Rob Jackson

Living with arrhythmogenic right ventricular cardiomyopathy (ARVC)

I am a 31 year old Sergeant in the Army Air Corps and until recently was a Lynx Helicopter pilot and aircraft commander operating in Northern Ireland. I joined the Army at 18 and have spent the past 12 years living an active, healthy lifestyle as a soldier.

I passed the Army Pilots Course in 2001 and have enjoyed the challenge of flying the Lynx MK7 and MK9 Helicopter. I have served in Germany, Bosnia, Canada, Poland, Cyprus and Northern Ireland.

I am a keen sportsman and have represented my Corps at rugby and windsurfing. I cycled approx 10 miles a day to and from work and considered myself as one of the fittest amongst my work colleagues.

It was Saturday 26th September 2006. I’d been out for a run with my dog Amber in the morning and was heading out for a few beers with the boys that evening. On our return from the club in the car, I found myself sweating and out of breath, it was about 2am. I got home and remember my partner giving me grief for the state I was in. I could feel my heart racing and decided to call an ambulance as I was struggling to remain conscious.

The paramedics arrived in what seemed like minutes and diagnosed me as being in VT (ventricular tachycardia), with a sustained heart rate of 240 bpm. I was rushed to Antrim hospital and was defibrillated back into normal sinus rhythm.

I spent a week in hospital connected to an ECG and showed no further symptoms. I then had an ECHO scan on my heart and exercise stress test on a tread mill and still showed no symptoms of VT. My consultant, Dr Tom Trouton, discharged me with suspected arrhythmogenic right ventricular cardiomyopathy (ARVC) and I was to return at a later date for an angiogram and EP studies. These were both carried out and I was still un-diagnosed. The next step was for me to have a cardiac MRI scan which I would have to wait for 4 months. Luckily the Army paid for my MRI privately at St Georges, which confirmed that I had ARVC.

I was shocked, I considered myself as a healthy and fit guy, with a promising future as a pilot and until that night in September, I’d had no symptoms at all.

On 19th January 2007 I was admitted to the Royal Victoria hospital in Belfast to have my implantable cardioverter defibrillator (ICD) fitted, which will protect me from abnormally fast heart rhythms. I was discharged the same day and am currently on 2 weeks sick leave to recover.

I am slowly coming to terms with the fact I’ll never fly again, or do all the things I’ve enjoyed as a soldier. I am lucky though, I very nearly didn’t make it. I’ve had a lot of help from my friends and family and the Army have re-employed me as an instructor.

I’m already planning a fund raising sponsored walk for the summer to help support CRY. I think their national screening programme is invaluable as most people with my condition are diagnosed when its too late.

David Hillson

Living with suspected arrhythmogenic right ventricular cardiomyopathy (ARVC)

In February 2008 I was out running with a friend. It was bitterly cold and I had not run over the Christmas period so this run was my attempt to ‘get back into it’!

I had always been fairly healthy, played football all my life (and rugby at University) but at the age of 29 I had kind of fallen out of fitness, so a run once a week was my small way of keeping fit.

Anyway, after 20 minutes of the run I felt dizzy and before I knew it, collapsed. After coming round, within minutes I passed out again, so my friend rang for an ambulance. It arrived within 10 minutes and I felt a little embarrassed by what I felt was a bit of a fuss.

On entering the Ambulance they took an ECG and my heart was beating at around 150bpm. They were a little worried as I had stopped exercising about 15 minutes before. Within minutes I was finding it hard to catch my breath and was rushed to hospital.

What I did not know at the time was that my heart had gone into ventricular tachycardia and was accelerating into a life threatening arrhythmia. On arriving at the hospital I was taken through A&E and ‘shocked’ (defibrillated) whilst still awake, to correct the arrhythmia. My heart had apparently almost reached 300bpm.

After the initial overnight observation and resulting stay in the hospital I was transferred to St Thomas’ Hospital in London for further tests. Its funny to reflect on this time, as the night I collapsed was the night before I was due to have a joint birthday party with a friend – all I was preoccupied about was whether I would be OK to go to that!

