If you have HCM that makes you breathless, dizzy or suffer chest pain, this may be due to blockage of the flow of blood from the main pumping chamber in the heart due to thickening of the heart muscle. An injection of alcohol into the blood vessel supplying this bit of muscle can help to reduce the obstruction and improve symptoms. This can be done at the time of coronary angiography (see page XX).

Angiography and angioplasty

During coronary angiography the coronary arteries (the arteries that supply blood to the heart muscle) are injected with a dye to reveal any furring or blockages. This can then be treated with a catheter to open up any narrowing by blowing up a balloon at the narrowing (known as angioplasty) and inserting a metal tube (stent) to keep the artery open.

Antiarrhythmic drugs

A group of medicines used to regulate and control the heart’s rhythm. They may be of use in specific situations in people with LQTS (e.g. mexiletine). Ajmaline and flecainide are used in tests used to diagnose Brugada syndrome.

Aorta

The major blood vessel that leaves the left side of the heart. It supplies blood to the body.

Aortic valve

The valve through which blood passes from the heart into the aorta. The aortic valve is composed of three cusps. A bicuspid valve (a valve that has only two cusps or ‘flaps’) fails to open properly due to the absence of the third cusp and can narrow up due to repetitive damage.

Arrhythmia

A disturbance of the heart’s rhythm. A ‘ventricular’ arrhythmia can be life threatening.

Asystole

When the heart’s rhythm stops completely because there is no electrical activity.

Atrial

Of or belonging to the atria.

Atrial fibrillation

An arrhythmia involving the atria (the two upper chambers of the heart).

Atrium

One of the two top chambers of the heart. (The plural of ‘atrium’ is ‘atria’.)

Autopsy

A post-mortem examination of a dead body.

AV block

See ‘heart block’.

Atrioventricular (AV) node

The part of the heart that lies between the top chambers (atria) and bottom chambers (ventricles). It regulates the transmission of electrical impulses from the natural pacemaker in the atrium to the ventricle. It helps to prevent the heart from pumping too fast if the impulses from the atrium become too rapid.

Bradycardia

Slowing of the heart rate.

Cardiac

‘Of the heart’ or ‘belonging to the heart’.

Cardiac arrest

The state of the heart when it is pumping so erratically or ineffectively that there is no significant blood pressure to supply the heart and brain. If the problem is not resolved within two minutes there will be permanent brain damage, and if left untreated the person will quickly die.

Cardiologist

A doctor who specialises in the heart.

Cardiomyopathy

Disease of the heart muscle, which is usually inheritable.

Cardiopulmonary exercise test

An exercise test that monitors the consumption of oxygen, using a set of breathing tubes.

Cervical sympathectomy

A form of surgery that is useful for some people with LQTS. It reduces the amount of adrenaline and its by-products produced and delivered to the heart by certain nerves (the left cervical ganglia). It involves operating on the left neck and removing or blocking these nerves, which are not essential to normal function. The procedure can be relatively short but it does need a general anaesthetic.

Channelopathy

Conditions characterised by defective ion channels in the cells of the heart.

Computed tomography (CT)

An imaging technique where three-dimensional images are produced using a series of two-dimensional X-ray images.

Congenital heart disease

Disease of the heart, present from birth.

Coronary artery disease

Narrowings and blockages of the arteries supplying the heart muscle, due to ‘furring of the arteries’. Also known as ‘arteriosclerosis’.

Coroner

The government-appointed legal person responsible for ensuring that no foul play has occurred when an unexpected death happens.

Defibrillator

A device used if a person has a cardiac arrest. It may be able to return the heart to a normal rhythm by delivering an electrical ‘shock’ through the chest wall.

Delta wave

The ECG feature characteristic of Wolff-Parkinson-White (WPW) syndrome.

DNA

The genetic code from which proteins – ‘the building blocks of life’ – are made. We all receive a copy of half of each of our parents’ DNA when the egg and sperm meet to conceive a new human being.

