Emily lost her mum Wendy to cardiomyopathy in 2018. She has shared her experience of losing a loved one with us and how it inspired her to join #TeamCardio, run the London Marathon and raise funds for Cardiomyopathy UK.
Emily's Story
Unfortunately, I lost my mum very suddenly when she was just 57 years old. We knew that she had a leaky valve in her heart but as far as we were aware, it was being managed and she was on medicine to help with the side effects. However, in June of 2018, she passed away suddenly in her sleep, leaving me, my brother, and our extended family completely devastated.
She was one of the fittest people I knew, and I couldn’t get my head around how someone so healthy could be gone, just like that. I was 26 when mum passed and every day, I not only grieve for her, but for what she’s missing out on. Since her passing, I’ve got engaged to my incredible partner, and my brother has also got engaged and had two wonderful little girls who mum would have absolutely adored.
Everyone says it, but my mum really was the best mum in the World. She was my first best friend, the first to praise me, and the first to tell me I was wrong. She was amazing – she loved a holiday, loved a gin, and just loved life. She worked at a local primary school as a Teacher’s Assistant, and a minibus driver, and she loved to help run the Play Scheme during the Summer Holidays. The kids loved her. She’d been retired for a few years and spent her days going to the gym, cycling along the beach, and generally just getting out and about as much as she could!
She was an all-around good egg; she gave blood, she helped her neighbours, and she knitted hats and booties for the local hospital’s premature babies. She was always the first to offer to help in any way she could, even if it put her out. She may have only been five foot four and three quarters, (she’d have killed you if you missed off the three quarters!) but she really was a force to be reckoned with.
Learning about cardiomyopathy
We were aware of my mum’s leaky heart valve, but cardiomyopathy wasn’t a term I’d heard until it came back in her post-mortem. After looking further into it, it was scary to hear how many people it affects and that you can have it at any age.
Since then, I have known of multiple people who have also lost loved ones at a young age due to undiagnosed heart issues – it’s scarily more common than you’d ever first realise. I was initially advised by the coroner to get tested as although we were told it wasn’t genetic, my uncle has previously had heart issues. I initially went to the doctor and explained the situation. I was then referred for an echo but didn’t receive an appointment for months.
Luckily, I was due to have my wisdom teeth out under general anaesthetic, and my surgeon pushed the referral as she wasn’t happy to put me under until the tests had been done. On my arrival to the appointment, I was treated with what felt like a slight hostility. I was made to feel like I was wasting their time when I hadn’t had any symptoms.
Despite this experience, when going to the doctor a few months back for my fit note for the London Marathon, the doctor was very concerned that I hadn’t been sent for full tests and went on to refer me to the inherited cardiac team at St Georges where I underwent an echo, ECG, an exercise test and wore a monitor for 24 hours. It was a much more pleasant experience this time round, and I have been referred to go back for tests every five years. Luckily all the tests have come back clear this time around, and I’m ready and raring to go!
If you are affected by cardiomyopathy, make good use of the info on the Cardiomyopathy UK’s website and their support groups, if I’d been more aware of mum’s issue before she passed, I can imagine they would have been an incredible help.
Running The London Marathon
This year I’ll be taking on the London Marathon in aid of Cardiomyopathy UK. I was due to run in 2020 until it was postponed due to COVID. I did take part in the Virtual Marathon in 2020 where I ran the Marathon distance in my mother-in-law’s back garden (during an amber weather warning no less!). I have run the London Marathon twice previously; I love the challenge and however often I say never again, it still seems to happen! I’m excited to get back out on the roads of London, proudly wearing my Cardiomyopathy top, and hopefully do my mum very proud.
I’ve been following my training plan and have taken it more seriously this year; I think previously I thought I could get through it by going to the gym a few times a week, but now I’m a bit older (although no wiser!), it’s been good to have a proper plan to hold myself accountable. It’s definitely more of a challenge this time round having to train during summer. I like to run over lunchtime usually but with the summer we’ve had this year (not that I’m complaining!) it has made it slightly trickier.
My advice would be to have a proper plan in place, ideally with a coach that can hold you accountable to make sure you’re getting your runs in. Also, don’t beat yourself up if not every run is a great one. I can run 15 miles on a Sunday and by the following Friday, I’m struggling to get through 3!
It is important to prepare yourself for the time it takes to train. I remember being at school and declaring I was going to take a gap year to train for the Marathon – you soon realise this isn’t so feasible, but it really is quite the challenge fitting training around work, your relationship and everyday life. Be prepared to turn down a pint at the pub or a night out because the long run is looming – but it’s definitely very worth it!
I hope that more money can be raised for more research so families don’t have to go through what we have had to; it would be great if there came a time when everyone can get tested as so many people live with undiagnosed heart conditions – even those who are fit and healthy playing sports etc. It’s not fussy with who it chooses to take.
If you would like to follow in Emily’s footsteps and run The TCS London Marathon in 2023 for Cardiomyopathy UK, apply here: