!44: Betrayed by Your Body - Sudden Adult Death Syndrome

!±8± Betrayed by Your Body - Sudden Adult Death Syndrome

The last fifteen years has seen an explosion in arrhythmia related medical conditions. I believe that there are two reasons for this. Firstly, there is the rapid increase in technology which allow us to offer increasingly sophisticated therapies to sufferers of conditions such as Hypertrophic Cardiomyopathy, Long QT Syndrome, Short QT Syndrome, Arrhythmogenic Right Ventricular Cardiomyopathy amongst many others. Secondly, the average individual now suffers significantly more stress than fifteen years ago. If at that time you had mentioned Sudden Adult Death Syndrome (SADS) most people would have laughed, thinking that you were probably joking. Now nearly everyone has heard of sudden cardiac death (even if the term SADS means nothing to them).

Imagine my own surprise when in 1992, having suffered a cardiac arrest, the consultant at St George's Hospital Tooting told me that they did not know what was wrong with me except that I was at risk of Sudden Death. "You suffer", he told me, "from Sudden Adult Death Syndrome". (In fact, a couple of years later I was found to be suffering from Arrhythmogenic Right Ventricular Cardiomyopathy (ARVC)). I had thought that I had suffered a 'simple' heart attack.

This article is not about the medical technology or the expert care now available. Nor is it about the changing world and the whys and wherefores of the increasing stress we all now find ourselves under. Rather, it is a personal account aimed at helping the increasing numbers of people who find themselves (either directly or indirectly) affected by the possibility of sudden death. It is the first of a series of such articles.

I was 32 years of age when I suffered my first cardiac arrest. It came completely out of the blue in so far as I had never experienced any heart trouble until that time.

It happened in Accident & Emergency at East Surrey Hospital but my problems had originated an hour earlier at Sandown park racecourse. I was on my own at the races and just making my way to the car park when my heart suddenly accelerated to 200+ beats per minute (ventricular tachycardia, otherwise referred to as VT). That speed sounds like an exaggeration but it must have been close to that fast as I very nearly passed out. The truth is that I was incredibly lucky. If my heart had quickened any faster it would have gone into ventricular fibrillation (VF) (shaking and quivering resulting in loss of electrical control) and I would have suffered a cardiac arrest there and then. Given my situation (on my own in a strange car park, late winter evening ) I would almost certainly have died.

This article is not about the details of that episode so let us just say that I did manage to get to East Surrey Hospital where I finally suffered a cardiac arrest, (the nurse asked me to lie down on the hospital trolley and I promptly arrested - cue alarm bells and the hoohah of the crash trolley). Rather, the main subject matter is the sense of betrayal that sprang out of this first incident (and subsequent incidents). This may sound odd to those who have not experienced a major failure of the body but I am sure that others who like me have had such an experience will know exactly what I am talking about.

The truth is that the body is an incredibly complex system but most of the time we do not think about it in this way. In fact, we take it for granted. It is a matter of trust. We trust it to do all the basics that it has done day in day out for as many years as we can remember, simply because it has always done so. Then suddenly something fails. In our cases, the heart. Suddenly, we lose faith in our ability to do even the simple things - there were times when I wouldn't go up the stairs to go to the toilet because the slight breathlessness made me feel as if I was about to go into ventricular tachycardia (VT) again. Once your heart has accelerated to 250 beats for no good reason and has followed up with cardiac arrest, you never quite see it in the same way again. For years after my experience I clutched my wrist and counted my heartbeat every time I thought I felt it wobble.

And, in my experience, this is the real price of what I would term cardiac meltdown, this complete loss of trust and sense of betrayal. In many ways, it was worse than the fear (inevitably such loss of faith will result in fear) as it changed my perspective on life completely. Prior to this event, I had lived confident in the knowledge that my body was strong, that it was reliable, that it was durable. Sure it had weaknesses, but these were not serious enough to worry about on a daily basis. 25th November 1991 was a watershed in my life. I went from being a self-confident survivor to being vulnerable, to being a victim. I felt sorry for myself, with knobs on.

There is, however, good news for anyone experiencing this fear and betrayal for the first time, anyone who like me finds themselves at risk of Sudden Death (SADS). My experience has taught me that if we so wish we can turn this adversity to our benefit, and actually improve the quality of our lives (I will talk about this in a later article). Although this sounds somewhat trite (I would have laughed before my first cardiac arrest) the truth is that you don't know what you're made of until you dig deep enough. It is amazing what courage there is in even the weakest among us, (and I would have counted myself as a card-carrying member of the of the weak club). I now have a cardiac defibrillator implanted in my stomach. This has gone off many times (in a later article I will recount the most frightening experience, which resulted in my heart stopping for a good three to four minutes - incidentally the cardiac defibrillator recorded this as a successful therapy).

Every time I write an article such as this, I come to the same conclusion - If I can find a full, satisfying and confident life after cardiac meltdown then so can anyone.