First Post - Finding my Voice

• by ed.greenall
• 2022-04-16 20:25:12
• General Posting
• 602 views
• 4 comments

Hi everyone,

My name is Ed, I'm 30 and based in the UK. 

This is my first post so bare with me.

I had a Biotronik Dual Chamber Pacemaker fitted in December 2020 when I was 28. This was due to symptomatic bradycardia and vasovagel syncope with asystole. The latter, I had four episodes within a 30 hour period. Each time my heart stopped for 2 minutes but luckily three of them were in the hospital and I was on a heart monitor so they could see what had happened. I was given CPR for each of those episodes. One of them was at home shortly after waking up with my wife and baby daughter but my heart started again by itself. I managed to take an ECG using my KardiaMobile in the aftermath to show the paramedics when they arrived. My heart rate was irregular so I knew something wasn't right. 

A month previously I'd had two episodes where I was found unconscious at home. Those episodes were also roughly 2 minutes long but I had no other symptoms apart from feeling my heart stop and then collapsing. I was taken to A&E twice within a 6 hour period and discharged with no answers and told I'd just fainted likely due to the bradycardia and low blood pressure. I was made to feel as if I was wasting a bed and that nobody believed me. Even when I was paced, members of staff in other cardiology wards didn't believe I'd been as ill as I was. Luckily my neighbour works in the cardiology ward next to the CCU I was in at our local hospital. Having another voice to help me make people believe me was so reassuring. I felt a lot of frustration and anger when nobody believed me. It cam down to not showing many (if any) other symptoms, especially when I wasn't on a heart monitor in the hospital during an episode. I've learnt asystole doesn't always present symptoms but I'm so blessed to still be here given the out of hospital survival rate for asystole. 

Being in my late 20s at the time and everything happening in a short period, I really struggled with the trauma and still do to this day. I've recently learnt more about what happened to me and I feel lucky to be alive. I only know one other person with a device and they have an ICD, so it's been a lonely journey so far. Most people don't know what to say to me when I tell them what happened or if I'm struggling mentally.

I hope by being here I can be part of the community and heal more than I am doing. 

Ed