Ectopic beat

An ‘extra’ beat which occurs when the heart activates prematurely, disrupting its normal rhythm. The heart’s natural pacemaker resumes its normal control after a brief pause. Most of the time the person does not notice these extra beats but, if they do become aware of them, the sensation depends on how close the ectopic beat occurs to the preceding normal beat. If it is close, only the pause might be noticed. If it occurs further away, it might be felt as an extra beat from the heart, making the rhythm feel irregular or erratic.

Electrical cardioversion

A Cardioversion is a procedure that can help your heart rhythm get back to its normal rhythm (called sinus rhythm) if you have persistently abnormal rhythm such as atrial fibrillation or atrial flutter.

Fibrillation

The fast irregular contraction of muscle fibres in the heart

Gene

The segment of DNA responsible for the production of a specific substance such as a protein that in turn forms the basis for the body to exist and function.

Heart attack

When the heart muscle is damaged by an artery becoming blocked and depriving part of the heart of oxygen. This is caused mainly by coronary artery disease. (A heart attack is also called a ‘myocardial infarct’)

Heart block

A failure of the heart’s electrical impulses to conduct properly from the top chambers (atria) to the bottom chambers (ventricles) via the atrioventricular (AV) node. The severity of the condition and its associated risk can vary.

Heart failure

The reduced pumping function and efficiency of the heart muscle resulting in the body not being supported properly by the heart muscle. This can result in breathlessness and oedema.

Implantable cardiac defibrillator (ICD)

Figure 9: ICD (implantable cardiac defibrillator). An ICD is similar to a pacemaker but the lead to the ventricle is larger, to allow it to deliver a larger shock to the heart when necessary.

A metal electronic device similar to a pacemaker (see below). It can regulate the rhythm of the heartbeat, like a pacemaker does. If a dangerous arrhythmia occurs, the ICD can deliver a shock to the heart. Some people have described the shock as feeling like having a ‘kick in the chest’. An ICD is larger than a pacemaker and may have to be positioned under the chest wall muscle at the left shoulder. The procedure usually takes 1½ to 2 hours and may require a general anaesthetic. The ICD clinic checks are needed once every 3 to 6 months. The battery lasts up to 5 years. When a new battery is needed, the box containing it can be replaced easily.

Ion

A chemical substance (such as sodium or potassium) that carries an electrical charge and forms the basis of the movement of electricity through the heart muscle.

Ion channel

The route that ions take in and out of the heart muscle cells to allow movement of electricity.

Magnetic resonance imaging (MRI)

An MRI uses a magnetic field and radio waves to create pictures of tissues, organs and other structures inside the body.

Mitral valve

This is the valve on the left side of the heart, between the atrium and ventricle.

Mitral valve prolapse (MVP)

When the heart is seen on an echocardiogram, the mitral valve can appear ‘floppy’. This is very common, and affects around 1 or 2 in every 100 people. It can become more severe and the valve can become thickened and leaky. Only in rare cases it can be inherited in a family and may be associated with arrhythmia.

Murmur

The sound of the turbulent flow of blood in the heart, sometimes due to leakage through or narrowing of valves. It can be heard through a stethoscope.

Mutation

An abnormality or ‘mis-spelling’ of the DNA code that causes its eventual product (usually a protein) to function abnormally, which in turn is responsible for a disease. A ‘sporadic’ mutation is not inherited from a parent’s DNA but occurs due to damage to the DNA after the egg or sperm that forms a human embryo is made.

Oedema

Swelling of the ankles, legs and even abdomen due to the collection of fluid under the skin in patients with severe cardiomyopathy, particularly DCM. It is caused by increased pressure of blood returning to the heart from the body but not being pumped efficiently by the heart due to heart failure.

Figure 10:Pacemaker. The leads are connected both to the top chamber (atrium) and the bottom (ventricle) chamber.

