By AMERICAN HEART ASSOCIATION NEWS
For years, Mother’s Day was a bittersweet holiday for Anne Howell. She was only a teenager when her 41-year-old mother, active and seemingly healthy, suffered sudden cardiac death from what doctors later determined was a heart muscle disease called cardiomyopathy.
“It was a shock to all of us: me, my dad and my three sisters,” she said. “From then on, whenever I’d see the Mother’s Day cards in the card aisle, I’d tell myself, ‘This isn’t for you.’”
It wasn’t until years later when she became a mother to sons Adam and Emory that the holiday again became meaningful.
“Having two boys helped me feel closer to my own mother,” said Howell, who lives in High Point, North Carolina.
By then, however, she also shared something else with her late mom: she too had cardiomyopathy.
“I was 28 and in the best shape of my life,” she recalled. But while running a 10K she started to feel “like my heart was about to fly out of my chest.”
She thought she was only dehydrated, but a visit to a cardiologist dispelled that notion.
“I remember the ultrasound tech muttering, ‘Um, your heart is enlarged.’ All I could say was, ‘That’s because I have so much love to give,’” Howell said with a laugh. “I was so naive.”
Within a few days, she received an implantable cardioverter defibrillator, or ICD, to shock her heart should a life-threatening rhythm ever occur. Only six months earlier, her sister Jane Herndon had been diagnosed with cardiomyopathy and received her own implanted defibrillator.
“We were learning that cardiomyopathy runs in the family,” Howell said.
Cardiomyopathy is a group of diseases that cause the heart muscle to become enlarged, rigid or thick, making it weaker and unable to pump blood efficiently. In Anne’s case, she had the most common type, called dilated cardiomyopathy, in which the heart muscle stretches, preventing the heart from contracting normally.
Howell’s doctors told her she is likely to have inherited the condition since at least three other family members have or have had the disease.
Over the next 16 years, she received four ICD replacements and was shocked 48 times.
“I counted, because it would take 250 to 750 volts to kick my heart back to its normal sinus rhythm,” she said. “That hurt!”
As her condition grew progressively worse, her heart became weaker.
“Somehow, with two boys and a part-time job, I compensated,” she said. “But lots of nights, all I could do was come home, make dinner and then spend the rest of the evening sacked out on the sofa.”
Eventually, the drugs she was taking lost their effectiveness. She developed congestive heart failure and had several stints in the hospital. In March of 2009 her doctor mentioned the “T” word: transplant.
After several harrowing months on the wait list, she received a new heart that October.
She admits to conflicting emotions. In an article she wrote for a local magazine, she concedes she prayed for a new heart, but that, “I did not pray for someone’s death; I prayed for my life.”
Today she’s again exercising regularly – walking and running – and has completed several mini-triathlons.
Her sister, Jane, received her own heart transplant in 2012 and together they’ve helped encourage Jane’s daughter, Rebecca Herndon, 25, who also has cardiomyopathy and has an ICD.
Howell is going to school to study cardiovascular sonography so that someday she’ll do ultrasound heart scans on people with the same type of heart problems she had.
“I always had an interest in medicine, so it was only natural for me to go this way,” she said.
During student practice recently, she did some ad hoc counseling of a 39-year-old man who needed treatment and a defibrillator for his thickened heart.
“I told him my story and what I would do if I were him because I once was him,” she recalled. “The next day the cardiologist thanked me because the patient had been on the fence but I’d convinced him he needed the procedure.
“That’s why I’m going to school. I want to make a difference.”
Photos courtesy of Anne Howell