After a MRI, EP studies and consultation between the cardiologists they advised I have an implantable cardioverter defibrillator (ICD) fitted as they could not rule out the risk that I could be in for further arrhythmias. The doctors feel that I may have the condition known as ARVC and the ICD would act as the ultimate safety net. On receiving the news I was shattered. Though it had been inferred all week it was to be the most likely outcome, it still shocked me as I felt like my life had been altered forever.

So I had my ICD fitted the day after my 30th birthday. Once over my first few weeks of recuperating life pretty much got back to normal. Bike riding and lots of walking were my attempts back to ‘normal’ life. I have since qualified as a teacher and begun teaching in September 2008.

All seemed well until I received my first ‘shock’ from my internal ‘safety net’! I was playing 5 a side football – so was really pushing my heart to its limits perhaps.

It is odd that I have never had a single heart complaint in my life but suddenly this year it seems there is a real problem. However, it is comforting to find out (from sites like this, or being in hospital itself) that there are others out there who have had similar experiences – and like I try to think when reflecting on this: at least I am alive and typing this!

Julia Hubbard

Living with right ventricular outflow tract ventricular tachycardia (RVOT-VT)

I have represented Great Britain in Bobsleigh since 2006 and In October 2007 I crashed in a race and sustained fractured vertebrae and tore all the ligaments in my thoracic spine. I was out of the sport for the rest of the season while I recovered and had rehab.

In April 2008, a month after returning to training, I began to feel dizzy, faint and breathless while I was training.

My heart would feel like it skipped a beat and then race out of control – over and over again while I trained. I went to the doctor who did a basic ECG and told me it was stress and signed me off work for a couple of weeks.

Initially I was only getting symptoms in the gym and track so I was sure it wasn’t stress. I called my team doctor who immediately called me to the Olympic Medical Institute for an exercise ECG. I met Greg Whyte and some of the CRY team and less than two minutes into the test my symptoms started and the test was suspended and I was rushed straight to hospital for an echocardiogram. A week later I was back in London for more tests and an MRI scan. My ECG and symptoms were consistent with two conditions – arrhythmogenic right ventricular cardiomyopathy (a condition that can cause young sudden cardiac death) and right ventricle outflow tract – and they had diagnosed which I had. I was diagnosed with right ventricular outflow tract ventricular tachycardia (RVOT-VT).

The treatment was a lifetime on beta-blockers, which pretty much ended my chances of continuing with competitive sport! As soon as I took the beta-blockers I felt great – my symptoms stopped and I could start to train. I just managed to retain my place on the GB team for the 08/09 season but over the next few months my fitness just got worse and worse. I ended up as a reserve for the season and every time I tested my power, speed and strength, my scores were declining at an alarming rate. In March 2009, I came off the medication as I was so unhappy with the effect it was having and my symptoms returned even more severe than before. I decided to try and live with it, which turned out to be impossible.

I was exhausted all the time – sleeping 10 or 11 hours a day – and at its worst I couldn’t even walk without feeling faint. I couldn’t complete a full training session and was devastated, I just felt ill all the time. I lost my place on the GB team and with it my health insurance, so CRY stepped in and put me in touch with Dr Sharma [now Professor Sharma] who has been monitoring me ever since.

He has explained the condition and the triggers which are not completely understood, but for me appear to be a combination of adrenaline, exercise and stress. RVOT-VT is caused by an extra natural pacemaker that starts firing as well as the main pacemaker and causes the heart rate to shoot up and all the symptoms I experience.

In December 2009, as mysteriously and suddenly as my symptoms started, they virtually stopped. I have been able to start training fully again. I decided to compete in Figure Competitions (a type of women’s bodybuilding) as I needed a goal to aim for and I have placed second in three competitions this year and qualified for next year’s British Finals.

My goal is to compete internationally in 2011 in Figure Competitions. I have also decided to train for the World Master Athletics Championships in 2011. In November this year I was able to return to international Bobsleigh, competing in a European Cup race and achieving a start placing top 10 in the field, which I was really proud of considering I never thought I’d race for Team GB again!

