At 1:05 am on the 3rd October 2016, it all suddenly hit me. “Not again”, I thought, as my heart thudded erratically in my chest, “Why me?”, “What are the chances?” – all the clichés ran through my head.
It was 4 days after my electrophysiology study that had determined the palpitations I’d been experiencing (and initially ignoring) for the past 4 years were caused by Sino-Atrial Re-entrant Tachycardia. The consultant had hoped to ablate (a procedure which involves scarring the tissue of the heart to prevent arrhythmias) the problem area, but upon discovering the source of the arrhythmia, they had to stop until they could investigate further, as it is a risky area to ablate and could leave me needing a pacemaker if the Sino-Atrial node (the heart’s natural pacemaker) were to be destroyed. What I found so hard to accept was that, after a couple of childhood surgeries to repair Tetralogy of Fallot and a leaking Tricuspid valve, the run of 10 healthy years of glowing reports from my cardiologists had come to an end. Until this point, my cardiac history was a vague memory and due the skills of my surgeons, a relatively positive one.
I was so assured of my resilience that, when I first started to feel my heart fluttering at random periods throughout the day in my 3rd year of university, I dismissed them as stress. When they failed to stop and actually got worse however, a new attitude set in: denial. Over my 4th year I began finding excuses for each one. It happened on a night out? Oh, this bar is pretty warm and crowded. It happened in a lecture? Well, this is a tricky module. It happened on my 10 minute gentle walk to campus? It must be because I rushed out of my house this morning. As I’m sure many other CHD patients have experienced, I so wanted to be a normal, healthy person I went to extreme lengths to ignore the problem. Eventually however I came to my senses and told the doctor about my symptoms. A hasty 24 hour HR monitor later I had a diagnosis of SVT and reassurance that this problem was not particularly dangerous and very controllable with beta blockers. I wasn’t happy, but I felt I’d got off lightly, all things considered.
But over the years there was a steady decline in my condition and the beta-blockers became less and less effective, leading to the EP study in late September 2016 with intention to ablate that was, as mentioned, not very fruitful. As I read up on the condition and considered that the problem wouldn’t easily be corrected, I felt extremely down, and at times even angry. Since university I’d been building a life that had little room for future heart problems, and I didn’t want to make room for them. My busy, sociable life, with a full time job that I love – would this change? I had always been very fixated on not letting my cardiac history affect my life and I was reluctant to make any compromises.
Signed off work for a week, I cast around for coping methods. I wrote down my feelings, and spoke to close friends and family. The other thing I did was reach out to The Somerville Foundation. I had known about it for years, but when I was first passed the leaflets aged 18, I had (rather arrogantly) decided that it wasn’t relevant to healthy old me and stuffed them away somewhere. Yet over the next few weeks TSF’s Facebook group became a bit of a haven to me. Finally there were people who understood exactly what I was going through, who offered support and friendship. I also learnt that it is common to develop new cardiac problems after a successful childhood repair and subsequent healthy teenage hood. This knowledge helped lessen the anger and frustration bubbling away and slowly, oh so slowly, I started to see this new condition as a challenge.
I became more determined than ever to live a healthy, active life despite my dodgy heartrate and future surgeries. Aided by my family and friends, not to mention my extremely supportive employers, I grew used to the more intense spells of palpitations, learned my new limits and continued to thrive. New responsibilities at work, adventurous holidays and a busy lifestyle are all still possible by being open about my condition with those who need to know. Allowing my heart condition to be a part of my adult life has kept it just that – a part, and not a whole, and that’s the way I plan to keep it.