Pacemaker

A small metal electronic device with internal batteries. It sits under the skin at the left shoulder. It is attached to the top and bottom chambers of the heart by two electrical leads that are inserted via the large veins near the shoulder. These leads both monitor the heart rhythm and allow treatment to be delivered to the heart. Sometimes only one chamber (the ventricle) is connected. A pacemaker can be inserted under local anaesthetic through a small 2-inch cut in the skin. The procedure takes between 45 minutes and 1 hour.

The device is programmed to prevent the heart from slowing down too much by giving tiny imperceptible shocks that activate the heart, independently from the heart’s natural pacemaker. The pacemaker’s battery, the leads and the programming are monitored once every 6 to 12 months in a Pacing clinic, using a special magnet and computer software. The battery lasts 5-10 years. When a new battery is needed, the metal box is replaced – a simple procedure that can be performed through the old scar.

Palpitations

A fast heart beat that may be felt as the heart pounding regularly or irregularly.

Pathologist

A doctor trained to examine the body after death, and samples of its organs, in order to diagnose any abnormalities.

Post-mortem

The examination of a dead body by a pathologist.

Prognosis

A patient’s outlook. In this context it means the likelihood of any life threatening events.

Prolonged repolarisation

When repolarisation is slower than normal, the time taken for it to occur is described as prolonged. This can be represented on the ECG by abnormalities of T waves and an increase in the QT interval.

Pulmonary embolus (PE)

In certain circumstances a large clot can form in the deep veins of the legs – for example after long periods of immobility. The clot can dislodge and travel though the veins to the heart where it can block the arteries supplying the lungs and stop the flow of blood to the body. This can cause a sudden collapse and a rapid death. (Also called ‘thromboembolism’.)

QT interval

An ECG measure of repolarisation from the beginning of the QRS to the end of the T wave.

Radiofrequency (RF) ablation

The use of high frequency radio waves to ‘burn’ away small areas of heart tissue such as the extra or ‘accessory’ pathways seen in Wolff-Parkinson-White syndrome or areas that cause arrhythmia in ARVC.

Repolarisation

The electrical resetting of the heart muscle ready for its next activation. The time taken is measured by the QT interval.

Sinoatrial (SA) node

The sinoatrial node generates the normal or sinus rhythm of the heart. It is impulse generating tissue that acts as a pacemaker. It is located in the right atrium of the heart.

Sudden cardiac death (SCD)

A death is described as sudden when it occurs unexpectedly, spontaneously and/or even dramatically. If the death is due to heart disease it is called sudden cardiac death (SCD). Some will be unwitnessed or occur during sleep, while others occur during or immediately after exercise (exercise-related sudden cardiac death or ERSCD).

Stethoscope

A piece of equipment which a doctor uses to listen to the heart and chest.

Surgical myectomy

This is a treatment for HCM that involves removing small amounts of over developed heart muscle to reduce any blockage in blood flow in the heart.

Syndrome

A collection of medical features of an illness that make it a distinctive condition.

Tachycardia

A rapid heart rate.

Thromboembolism

See ‘pulmonary embolus’ above.

Toxicology

The scientific study of the effects of substances (drugs and chemicals) on the body and mind.

Vasovagal syndrome

A disorder of the nerves supplying the blood vessels and heart that can result in dizzy episodes or blackouts. This is due to sudden drops in blood pressure because of rapid opening up (‘dilatation’) of the arteries with or without sudden slowing of the heart rate. It is usually harmless although blackouts may place the person in dangerous situations. Treatment can involve tablets and/or a pacemaker. It can be diagnosed with a tilt-test or implantable loop recorder (see pages XX).

Ventricles

The two bottom chambers of the heart that pump blood to the body and the lungs.

Ventricular

From, or belonging to, the ventricle.

Ventricular fibrillation

In ventricular fibrillation (VF) the muscle fibres in the ventricles contract completely randomly so the ventricles cannot perform their pumping action.