I know my symptoms can return at any time so I am enjoying feeling well and making the most of being able to train again. I also now have the support of CRY and Professor Sharma, so as soon as the symptoms return to the severity I had before, I will have a radiotherapy ablation to cure the problem.

Although the thought of surgery is a bit scary, just knowing that there is a cure if and when I need it, means I don’t have to worry any more. In the meantime I fully intend to make the most of every opportunity I have!

In February 2010 I competed in the British Masters Indoor Athletics Champs and won Gold in both the 60m and 200m for my age group (W35). Now I’m aiming to compete at the World Masters Athletics Champs in the summer – as long as the condition doesn’t get worse I think I could do well! It’s funny, a year ago I didn’t think any of this could be possible and although I know I could get ill again, I know it can be treated so I’m not worrying about it! Just enjoying life and never taking my health for granted any more – just making the most of every day!

Russell Goodman

Living with an implantable cardioverter defibrillator (ICD) and an undiagnosed condition

A healthy way to start the weekend, get up Saturday morning and go for a run. This was something my fiancée Charlotte and I enjoy regularly, sick this one however was very different.

After being out for just over an hour running the streets of Bath on a very sunny September Saturday, Charlotte and I returned to our flat when I suffered suddenly from a cardiac arrest. My heart rate shot up drastically causing me to pass out and completely lose any sign of a pulse.

My life-saving and truly courageous partner performed CPR on me until the ambulance arrived, whereupon I was shocked several times with the on-board defibrillator by paramedics. If it wasn’t for her immediate actions and quick thinking, followed by the quick ambulance response, things would have been very different for me.

I was immediately sent to the intensive care unit of Royal United Hospital in Bath for 3 days being closely monitored. My body temperature was refrigerated to preserve my brain function. After this I was then transferred to the cardiac ward and had no idea how or why I was there.

My fiancée, her family and my own family experienced such extreme uncertainty particularly in those early days, I really can’t imagine the anxiety, worry and stress that was felt.

I was totally unaware and have no memory of anything until at least a week later in hospital – convincing myself I’d been involved in a car accident and concerned at why my chest ached. I was told what happened to me, but it was still very hard to digest in my mind as I had no memory of anything that happened aside from a few minutes before the end of my run. At the time my short-term memory was very poor as I was unable to remember basic things.

Doctors explained to me their thoughts and offered possible answers on what had happened. Initially it was thought I’d caught a virus and was overly exhausted. After 7 weeks being in hospital, examined and scanned several times, I was told I’d have to have an implantable cardioverter defibrillator (ICD) implanted and take daily beta-blockers. At the time I was an electrician, one of the very few jobs not recommended by cardiologists, forcing me to give up and make a new start in my career.

In 2009 I experienced 2 inappropriate shocks from my defibrillator in February, setting me back physically and mentally. Consequently, I was required to have my ICD lead repositioned involving invasive surgery on my 27th birthday.

Today I am still under doctor’s investigation at the Heart Hospital in London, as I have no firm diagnosis for a cardiac illness. Initially, it was suspected that I had arrhythmogenic right ventricular cardiomyopathy (hospital discharge-diagnosis). However, following ECHOs, ECGs, blood tests and my defibrillator downloads, hypertrophic cardiomyopathy and dilated cardiomyopathy were investigated – but (common-gene) genetic testing has proved cardiomyopathy is not an accurate diagnosis. My immediate family have all been screened and none are showing irregular or concerning signs like me, including my identical twin brother.

In October 2009 I completed the Cardiff Half Marathon, which was a real achievement for me both physically and mentally. Since then I have gone on to complete several 10-mile races and fully intend completing a marathon in the near future. I enjoy keeping fit and will continue to do so, despite my medical history.

Signal averaged ECG

This is an ECG that adds together the electrical readings from at least 250 heartbeats so that any very subtle variations can be seen – for example if the electrical impulses in the heart are being conducted more slowly. It is useful for diagnosing Brugada syndrome, unhealthy progressive cardiac conduction defect (PCCD) or arrhythmogenic right ventricular cardiomyopathy (ARVC).