiologist the next day,” Suzy said.

The cardiologist confirmed the problem.

“He said, ‘You’ve got something called cardiomyopathy. We need to get you into the hospital as soon as possible,’” Kenny recalled.

The doctor told him he had a choice: to check into the hospital and see if intravenous medication would alleviate his condition, or go home, take pills, and see if that would help. The latter would take longer, so Kenny opted to check into the hospital, where he stayed two days.

“I was so tired, I didn’t want to take the pills,” he said.

“In the hospital, he lost about 18 pounds of fluid in two days,” Suzy added.

More testing was needed to determine where to take his treatment from there.

“At that time, they couldn’t really say for sure, until they did the dye test [angiogram],” he said.

It checked the ejection fraction, or how efficiently his heart was beating. It was only functioning at 15 percent of what it should be – a very bad number.

“One of the doctors explained to me, ‘Here’s how your heart and my heart beats,’” Suzy demonstrated, curling her fingers to make a tight fist, then extending her fingers.

“And this is how Kenny’s heart beats.”

To demonstrate how weakly his heart was beating, she closed her fingers only slightly, far from making the fist.

He saw Dr. Douglas Ensley of St. Francis Hospital in Tulsa to establish medication and get stabilized. He was told there was no cure for his condition except a heart transplant.

And therein lies the paradox. Kenny was nowhere near qualifying to be placed on the recipient list for a possible transplant. He would have to become a lot weaker first.

“He said the ones who can’t shave themselves or take care of themselves are the ones who get transplants,” Kenny said.

“He said you could live for 15 years with this,” Suzy said.

Most of the time, patients with similar conditions begin to go downhill within three years, Kenny said.

So he went home, to see how he would fare.

For a couple of months, he tried to continue working. A cousin came to town to help with the business. Kenny supervised him, visiting with store managers on the routes, while the cousin performed the physical labor. But it soon became obvious he wasn’t up to continuing the task of making a new business successful. He put it up for sale, and feels fortunate that he soon found a buyer.

Back home, it was time for more waiting.

“The doctor said that in six months, if he hadn’t made the progress he wanted, he would put in a defibrillator,” Suzy said.

It took a bit longer. Kenny discovered his condition in July 2004, and the defibrillator – which also functions as a pacemaker – was put in place in May 2005.

“That was one of the risks a congestive heart failure patient has — just a sudden cardiac arrhythmia, death. The defibrillator will restart the heart,” Kenny said.

He was told the arrhythmia could come without warning, and a person could just collapse and die.  

“After he got the defibrillator, there was a major anxiety that it would go off. The doctor said it would bring you to your knees,” Suzy said.

Fortunately, the defibrillator has never had to come into play. Kenny goes in every six months to get the device checked. The battery will last another year, then will have to be surgically replaced. He said he had some limited motion in his shoulder and some pain around the site when the defibrillator was installed.

Kenny smiles when he says his defibrillator model is the same one used by former Vice President Dick Cheney.

That sense of humor, and his strong family support, have helped him survive while he awaits improvement, or the possibility of a heart transplant.

What’s next

A story in Friday’s Press will detail the challenges of living with cardiomyopathy. In Sunday’s Press, a Tahlequah City Hospital heart surgeon will speak about new techniques of treating heart disease.

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