Joy’s Story

Joy Noble of Youngstown, Ohio, fought for five years to get a diagnosis that would unlock the answers to her mysterious symptoms. For years she had felt fatigued – not tired, but almost listless. She didn’t have enough energy to go to the grocery store. She would vomit after climbing a few flights of stairs.

“I had already been diagnosed with several autoimmune diseases like Crohn’s Disease in the past and was managing them,” Joy said. “I’ll admit, on paper I’m a hot mess.”

Different doctors in her hometown explained the issues were likely related to her autoimmune issues, or COVID, or anxiety, or depression, or menopause.

“I eventually saw several specialists who ruled out my autoimmune diseases as the cause of my current fatigue,” she said.

Time ticked on as Joy continued to teach special education, doing her best, but feeling her worst. She had multiple visits to physicians, specialists and urgent cares with no solution on the horizon.

In late 2023, Joy switched PCPs to someone she felt took her more seriously and wanted to investigate her health problems. This doctor ordered her to wear a cardiac monitor for a month. Results determined she had “multiple events” and needed an echocardiogram.

She received the ECG, but never made it back into the office for the results. On January 30, 2024, she left school and rushed to the hospital for repeated episodes of vomiting and collapsing. At the hospital, she was told the results of her ECG: she had hypertrophic cardiomyopathy (HCM) and was in heart failure. Her doctors transferred her care to University Hospitals Cleveland Medical Center.

HCM is a heart condition in which the heart muscle thickens abnormally, making it harder for it to pump blood. This thickening can obstruct blood flow and lead to various symptoms, including chest pain, shortness of breath, fatigue and palpitations.

“We know that women with HCM have worse survival rates compared to men,” said Dr. Anene Ukaigwe, an interventional cardiologist with University Hospitals Harrington Heart & Vascular Institute who saw Joy when she initially arrived at UH. “They tend to present at a more advanced age, with more symptoms. On average, it takes about five years from the onset of symptoms to receive a correct diagnosis.”

Joy did her research and was very involved in her care and the plan going forward. She noticed and appreciated the team approach at UH, noting all the caregivers who would do rounds in her room – cardiologists, nurses, pharmacists and nutritionists.

“Everything was a team approach, and I was a part of that team. Every ounce of input that I brought to the table was viewed as important. At UH, I wasn’t dismissed,” she said.

She was presented with several options to address her HCM and ultimately chose to undergo a septal myectomy.

“Septal myectomy is a permanent solution in which part of the thickened heart muscle is removed through open heart surgery,” said Dr. Yasir Abu-Omar, Chief of Cardiac Surgery and Russ and Connie Lincoln Chair in Cardiovascular Innovation at UH Harrington Heart & Vascular Institute. “It’s a good option for people who don’t want to take medication for the rest of their lives. Joy’s surgery was a success, and she was discharged from the hospital.”

Like she did with every health challenge through the years, Joy persisted through her surgical recovery. Now, from a cardiac standpoint, she says everything is wonderful. Her HCM symptoms have subsided. But she still thinks about all the years she searched for answers in vain.

“When I came to UH and they were looking through my medical history, they saw that an echocardiogram I had back in 2021 showed initial signs of this disease,” she said. “The most frustrating part about this was that I hadn’t been quiet about it. I was persistent and seeking answers, but I had still been dismissed by my previous doctors.”

“Signs of heart disease, including heart palpitations and fatigue, are often explained away in women as related to anxiety or menopause, even though heart disease is the number one killer of women,” said Dr. Bradley Lander, the cardiologist with UH Harrington Heart & Vascular Institute who manages Joy’s care. “This is an area where the medical field needs to improve to provide better quality care for women.”

HCM is a genetic heart condition, and the signs were there for Joy. Her mother died from a heart attack at 67 years old, and her maternal grandfather died suddenly and mysteriously.

“No one ever asked me about my family heart history, or if they did, they didn’t connect it to anything going on with me,” Joy said.

“Recognizing the signs of heart disease early is important because the earlier we have a diagnosis, the sooner we can begin treatment,” said Dr. Lander. “We can prevent our patients from years of unnecessary suffering.”

Now, in her early fifties, Joy is relieved to have addressed her cardiac issues and feeling better on that front, as she balances her other health challenges. Her children and grandchildren can pursue testing for HCM if they wish. It’s important for Joy to tell her story so other women can be informed and feel empowered to ask about and manage their own heart health.