By AMERICAN HEART ASSOCIATION NEWS

0121-SFTH-Amber Waller_Blog

A few summers ago, Amber Waller Karasawa went into cardiac arrest while playing in a co-ed soccer game. Thinking she was having a seizure, the other players stood back.

But a teammate with military training knew what to do and quickly started CPR. Two other players joined in until an ambulance arrived.

Paramedics shocked Karasawa’s heart three times with an automated external defibrillator, or AED, to get it beating again.

At the hospital, the Los Angeles-based actress, then 36, was initially diagnosed with long QT syndrome, an electrical problem with the heart, and got an implantable cardioverter defibrillator.

Then last May, Karasawa began having dizzy spells and unexplained weight gain. Worried, she went to the hospital, where additional testing revealed she was being treated for the wrong condition.

Karasawa in fact had dilated cardiomyopathy, a form of heart disease that occurs when the heart muscle begins to stretch, causing it to become enlarged and unable to adequately pump blood. Over time, the heart becomes weaker, causing heart failure. Symptoms of heart failure include fluid retention, the cause of Karasawa’s weight gain.

Amber Waller Karasawa with her husband Tim Karasawa.

Amber Waller Karasawa with her husband Tim Karasawa.

Looking back, Karasawa says there were signs dating back to childhood, when she’d complain of her heart feeling strange. Testing at the time, including an echocardiogram, didn’t reveal anything.

“I’ve always been an athlete and am in really great shape, so it seemed like doctors didn’t believe anything could be wrong,” she said.

Karasawa said the experience taught her the importance of advocating for herself.

“Something was wrong and I just knew it,” she said. “Now, I’m finally on the right track and getting stronger.”

Following her correct diagnosis last summer, Karasawa learned her condition may have been inherited. Although the cause of dilated cardiomyopathy is often not known, as many as a third of patients inherit it from a parent.

Karasawa’s mom, Vicki Waller, died from sudden cardiac arrest in the spring of 2013, a few months before Karasawa’s cardiac arrest. Waller, who was 61, was babysitting her granddaughters at the time, and there was no one to perform CPR.

After reviewing her mother’s records, Karasawa now believes both her mother and possibly her great-grandmother, who died from a heart attack at age 71, suffered from the same condition.

Amber Waller Karasawa (far right) in 2011 with, from left, her niece Taylor Kemerling, brother-in-law Matt Kemerling, sister Jamie Waller Kemerling, dad Ed Waller, niece Reese Kemerling, and mom Vicki Waller.

Amber Waller Karasawa (far right) in 2011 with, from left, her niece Taylor Kemerling, brother-in-law Matt Kemerling, sister Jamie Waller Kemerling, dad Ed Waller, niece Reese Kemerling, and mom Vicki Waller.

Now 38, Karasawa is working to strengthen her heart in hopes of one day having children. She underwent cardiac rehabilitation to learn how to improve her heart health and regain her confidence while exercising.

Karasawa now shares her story at American Heart Association events to encourage others to learn CPR and be ready to act. She and her husband underwent CPR training following her cardiac arrest and have encouraged friends and family members to do the same.

“I wouldn’t be here today if it hadn’t been for those three people on the field,” she said.

She’s also trying to change the face of heart disease.

“Before, when I heard the words ‘heart disease,’ I immediately thought unfit and unhealthy,” Karasawa said. “But now I know that heart disease can enter into the lives of the most seemingly healthy people, too. Heart disease comes in all shapes and sizes.”

Do you know a “Stories From the Heart” we should tell? Send an email to stories@heart.org.

Photos courtesy of Amber Waller Karasawa