Lauren and her sister Rachel were both diagnosed with dilated cardiomyopathy (DCM) in February of 2020. Lauren has shared her journey with us, from her diagnosis to now living with cardiomyopathy.
The diagnosis
In February 2020 I was due to have an operation to have my gallbladder removed. The day before my operation was meant to take place, I received a call from a nurse at the hospital who told me they couldn’t go ahead with the procedure. The anaesthetist had reviewed my ECG (electrocardiogram) and wasn’t happy, they said something was wrong with my heart. I was called in the same week to have an echo (echocardiogram). The following Monday I was seen by the consultant cardiologist and heart failure nurse, who told me I had dilated cardiomyopathy. I was referred to Bart’s Hospital for an MRI to see if I’d had a heart attack. I was 31 years old.
Before my diagnosis, I had no idea I could be suffering from a heart condition, and I had no obvious cardiomyopathy or heart failure symptoms. I felt dizzy sometimes, but I didn’t think it was anything serious.
After being told I had dilated cardiomyopathy, I felt shocked, confused, and angry. I remember going through the MRI scan, crying every time I was asked to breathe and hold my breath, I didn’t understand what was happening to me or why.
Family history
The same day I was having my MRI, my sister Rachel, who was eight and a half months pregnant at the time, was attending the hospital for her routine ultrasound scan and midwife appointment. At this stage Rachel was struggling to breathe, she couldn’t walk far, and she couldn’t lie down. When she asked her GP and midwife what could be wrong with her, they said it was just the baby pushing everything up and it would pass. At the scan, she was asked to lie on her back and once she got up, she started to cough up blood, and she was rushed to the maternity ward.
After being hooked up to several monitors, the hospital made the decision to call the team from Bart’s to come to the Hospital in Romford with the resus machine. Her heart was failing, and she wouldn’t have made the journey from Romford to London as her heart function was at 12%.
Once the team from Bart’s had arrived, it was decided that the baby would be delivered by C-section and Rachel would be put in an induced coma and taken to intensive care at Barts’s. She was in an induced coma for just over 24 hours, not knowing what had happened, or even if she had a girl or a boy. She then spent ten days in the care of the team at Bart’s. After three days she was reunited with her baby girl, Ava and the rest is history. She was diagnosed with peripartum dilated cardiomyopathy and a leaky valve. At her bedside when the doctor asked if she had any family history, I held my hand up and said, ‘Well yes, I have it too, I found out on Monday’. The doctors were shocked that two sisters could be diagnosed with the same condition within 24 hours of each other.
Living with cardiomyopathy
As I was diagnosed just before lockdown, I was locked in the house for the best part of six months. I felt very down, and I still didn’t fully understand what was wrong with me. Before my experience, I always thought heart conditions were something that older people, heavy drinkers and smokers had. I didn’t think someone at the age of 31 could be diagnosed with anything like this. It felt like just when I thought I’d gotten over it, it hit home that I have a life-changing condition.
Since the world has opened up again, I have been testing the waters to see what I can and can’t do, and I have learnt to take every day as it comes. I love going to concerts and seeing live music. My first concert after the lockdown was to see my favourite band McFly and I cried before they even walked on stage (embarrassing my husband)! I have also managed to travel, first to the Maldives for Christmas and then to Canada and America.
My condition has also affected my job. Normally I would be running around getting things done, but I’ve had to learn to take it slow. I can’t stand up on the train and struggle with the stairs at the station so try and use the step-free access as much as I can.
It took them a while to understand what cardiomyopathy is, but my family and friends have been very supportive. My husband has been my shoulder to cry on since my diagnosis, and he has been with me through every stage.
I think I am still coming to terms with having cardiomyopathy, but I have a better understanding of it now. I suffer from breathlessness, occasional heart palpations, swelling in my ankles and dizziness, but thankfully these symptoms are manageable with my medication.
We know that a diagnosis of cardiomyopathy can feel overwhelming and frightening. We often hear from our community that hearing the experiences of others and their families can be a lifeline, helping them to feel reassured, informed and less isolated. If you would like to share your story, click the link below.