Alcohol septal ablation

If you have HCM that makes you breathless, dizzy or suffer chest pain, this may be due to blockage of the flow of blood from the main pumping chamber in the heart due to thickening of the heart muscle. An injection of alcohol into the blood vessel supplying this bit of muscle can help to reduce the obstruction and improve symptoms. This can be done at the time of coronary angiography (see page XX).

Angiography and angioplasty

During coronary angiography the coronary arteries (the arteries that supply bloodto the heart muscle) are injected with a dye to reveal any furring or blockages. This can then be treated with a catheter to open up any narrowing by blowing up a balloon at the narrowing (known as angioplasty) and inserting a metal tube (stent) to keep the artery open (see pages XX and XX).

Antiarrhythmic drugs

A group of medicines used to regulate and control the heart’s rhythm.They may be of use in specific situations in people with LQTS (e.g.mexiletine). Ajmaline and flecainide are used in tests used to diagnose Brugadasyndrome.

Aorta

The major blood vessel that leaves the left side of the heart. It suppliesblood to the body.

Aortic valve

The valve through which blood passes from the heart into the aorta. The aortic valve is composed of three cusps. Abicuspid valve (a valve that has only two cusps or ‘flaps’) fails to openproperly due to the absence of the third cusp and can narrow up due torepetitive damage.

Arrhythmia

A disturbance of the heart’s rhythm. A ‘ventricular’ arrhythmia can belife threatening.

Asystole

When the heart’s rhythm stops completely because there is no electricalactivity.

Atrial

Of or belonging to the atria.

Atrial fibrillation

 An arrhythmia involving the atria (the two upper chambers of the heart).

Atrium

One of the two top chambers of the heart. (The plural of ‘atrium’ is‘atria’.)

Autopsy

A post-mortem examination of a dead body.

AV block

See ‘heart block’.

Atrioventricular (AV) node

The part of the heart that lies between the topchambers (atria) and bottom chambers (ventricles). It regulates thetransmission of electrical impulses from the natural pacemaker in the atrium to the ventricle. It helps to prevent the heart from pumping toofast if the impulses from the atrium become too rapid.

Bradycardia

Slowing of the heart rate.

Cardiac

‘Of the heart’ or ‘belonging to the heart’.

Cardiac arrest

The state of the heart when it is pumping so erratically or ineffectively thatthere is no significant blood pressure to supply the heart and brain. If theproblem is not resolved within two minutes there will be permanent braindamage, and if left untreated the person will quickly die.

Cardiologist

A doctor who specialises in the heart.

Cardiomyopathy

Disease of the heart muscle, which is usually inheritable.

Cardiopulmonary exercise test

An exercise test that monitors the consumption of oxygen, using a set ofbreathing tubes.

Cervical sympathectomy

A form of surgery that is useful for some people with LQTS. It reduces theamount of adrenaline and its by-products produced and delivered to theheart by certain nerves (the left cervical ganglia). It involves operating onthe left neck and removing or blocking these nerves, which are notessential to normal function. The procedure can be relatively short but itdoes need a general anaesthetic.

Channelopathy

Conditions characterised by defective ion channels in the cells of the heart.

Computed tomography (CT)

An imaging technique where three-dimensional images are produced using a series of two-dimensional X-ray images.

Congenital heart disease

Disease of the heart, present from birth.

Coronary artery disease

Narrowings and blockages of the arteries supplying the heart muscle, dueto ‘furring of the arteries’. Also known as ‘arteriosclerosis’.

Coroner

The government-appointed legal person responsible for ensuring that nofoul play has occurred when an unexpected death happens.

Defibrillator

A device used if a person has a cardiac arrest. It may be able to return theheart to a normal rhythm by delivering an electrical ‘shock’ through thechest wall.

Delta wave

The ECG feature characteristic of Wolff-Parkinson-White (WPW)syndrome.

