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American Heart Association News
Melanie Wickersheim has no memory of the first time her heart gave her trouble. She was an infant, and her pediatric myocarditis – an inflammation of the muscular walls of the heart – resolved before she was old enough to know anything had ever been wrong.
She spent the first 10 years of her life like any other kid in Los Angeles, believing she was perfectly healthy. Until suddenly, she wasn’t. She couldn’t hold down food. She felt so weak, she could barely walk. “I remember trying to walk across a parking lot. I had to stop at every light pole to take a breath, panting for air,” she said.
Her doctor said she had the flu. But it went on for weeks. “We took her to the emergency room multiple times,” said her mother, Linda Cerniga. “They never found anything wrong.”
Then one day, “I looked at her legs and noticed her feet were swollen, and I knew.” As a nurse, Cerniga recognized swollen feet as one of the hallmark signs of heart failure.
Her daughter was prescribed heart medications. “But she really didn’t improve,” Cerniga said. “It kept getting worse.”
After months in and out of the hospital, Cerniga learned her daughter would need a heart transplant. While they waited for a match, mother and daughter slept in the same bed, Cerniga keeping a hand on her little girl’s heart to be sure it was still beating.
A match came within a week. The transplant went well. As she recovered, Wickersheim celebrated her 11th birthday in the hospital. Soon she was back to having a relatively normal childhood.
“I could breathe again,” she said. “I could walk across the room. My heart wasn’t pounding out of my chest anymore. I was so excited to go back to school and see my friends.”
With the new heart came a new routine involving numerous anti-rejection medications taken throughout the day. It was a small price to pay for all she’d gained. “I wasn’t ready to die at 10. I knew I had my whole life ahead of me. I was so grateful for every day,” she said.
But as she entered her teenage years, Wickersheim became anxious and depressed. She had panic attacks. She sought mental health support and learned to work through them, going on to college and graduate school. She moved to Chicago. She studied abroad in France. She fell in love, got married and moved to San Francisco. She had a child, using a surrogate to protect her heart and her daughter’s health. They named the baby Greta.
“All of these wonderful things happened,” Wickersheim said. “It was remarkable how much I was able to live and how normal I was able to be.”
When Greta was 1 year old, the family took a trip to California wine country. Wickersheim started feeling some mild chest pain and assumed it was another panic attack. But she also had pain in her back. “I thought maybe I slept funny,” she said. “I reported my symptoms to my doctor, but I wasn’t listening to my body. I’m usually great at that, but I wanted to enjoy my vacation.”
Four days later, a cold flash engulfed her body, followed by severe abdominal pain. She was having a heart attack.
Transplanted hearts can develop cardiac allograft vasculopathy – a condition in which the blood vessels leading to the heart narrow and become blocked. It is one of the leading causes of death in transplant recipients, affecting about half of heart recipients within 10 years of transplant. It can lead to heart failure, severe arrhythmias, sudden cardiac death or, as in Wickersheim’s case, a heart attack.
Her health never fully recovered. She tired more easily. Within a year, Wickersheim was having trouble holding down food – just as she had as a 10-year-old. One day she looked at a selfie she had taken at the beach and was shocked at her appearance. “I looked like skin and bones,” she said.
Her doctors told her she’d need another heart, as well as a new kidney. But first she’d have to gain back some weight. At 5-foot-5, she weighed 112 pounds. She needed to be closer to 120. In the meantime, she received an implantable cardioverter defibrillator, or ICD, a device that could restore her heart’s normal rhythm should it become abnormal.
Wickersheim was so weak that her mother moved in to help her husband care for her and for Greta, who was 2. She made meals to help her daughter gain weight. But Wickersheim still put her daughter to bed each night.
“I would give her an extra kiss and hold her extra close, because I wasn’t sure if it was going to be the day I got the call for a new heart, or if this was the day my heart would give out,” she said.
Greta could tell something was wrong. She’d ask, “Mommy, when are you going to get better so you can chase me and pick me up?”
It was two months before Wickersheim finally got the call. Her daughter was allowed into her hospital room the night before surgery. “She gave me so many kisses and so many hugs,” she recalled. “It was unprompted. I got so much love from everyone, but especially my daughter.”
Wickersheim received a new heart and a kidney. She’s had no rejection issues for more than a year, reaching an important milestone for transplant recipients. Most acute organ rejections occur within the first 12 months.