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Going the Distance for a Higher Level of Care

After Willis Hoskins was diagnosed with atrial fibrillation, he traveled 5 ½ hours for treatment in Kansas City at The University of Kansas Health System

Willis Hoskins traveled 5.5 hours for treatment in Kansas City for his atrial fibrillationWhen Willis Hoskins met with Loren Berenbom, MD, at The University of Kansas Health System in Kansas City, it was not his first appointment with a cardiologist. In fact, he had seen several cardiologists to treat his hypertrophic cardiomyopathy – a heart condition that causes the heart muscle to thicken and reduces blood flow to the body.

"When I was first diagnosed in my 20s, I wasn't quite sure how to take it," Hoskins says, now 35. "I still wanted to go on with my normal activities, like hanging out with my friends, having a few drinks and enjoying life. I didn't realize how serious of a condition it was."

Early warning signs

Hoskins first noticed early warning signs of his condition while playing little league baseball when he was 10 years old. But at the time, he didn't know his symptoms signaled an underlying heart problem.

"I was out of breath a lot. We just thought I had asthma or something, we didn't think it was anything more," he says.

As he got older, Hoskins says he noticed things still weren't right. But it wasn't until he felt numbness and tingling in his body while out jogging that he decided to see a cardiologist.

Hoskins was diagnosed with hypertrophic cardiomyopathy, or HCM, in 2005. Doctors noticed heart murmurs during his appointments, a symptom of HCM, and put him on medication – but they never talked to him about his condition or how to treat it.

"The diagnosis didn't really mean anything, because the doctors never really explained it," Hoskins says. Eager for more information, he looked into his family history and discovered his uncle suffered from the same condition. Still, Hoskins felt unsure about what his diagnosis meant for his health or his future.

Nationally recognized quality care

The University of Kansas Health System has been recognized as a preferred Center of Excellence by the Hypertrophic Cardiomyopathy Association. This means that our HCM program has met strict criteria for upholding high standards of care, including the latest technology in HCM prevention, diagnosis, treatment and research. The University of Kansas Health System is the only hospital in the region to earn this distinction.

Escalating symptoms

By the time Hoskins turned 30 and moved to Norman, Oklahoma, his symptoms were considerably worse.

"I would sweat a lot. I was short of breath after doing normal things, like walking across the room," Hoskins says.

In 2014, Hoskins went to the emergency room because his heart was beating rapidly and irregularly, an event triggered by atrial fibrillation – a condition that causes abnormal electrical impulses in the heart. The incident was severe and frightening, and it caused Hoskins to re-evaluate his level of care.

"This was the catalyst to my journey to The University of Kansas Health System," he explains. "I knew I needed a specialist to take care of me. I decided I couldn't keep living like this. I was uncomfortable and tired. I was having memory issues. And my heart was beating inside my body like a bass drum. I needed help."

Hoskins made an appointment at The University of Kansas Health System – 5 ½ hours away from his home in Norman. Because of his previous experiences, which provided him with little information, hope or treatment for his condition, Hoskins was skeptical. But his appointment with Dr. Berenbom was different.

"Dr. Berenbom was on top of it from the very beginning. He and the staff made me feel so comfortable and actually talked to me about my condition, explaining it in ways I'd never heard before. They talked to me about my options. It was exactly what I had hoped to hear."

Surgery offers new hope

Cardiothoracic surgeon Gregory Muehlebach, MD, joined Hoskins' care team and suggested that Hoskins was an excellent candidate for surgery. While the thought of open heart surgery was intimidating, Hoskins decided it was his best option.

"I really wanted to wait a while to have the procedure done," says Hoskins. "But Dr. Muehlebach said if I waited much longer, I might cause further damage to my heart and need a heart transplant. I took his advice."

In January 2016, Hoskins receive a septal myectomy – an open-heart procedure that removes part of the thickened, enlarged septum between the heart's ventricles. The procedure helps restore blood flow and reduces the likelihood of blood leaking backward through the mitral valve.

Hoskins' surgery went smoothly, and he was pleased to find his experience was better than expected. "When I was there, there wasn't a single negative experience," he says. "They were concerned about me in so many ways, not just my health."

A full life

Hoskins still comes to The University of Kansas Health System for follow up care. Since his surgery, he says that his quality of life has improved greatly. He is able to perform normal activities without losing his breath, he even enjoys jogging. "I don't know how to quantify it, but I feel so much better," he says.

Currently, Hoskins is a casino safety coordinator and enjoys spending time with his significant other and their 3 children. "I don't expect a lot from life, but I wanted to be able to enjoy simple, normal events and activities with my family. And, now I can," he says. "I may have a scar as a result, but it's my badge of pride."