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Music of the Heart

Heart patient John Findlay with his sons.

July 23, 2018

Heart transplant team at The University of Kansas Health System gives local musician a new beat.

Playing the bagpipes with the Kansas City St. Andrew Pipes & Drums was a dream come true for John Findlay. His Scottish roots filled him with passion for this unique instrument. So, when a cardiologist told John he needed to stop playing, he realized just how serious his heart condition had become.

Heart history

Findlay, 45, was first diagnosed with hypertrophic cardiomyopathy (HCM) during his college days at the University of Wisconsin. HCM is a genetic disease that makes it difficult for the heart muscle to pump blood to the rest of the body. For Findlay, it also resulted in abnormal heart rhythms. He did all right for several years, but in 2011, his health began to decline. That's when he made an appointment at The University of Kansas Health System.

"I couldn't climb the 15 stairs to our home's second floor without stopping twice to catch my breath," Findlay says. "I couldn't play with my sons. And the bagpipes were sending my heart into arrhythmia."

Cardiologists determined Findlay was experiencing advanced heart failure. They first treated him with medications, then recommended minimally invasive ablation procedures to stabilize his heart rhythms. The therapies were successful and kept Findlay healthy for a few years, but his heart continued to decline.

Sicker than he realized

Despite shortness of breath, fatigue and fluid in his chest, Findlay continued to work as a civil engineer for the city of Liberty, Missouri. His wife, Michelle, says he was in denial about how sick he was.

"John had a very stubborn form of heart disease with both a weakness and a stiffness of his heart," says his cardiologist. "He was experiencing atrial fibrillation and atrial flutter. An abnormal heart rhythm can be benign or it can be a sign of how sick the heart is. Not only was John's heart sick, his kidneys were starting to fail."

Some patients with Findlay's condition benefit from a left ventricular assist device (LVAD). An LVAD is surgically implanted below the heart to keep blood pumping. It can be a long-term solution or a temporary measure for those seeking a heart transplant. Unfortunately, Findlay's heart was shaped in a way that did not make him a good candidate for an LVAD.

Happy smiling couple.

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Heart transplant offers hope

The University of Kansas Health System offers the full spectrum of care for patients with advanced heart failure, including medicine, surgery, cardiac assist devices and heart transplant.

"Heart transplant is not the right treatment for everyone," the cardiologist says. "It's a complex procedure and expensive. But when it happens for the right person, like John, it's magical."

In October 2016, Findlay's name was added to the organ transplant waiting list. On the same day, he checked into the cardiac intensive care unit (CICU) at The University of Kansas Health System. There, physicians and nurses worked around the clock to keep Findlay's failing heart and kidneys stable while he waited for a new heart.

Findlay kept himself busy in the CICU with social media posts and music. Family, friends, coworkers and college buddies came to visit. John entertained his guests and the nurses with a small, battery-operated practice bagpipe that allowed him to play his favorite songs without blowing.

On Dec. 26, 2016, a heart became available. It was Michelle's birthday, or as she says, her "happiest birthday ever." Findlay had waited 73 days in the CICU. He shrugged it off. "That's pretty short in the grand scheme of things," he says. "The wait times are much longer in other parts of the country."

A cardiothoracic surgeon performed Findlay's transplant surgery. It went smoothly with no evidence of rejection or unexpected complications.

I feel fortunate to live in the Kansas City area. The doctors at The University of Kansas Health System are absolutely brilliant, the staff is great and the facilities are fantastic. – John Findlay

Heart transplant patient

Getting his wind back

Patient John Findlay

Since the transplant, Findlay has experienced a dramatic improvement in his quality of life.

"I'm back at work. Climbing stairs. Playing with my kids. Coaching baseball. And practicing the bagpipe. I consider myself very blessed," he says.

Findlay credits his wife for being his "rock" throughout the process. Of course, there's another family Findlay thinks about every day: his donor's. Findlay has thanked them through an anonymous letter and hopes to meet them someday.

"I feel fortunate to live in the Kansas City area. The doctors at The University of Kansas Health System are absolutely brilliant, the staff is great and the facilities are fantastic," he says.

Luck of the Irish

Now that Findlay has made it through his heart transplant and a full year of recovery, he has just one more goal to achieve. With a little more practice, he hopes to join the Kansas City St. Andrew Pipes & Drums in the 2018 St. Patrick's Day Parade. Watch for him on March 17 – he'll be the one playing with all his heart.

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