Robin, 63, is thankful to be able to help care for her grandchild, walk her dog, and get active again, thanks to the cardiac specialists at Ascension Saint Thomas Heart's Hypertrophic Cardiomyopathy Clinic in Nashville.
When Robin was in her late forties, she started to experience symptoms of hypertrophic cardiomyopathy, but she didn't know it. Hypertrophic cardiomyopathy is a unique medical condition typically associated with an abnormal thickening of the heart. She lived in Memphis at the time and was being treated for a heart murmur by a local cardiologist. "I can't tell you how often I wore a heart monitor. The doctors here in Memphis were tracking the electrical part of my heart," she said.
At the time, Robin's mother was living with hypertrophic cardiomyopathy, which can be hereditary. Doctors recommend other members of the family get tested. "When mommy got diagnosed, I was tested, my sister Didi was tested and then my daughter Hannah was tested, and all of us were negative," she said. "As they've learned now, you can develop it as you get older."
As Robin continued to have issues with her heart, an MRI showed that she developed hypertrophic cardiomyopathy and was treated with different medications to alleviate her symptoms so her heart would not have to work as hard, but nothing was working. Eating became difficult because she would be breathless as her body tried to digest food. "I would be winded when climbing up the stairs to our bedroom. When I would go on a walk, I would have to walk slower because I would have terrible shortness of breath," she said. "I was not walking the dog anymore. My quality of life totally changed."
Her local cardiologist recommended she visit a Hypertrophic Cardiomyopathy Clinic for a second opinion and treatment options, including a new medicine available for patients with hypertrophic cardiomyopathy. In her search, she discovered that Ascension Saint Thomas West Hospital had the care team she needed, just a three-hour drive from her home.
The Ascension Saint Thomas Hypertrophic Cardiomyopathy Program has been recognized as a Center of Excellence by the Hypertrophic Cardiomyopathy Association. Mark A. Zenker, MD, a cardiologist at Ascension Saint Thomas Heart's Hypertrophic Cardiomyopathy Clinic, and Anna Rodonski, PA-C, were a part of a team of cardiac specialists working to get a new medicine for patients living with this heart disease called CAMZYOS. "The medicine, CAMZYOS, the new drug that came out in 2022, specifically addresses the problem, not just the symptoms," she said. "I've been reading a lot more about it now, and it's changing how they treat this ailment."
Before taking CAMZYOS, Robin was only taking medicine that addressed the symptoms of her heart disease and not the actual disease itself, which thickens the heart walls. She was left with only two options, and that was open heart surgery or trying the new medicine. Although nervous about the potential side effects of taking a new drug, she felt confident in her care team and their years of research and clinical time working on the medicine. "Dr. Zenker put me on that medicine, and within two weeks, I knew that I was getting better. It was incredible," she said.
In the first year of taking medicine, Robin was required to see Dr. Zenker monthly for checkups and an echocardiogram to ensure that the medicine was not damaging her heart. Now, her appointments are only four times a year, and she is feeling better each day.
"It's totally a miracle story, and I just feel so grateful and humbled and so thankful that this drug is there and that this clinic is right in my back door, and I never knew about it," she said.
Schedule an appointment with one of our cardiologists in our hypertrophic cardiomyopathy program by visiting ascension.org/SaintThomasHeart