She was at home when she experienced persistent vomiting and diarrhoea which steadily got worse. A couple of days later she started to experience muscle cramps all over her body and numbness in her face. Concerned about her symptoms, she called an ambulance. During the journey to the hospital, the paramedics noted that her heart rate was unusually high. Karen, who was 51 at the time, spent a week in hospital receiving treatment for the salmonella infection, although it took a few weeks before she felt well again.
After her discharge from hospital Karen was referred for further tests for her heart including an echocardiogram, angiogram and a stress test, which she completed in April 2022. The following month results revealed that Karen had cardiomyopathy, which is a medical term used to describe diseases that affect your heart muscle. It can affect the size, shape and thickness of your heart muscle, making it difficult for your heart to pump blood around your body. Over time, this can cause your heart to weaken and can lead to heart failure symptoms.
This diagnosis came as a complete surprise. She had no idea what it meant. Karen was generally healthy, maintained a good diet, and stayed active. She kept an eye on her cholesterol and was aware of a family history of high blood pressure. She herself had experienced high blood pressure after the birth of her last child, and her mother had also dealt with it. Karen began treatment with medication and later underwent a cardiac MRI.
I was in the dark to be honest
Karen had spent a lot of time caring for her parents, bringing them to hospital appointments and ensuring they received the best care. She was well-informed about their conditions but felt she hadn’t taken the time to learn about her own. “I was in the dark to be honest,” she said. Life carried on, and Karen remained busy with her three growing children and aging parents.
In May 2024, she had an appointment with the CRY unit (a charity who provide access to free Clinical Assessment and Management to those who are living with an Inherited Cardiac Condition or have suffered, or are at risk of, a sudden cardiac death) for further genetic tests. She was then referred to her local Heart Efficiency Clinic for a review of her condition and medications were altered.
It was like they were talking about someone else
She found the medical staff excellent and appreciated the advice, though it felt surreal. “It was like they were talking about someone else,” she said. She was surprised when advised to avoid strenuous exercise. Karen walks the mini marathon every year, but her consultant said, “not to do it if she wasn’t feeling well.”
She was also encouraged to wear a medical alert bracelet and inform others about her condition. “Cardiomyopathy means that for me, the blood is not flowing around your heart as well as it should be.” Despite everything, she still “didn’t feel like someone with a chronic illness”.
Before all this, Karen had been very fit, but she started noticing shortness of breath. Activities like spinning classes, which she used to enjoy without issue, became challenging. She had pneumonia in February 2021 and was later diagnosed with asthma. Although she was prescribed inhalers, they didn’t seem to help much.
Karens only symptom was shortness of breath.
Shortness of breath is not always your lungs. Very easily mistaken. Once I started the heart medication the breathlessness went away
She was advised by her cardiologist to buy a home ECG monitor and to weigh herself three times a week to check for fluid retention. Having the machine at home “gives her peace of mind”.
Karen was referred to the Irish Heart Foundation and began speaking with a cardiac nurse on the Nurse Support Line monthly. At that point, she still understood very little about her condition. “The nurse was absolutely amazing. She taught me about the condition that I had, that I knew nothing about.”
Karen found that “doctors and hospitals often assume that you know what they’re talking about, and sometimes it can be hard to get the information you need. I knew everything about my mum and dad and their hospital appointments, and only little bits about my own condition.”
With help from the Nurse Support Line, she now feels that she knows a lot about her condition which is dilated cardiomyopathy. “I’m very grateful that I know I have it and I’m not going to just drop dead. I’m on the medication that’s making the muscle of my heart pump a lot better than it had been.”
She no longer has shortness of breath and no longer needs an inhaler.
I now feel very knowledgeable about my diagnosis. I was nervous about going out for a walk on my own. Was something going to happen to me? Even though I was on the proper medication
The Nurse Support Line helped her understand her condition and “educated” her about “ejection fraction (EF)” which is a measurement of how much blood the left ventricle pumps out with each contraction. Since starting medication, her EF has improved, and she’s feeling much better. “This is my body and my health. I want to know my figures.”
Karen is now a member of the Irish Heart Foundation’s Heart Support Network Facebook group and has used their free peer-to-peer support service, which she found very reassuring. She connected well with another woman she spoke to. “She was absolutely lovely and told me about her whole life and how it changed after her heart attack.”
She also completed the HSE’s six-week ‘Living Well’ programme and highly recommends it. “Brilliant, a really good course.”
Karen doesn’t often talk specifically about heart health with her friends, but general health issues do come up. One practical piece of advice she received from her medical team was to store her medical information on her phone, and she’s encouraged many others to do the same. She’s also told her friends that in her experience, “the important test to get done is an echo cardiogram”.
Karen would encourage others to reach out to experts for advice, ask questions and to learn about their condition.
The support has been amazing, from the hospital to staff in the CRY unit to the Irish Heart Foundation, it has been amazing
2025-06-20
