THE CHALLENGES OF LIVING WITH A BAD HEART

Second in a series: As he hopes for new treatments, a Fort Gibson man learns what’s really important in life.

FORT GIBSON — Kenny Boling wasn’t exactly living life in the fast lane, but he was working hard and supporting his family when he was diagnosed with cardiomyopathy six years ago.

Living with the disease, also known as congestive heart failure, has required shifting his direction, and his priorities. The words “family” and “support” are equally important in his vocabulary now, but it’s a two-way street, with support flowing in both directions.

Doctors have told Kenny, 50, that a heart transplant is the only cure for his condition, but he’s not in bad enough shape to get on the waiting list for a transplant. When – and if – that happens, a transplant is still a major procedure, with all the risk that accompanies it.

Until that time, the Bolings have learned to live with his condition and do what they can as a family. He and his wife, Suzy, have two daughters: Carly, 15, and Cassidy, 10.

Kenny had left a successful career with Cain’s Coffee to begin distributing Mission Foods tortilla products six months earlier. He was able to sell his fledgling business shortly after his diagnosis, after he realized he would be unable to put in the physical effort and time it needed to succeed.

“I really wanted to know for sure what I was capable of,” he said.

A friend who managed a Homeland store allowed him to work part-time there, shelving dairy products.

“I found out after about two hours of being on my feet and lifting, I felt really tired and had to go home and sleep three or four hours,” he said.

“It wasn’t worth it, financially, emotionally and physically,” Suzy added.

The small income didn’t offset the stress, so he decided to file for disability. And, as with so many people who go through that process, his application was rejected — not once, but twice. Only after hiring an attorney was he able to achieve disability status.

His doctor wrote a letter, stating Kenny couldn’t work any more. To support his claim, he had to have an independent doctor’s exam and EKG.

“The mental part had to be considered at the same time,” he said. “I was losing my temper real easily. I could blow up.”

He also was suffering memory loss.

Kenny received his disability in March 2007. With disability came Medicare, another help for the family. Suzy had insurance at her workplace, and it had helped with their medical expenses – a luxury many do not have in these days of mounting numbers of uninsured.

“You have to believe it was all in God’s time,” Suzy said of Kenny’s finally achieving disability.

At one time, she had gone into the office of the doctor for whom she worked, crying and saying, “You’ve got to help him.” Before he obtained disability, she was working a full-time job and two part-time jobs.

They joke that they adjusted to the economic downturn before anyone else had to do so.

“I was so young, they told me they expected my heart to improve and for me to be working,” Kenny said, with a smile. “I love work and I miss it terribly.”

“He went from seeing a lot of people every day to seeing nobody but his family,” Suzy said.

Now Kenny spends much of his time at home. He stays as active as he can, with allowances for his condition.

“We used to walk. I could walk a mile without falling over and dying. We would walk late at night in our neighborhood, come home and go to bed,” he said. “I used to play guitar and piano in some churches. I didn’t realize how much strength it took physically, as well as mentally. It used to seem so natural. There was a time when it just became too much for me to get up and do it on a Sunday morning.”

He also played the trombone and sang, two other talents he had to give up.

He went to a counselor, who told him she thought his brain may have lost some oxygen and changed the way he behaved.

“Suzy had to get to know a new husband, because everything was just different,” he said.

With the summer heat, he doesn’t go out much. When school starts, he’ll get up and take his daughters to school.

“If I’ve had a good night’s sleep, I feel like doing a few things around the house,” he said. “I did learn to cook, and I do some dishes.”

In fact, if he was young, healthy and starting over again, he’d consider attending culinary school because he enjoys cooking so much.

“Usually around lunchtime, I call and see what he’s up to,” said Suzy, who now works for the Department of Veterans Affairs. “I can tell what kind of day he’s having, whether he has to take a nap before picking up the girls.”

“I try to conserve my energy so that when they get home, I can have four or five hours with them,” he said.

He also enjoys gardening when it’s not too hot. He plays the guitar when he can, and practices on his keyboard. He enjoys old movies, reading biographies (especially of old baseball players) and genealogy.

“I find a new hobby every two or three months to keep my mind occupied,” he said. “And one of my hobbies is sitting in a chair, watching her [Suzy] mow the grass.”

“Obviously, I’m the primary breadwinner, which is not a problem. It doesn’t bother me,” Suzy said.

“It doesn’t bother me, either,” Kenny added.

Her dad comes over and helps when something in the house needs to be repaired.

When they plan an activity, they consider how much walking it will take, how much stress it would place on Kenny.

“If we do go on trips, we have to plan for him to go and rest,” she said. “The girls and I will go and shop or have a little outing while he is resting.”

They followed this strategy on a trip to Chicago two years ago, an excursion they enjoyed. It was the first plane trip and taxi ride for their daughters, among other things.

The couple said they want to do as many activities they can as a family while Kenny is able, and to form good memories for their daughters.

“I can’t walk like I could three years ago,” he said. “I can tell that I’m losing some stamina.”

He lives a life of maintenance, of wait-and-see.

“The doctors have always said, ‘Just do what your body will let you do,’” Suzy said.

He takes several medications daily. One makes his heart beat harder and “one makes my mind stop working, pretty much,” he said.

“Hopefully we’ve got a good mix of medications right now,” Suzy said.

A heart transplant is possible, but only if Kenny becomes much weaker.

“There’s something life-changing when you almost die,” he said. “Just things like spending time with my kids, taking an interest in what they’re doing.”

Suzy describes her husband as a  “big picture kind of guy.”

“He keeps focused on the big picture and what is important, and most of the time, it’s in these four walls,” she said. “You can really see the sparkle come back into his eyes, when he’s with a small group of his friends and they get together. It used to be when we were walking at night, that was a special time together. Now that the children are older, we can leave, go for a date, go for a drive.”

One thing that really picked him up was his 30-year Muskogee High School reunion. He expended so much energy, he went home and slept two days, maybe even three.

If there’s a positive aspect about Kenny’s illness, it’s that they’re closer now than they would have been otherwise.

“I’m happier than I’ve ever been. People find it hard to believe, but it’s true,” Suzy said. “We just learned that about each other. Your vows really mean something in a situation like this.”

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