James Bailey wrote his story to be included in the myheart booklet which was launched in November, 2013.
I was pumped up for the game. The adrenaline was rushing through my body. I couldn’t wait for kick-off but as soon as the whistle blew, my body reacted in a way it had never done before. My heart beating faster than it should have done, racing so fast I couldn’t count the beats. I had barely stretched my legs and sensed something was wrong. As the game progressed my body seemed to deteriorate. My vision became blurred; I struggled to chase the football down; my heart racing frantically during the second half. I didn’t score; we didn’t win and this incident was put down to a ‘panic attack’. I was lucky this incident didn’t cost me my life.
Two weeks later, the CRY screening team visited my school, QEH in Bristol. Even before the aforementioned incident I had returned my screening appointment form – which was more my parents’ choice than mine, as they wanted me to be tested. I did not expect anything to be wrong. The ECG was quick and simple. In fact too quick for my liking; I would return to learning about Desiderius Erasmus sooner than envisaged. However, my friend was sent back to class whilst I was asked to stay behind. I presumed, naively, there had been an error with the processing of my results and they had to redo it. No problem. Yet I quickly sensed that was not the issue as the doctor sat me down.
I’m not sure how you are meant to take bad news; it is not something you really want much practice in. Yet I don’t think my reaction to “You have Wolff-Parkinson-White syndrome” was the norm – I burst out laughing. Perhaps the combination of shock, irony and total disbelief caused this reaction to what was clearly not a laughing matter. My smile quickly faded as I realised the implications and it was very difficult heading back to class afterwards, seeing everyone who was ‘normal’ whereas I was the one who wasn’t.
Disbelief was followed by not wanting to know. I played football daily; I didn’t want to stop playing sport. I didn’t want to have to change anything. At 17, I was in the middle of my AS-Level year and had enough stress without thinking about heart syndromes. Why couldn’t I just forget I had ever had the ECG? Why couldn’t I just ignore the results? The revelation of the diagnosis was equally as surprising, shocking and scary for my family. As hard as it was for me to deal with it, likewise it was not something that they expected to encounter with me being so fit and active.
The cardiologist at Bristol Royal Infirmary tried explaining Wolff-Parkinson-White syndrome (WPW). I still don’t understand what an ‘atrioventricular reciprocating tachycardia’ is but the original diagnosis was confi rmed and he put me on medication. I had gone from taking the occasional paracetemol to having my own pill box reminding me to take my daily dosage of flecainide acetate, which made me sick. Having to stop the car to vomit en route to school was one of the more glamorous episodes of this period.
I felt in a significantly worse position than before CRY visited my school – taking daily medication which caused nausea and having to stop playing sport. However, I was reassured that the catheter ablation operation promised almost a 100% success rate and under general anaesthetic I would be oblivious to what was going on. Surgery coincided with work experience week, so whilst my friends were visiting hospitals to learn the tricks of the trade, I was visiting as a patient.
I remember receiving the bad news that not only had the operation been unsuccessful but there was no alternative. The surgeon had tried for 7 hours. It appeared I would have to live with WPW for life. This was without a doubt my lowest point; to say I was distraught was an understatement. I reverted to wanting to forget about it and the next day attended my school’s Sports Day despite being in tremendous pain, just to erase the problem from my mind.
As my stomach struggled with the flecainide acetate my surgeon gave me the news that he was keen to try a new approach – but I was wary. I couldn’t deal with another operation failing, plus this time I would be having a local anaesthetic.
I was stunned when the surgeon advised me I could listen to music on my iPod throughout the procedure and decided only the “Rocky” soundtrack would do. So as I lay on the operating bed ready to have heart surgery, I had the iconic “Gonna Fly Now” echoing in my ears and this time the surgery was successful! Returning home in a little pain later that day, I addressed my A-Level studies soon after.
Eight months after my diagnosis, the ordeal was over. That was it, I was ‘cured’. Having thought I would only have a coaching role in the coming football season, I returned to playing. Though I may not have won the Golden Boot, nor been able to go on tour to Holland, I knew I would be fi t for the following season and able to play to my heart’s content (that’s the one and only pun, I promise). After months of medication, two operations and much stress, the fact that everything was back to normal seemed more than strange. I had left hospital and the problem had just vanished. The slight scar from the operation had all but faded too, as if it had never happened.
It took time to stop worrying whenever my heart rate rose, even slightly. As a precaution I attended another CRY screening incognito – disguising my face from the one pictured in the CRY magazine, in case they recognised me! Fortunately, my heart really was fine and continues to be to this day. Since my experience with CRY, I have been staggered to read the multitude of cases reported in the press about young people who were less lucky than me. As I flick through the CRY magazines it is incredibly upsetting to see the vast majority of stories in memoriam. It is now that I see how fortunate I really was. There were times when I wished CRY had never visited my school, I had never signed up for the screening and I had never found out. However, without CRY, the reality is that I could well have been one of those sad stories; and through my experience my friends have also become more aware of cardiac problems.
When Alison started CRY in 1995, she faced opposition from consultants who told her she should not be starting a screening programme, as young people could never cope with a diagnosis. Realistically, receiving a diagnosis is hard, young or old. Learning you have a medical problem is always unwelcome news, yet without a diagnosis you cannot resolve the underlying cause. Those consultants with the negative view would be more credible if the diagnosis was for an incurable, untreatable illness. However, cardiac conditions that affect fit and healthy young people are treatable once diagnosed. Yes, I found the news hard to take and things did not go smoothly, but then life so rarely seems to. I haven’t sugar-coated my experience. It certainly wasn’t an easy time and there were both mental and physical obstacles to clear along the way.
Ultimately, whilst being diagnosed may cause changes to your life, it potentially saves your life. This is why I will always be thankful to CRY and continue to support their work. Although WPW is not thought to be genetic, both my sister and my mum were subsequently screened by CRY. CRY now returns annually to my former school.
Should any pupil find themselves diagnosed, I hope they too will realise they are in fact one of the lucky ones who found out before it was too late.