Feedback about myheart meetings

Please read what our myheart members have to say about the meetings below:

When I was first told that I needed an ICD implanted I was devastated and didn’t have a clue what to expect from the future. After googling (a lot) I came across CRY and gave them a call. I was signed up for the myheart meeting which was to be a month later. I was very apprehensive about going as I didn’t know anyone or what to expect.
When I arrived I followed the signs and headed for the meeting room. There was already another lady sitting down and a CRY representative welcomed me and run me through what to expect. Straight away I felt more at ease and started to look forward to the rest of the day. There were only 4 of us at this meeting so it was quite quiet but I had time to ask questions and actually found out loads of useful information from others that were in similar situations. Even silly things such as using roller coasters or travel insurance.
It was such a relief knowing that others who are living like me and living completely normal lives. I’m really glad I made myself go. Now we have a messenger group so that if we need each other’s advice it’s there in a flash- Rachael Marchant, 33, Hertfordshire

I attended a myheart meeting for the very first time last year and I was so nervous as I suffer really bad anxiety. My partner wasn’t allowed in with me which made me feel even worse about going but once I was in that room with other people that had gone through the same sort of situation as me we talked and listened to eachother and as the day went on I started to feel more at ease and I am now friends with a few on Facebook and I am in a messenger group where we talk on the odd occasion with problems and just to see how everyone is getting on. I feel so happy that I went and I’m looking forward to the next one- Katie Warrington, 26, Kent

I’ve only been to one meeting, as an emergency service worker I rarely get the time off with shifts. However when I went I made friends who I have kept in contact with via social media. We support each other throughout all aspects of life. I don’t have a severe cardiac condition that requires an ICD or similar but it’s nice to talk to those who understand the anxieties you feel- Hayley May, 28, Surrey

Doing something completely new for the first time is always a bit intimidating, no matter what it is. Going to visit someone’s new flat. Starting a new school or college. Updating to Windows 10 when you know it’s going to ruin your life in a thousand meaningless and completely unnecessary ways, but the laptop has done it anyway.
In our particular cases, I’m talking about going to the first myheart meeting to hear from other people about their very personal experiences, but also to possibly speak up about your own diagnosis, prognosis, and maybe even your very real, but unaccepted fears. Because just like starting a new school, learning to live with a heart disease is scary and intimidating, maybe more so. I went to school in Wimbledon (it was a very passive experience). Yeah, heart disease is far more scary.
When I went to my first meeting I think I had been diagnosed with my condition – Dilated Cardiomyopathy (DCM as all the cool kids call it) – for about 5-6 months. I knew very little about my condition….mainly because I had done absolutely nothing to find out anything, but there is still a fear of the unknown in all of us and I wanted to understand. I was having yet another check up at St George’s, sitting there as another doctor told me lots of fantastically engaging information about heart disease and what mine meant in terms of injection fractions and bpm and I genuinely think I may have fallen asleep with my eyes open. As I left one of the nurses asked me if I’d heard of MyHeart and that actually it might be quite useful and interesting for me. I saw immediately that she knew I had not taken in a single iota of what the doctor had just told me: it must have been the vacant expression. So I thought, why not? I mean, if I genuinely wanted to understand what had happened to me and what it was going to be like moving forward, I needed to take a proactive step and stop moping.
So I found myself walking into a meeting room in a hotel with all those familiar feelings of nervousness, slight anxiety, unresolved anger issues due to the football the day before, and immediately I knew it was going to be alright. Any group of designed to help people with serious heart diseases who are given unlimited access to tea and coffee – that’s my kind of group! I joke, but it’s actually true. As a fully self-aware caffeine addict one of the things I was really dreading was being told “you can’t have this any more, you can’t have that any more.” There’s great solace to be found in a good cup of tea. Or Six.
What was very apparent from the outset was that this is a group of people who appear to know each other very well – everyone talks to each other in that way you know they have done this before. As the only new starter it was a little scary. How do I get into the gang? Do I want to be in the gang? Quickly though, I was made to feel really welcome and was included in all the discussions, all the chat in between. I mean, you have to be a bit forthcoming so that people can actually talk to you (Hint 1: one word answers and crippling shyness make conversation really awkward!), but everyone was so happy to include me into a group that talks about very personal issues. And that is really what it all comes down to: myheart is there to help create a community of people living with heart disease, a group who support each other when times are tough, when some odd new symptom suddenly appears and scares you half to death or when you just want to talk about what you can or can’t do in every day life (Hint 2: don’t drink 6 cups of tea at your fist meeting otherwise everyone thinks you are being incredibly blase about your health).It’s never not going to be little scary going to your first meeting of a group where you don’t know a single person, to talk about health issues, but I’m really glad I did. I’ve learnt a lot. I’ve laughed a lot. Most importantly, I’ve found a group of people who are willing to go out of their way to help each other so that we can all struggle through life together- Paul Cowling, 30, London

I’ve had a heart condition since the age of 3, I first heard about CRY after my cardiac arrest at 16 but didn’t feel the need to get involved at the time, as I was young and stubborn and hated the idea of ‘seeking help’. I’m now 28 and attended my first meeting this year after finding out I needed more treatment, and I wish I had got involved sooner.! The meeting was so uplifting and supportive, it was so humbling to meet so many other young people going through similar things to you, as it’s so easy to feel like you’re the only one! It was a warm, friendly environment that left me feeling positive and inspired. I’m really glad to be part of the myheart community and I can’t wait for the next one.!Hannah Edwards, 28, London

I went along to a myheart group meeting 6 months or so after being diagnosed with Long QT syndrome and having an ICD fitted following a cardiac arrest. I must say I was never planning to join any network as a result of my experience but thought it might be useful to go along once to see what it was like, after all I fitted the criteria and maybe I might be able to take away something useful from it. I was coping OK with my over night change in life circumstances but did have some questions!
It was incredible and so encouraging to sit in a room with other ‘young’ people with similar experiences and chat normally about stuff. The things that other friends would be over dramatic about or cover me in unwanted sympathy. The nitty gritty, the details, the feelings and hope for what might be possible in the future. Until then who else had I been able to speak with who actually understood!
So I have found myself going back, not to every meeting but there are always new people going through similar experience and I can be there to offer the same welcome and ears that I got, and catch up with the friends I have made from the group too!
We all come to the myheart gatherings with different stories, conditions, experiences. What I didn’t appreciate before going along was how beneficial it would be being in a room filled with first hand accounts of a variety of conditions and experiences. This has helped me make better personal decision than I was able to make following a 15 minute conversation with a consultant. Condition or no condition everyone takes an interest in their own well-being, so when something life changing happens its only natural that we become interested and maybe research further. As a result we being experts in our own conditions and by sharing experiences and the advise given to us by consultants it has really helped me living with a heart condition.
If you have been referred to as an “unusual case” by a consultant you are not alone!-Tim Butt, 27, Essex

It was a great opportunity and really glad I came-Ryan, 25, London

I would just like to say a big thank you as I really got a lot from this event, it was so nice to be able to talk to a medical professional who explained things in simple terms that I understood rather than medical terms that I never understand 🤣. It was also nice to be in a setting where it didn’t feel rushed and there was time to ask lots of questions. I really hope to be at the next event!-Melissa, 25, London

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National myheart meeting-16th March,2024

A myheart members’ meeting was held at Friends House, 173-177 Euston Road, London NW1 2BJ, between 2pm-5pm on Saturday 16th March 2024. Please

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