Living with Hypertrophic Cardiomyopathy
- Bethany Keime, 26, was 17 when she was diagnosed with hypertrophic cardiomyopathy. At the time, she was training to become a professional dancer in high school.
- She then had a defibrillator implanted into her side so she could continue to dance. And to educate others and help people in a similar situation, she’s since created an online community called HeartCharged.
- Hypertrophic cardiomyopathy, or HCM, is a disease where the heart muscle becomes abnormally thickened which can make it more difficult for this organ to pump blood. This, in turn, can lead to various complications and, in a small number of cases, life-threatening abnormal heart rhythms (arrhythmias) or even sudden death.
When Bethany was in high school, everything seemed to be going as planned. She was training to become a professional ballerina, and exciting opportunities were coming her way.
Read MoreHypertrophic cardiomyopathy, or HCM, is a disease where the heart muscle becomes abnormally thickened which can make it more difficult for this organ to pump blood. This, in turn, can lead to various complications and, in a small number of cases, life-threatening abnormal heart rhythms (arrhythmias) or even sudden death.
Bethany traces her diagnosis back to her aunt on her mother’s side. She had reported some symptoms during a regular appointment with her cardiologist and soon found out that they were a result of hypertrophic cardiomyopathy. Realizing that it was a genetic condition, she immediately called Bethany’s mom and suggested Bethany and her siblings (six older brothers and two younger sisters – nine in all!) get checked. Bethany, her mother and her sister all were diagnosed.
Then there were the fainting spells.
“I was randomly just in the shower and I just collapsed, and nobody knew why, nobody could understand why,” she said. “And then six months later, I collapsed again in the bathroom. No warning, no sign.”
Her sister already had a defibrillator a device that sends an electric pulse or shock to the heart to restore a normal heartbeat – implanted and it was credited for saving her life – twice. The doctors told Bethany she too would need a defibrillator because her condition had worsened. Her sister had an AICD implanted. Bethany would have an S-ICD (the type of defibrillator that has a lead that goes around the heart instead of into the heart as with an AICD) in order to allow her to keep dancing.
“I thought, ‘Wow, that’s incredible, my doctors are actually really listening to me, they see that this is my passion, that this is my dream,” she said. “And so to keep dancing, I got the right implanted defibrillator.”
Before Bethany received her life-saving device, she was struggling to accept how the new addition to her body would look. Would people stare? What would people say when they saw the device protruding from her body?
“Being a dancer, you stare at your body eight hours plus a day,” she said. “And so now I was getting this bulging device in my side that was gonna pop out, and I was getting two scars, and I’m gonna be honest, I’m the girl that freaks out over a pimple.
“So this was definitely something that was going to be hard for me.”
But despite her fears, seeing the defibrillator in her body for the first time left her feeling better than she could have ever anticipated.
“After I got my defibrillator implanted, I remember it was four weeks until all the bandages finally came off,” Bethany said. “And I looked at myself… and I see the scar and I see this big bulge out of my side, and I thought to myself, ‘Wow, this is beautiful. I love it.'”
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Today, Bethany, 26, doesn’t dance professionally, but she continues to dance for fun. She’s adjusted to life with HCM, but that doesn’t mean it’s been easy. So, to help others facing a similar struggle, she created HeartCharged an online community dedicated to supporting heart warriors everywhere and preventing sudden cardiac death through education.
“Now I love to talk about my condition and hope more people will embrace it and love it and love their scars,” she said.
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