DNA

The genetic code from which proteins – ‘the building blocks of life’ – aremade. We all receive a copy of half of each of our parents’ DNA when theegg and sperm meet to conceive a new human being.

Ectopic beat

An ‘extra’ beat which occurs when the heart activates prematurely,disrupting its normal rhythm. The heart’s natural pacemaker resumes itsnormal control after a brief pause. Most of the time the person does notnotice these extra beats but, if they do become aware of them, thesensation depends on how close the ectopic beat occurs to the precedingnormal beat. If it is close, only the pause might be noticed. If it occursfurther away, it might be felt as an extra beat from the heart, making therhythm feel irregular or erratic.

Electrical cardioversion

A Cardioversion is a procedure that can help your heart rhythm get back to its normal rhythm (called sinus rhythm) if you have persistently abnormal rhythm such as atrial fibrillation or atrial flutter.

Fibrillation

The fast irregular contraction of muscle fibres in the heart

Gene

The segment of DNA responsible for the production of a specificsubstance such as a protein that in turn forms the basis for the body toexist and function.

Heart attack

When the heart muscle is damaged by an artery becoming blocked anddepriving part of the heart of oxygen. This is caused mainly by coronaryartery disease. (A heart attack is also called a ‘myocardial infarct’)

Heart block

A failure of the heart’s electrical impulses to conduct properly from thetop chambers (atria) to the bottom chambers (ventricles) via theatrioventricular (AV) node. The severity of the condition and itsassociated risk can vary.

Heart failure

The reduced pumping function and efficiency of the heart muscle resulting in the body not being supported properly by the heart muscle. This can result in breathlessness and oedema.

Implantable cardiac defibrillator (ICD)

A metal electronic device similar to a pacemaker (see below). It can regulatethe rhythm of the heartbeat, like a pacemaker does. If a dangerousarrhythmia occurs, the ICD candeliver a shock to the heart.Some people have described theshock as feeling like having a‘kick in the chest’. An ICD islarger than a pacemaker andmay have to be positioned underthe chest wall muscle at the leftshoulder. The procedure usuallytakes 1½ to 2 hours and mayrequire a general anaesthetic.The ICD clinic checks areneeded once every 3 to 6months. The battery lasts up to 5years. When a new battery isneeded, the box containing it canbe replaced easily.

Ion

A chemical substance (such as sodium or potassium) that carries anelectrical charge and forms the basis of the movement of electricitythrough the heart muscle.

Ion channel

The route that ions take in and out of the heart muscle cells to allowmovement of electricity.

Magnetic resonance imaging (MRI)

An MRI uses a magnetic field and radio waves to create pictures of tissues, organs and other structures inside the body.

Mitral valve

This is the valve on the left side of the heart, between the atrium and ventricle.

Mitral valve prolapse (MVP)

When the heart is seen on an echocardiogram, the mitral valve canappear ‘floppy’. This is very common, and affects around 1 or 2 in every100 people. It can become more severe and the valve can becomethickened and leaky. Only in rare cases it can be inherited in a family andmay be associated with arrhythmia.

Murmur

The sound of the turbulent flow of blood in the heart, sometimes due toleakage through or narrowing of valves. It can be heard through astethoscope.

Mutation

An abnormality or ‘mis-spelling’ of the DNA code that causes its eventualproduct (usually a protein) to function abnormally, which in turn isresponsible for a disease. A ‘sporadic’ mutation is not inherited from aparent’s DNA but occurs due to damage to the DNA after the egg orsperm that forms a human embryo is made.

Oedema

Swelling of the ankles, legs and even abdomen due to the collection of fluid under the skin in patients with severe cardiomyopathy, particularly DCM. It is caused by increased pressure of blood returning to the heart from the body but not being pumped efficiently by the heart due to heart failure.

Pacemaker

A small metal electronic devicewith internal batteries. It sitsunder the skin at the leftshoulder. It is attached to the topand bottom chambers of the heartby two electrical leads that areinserted via the large veins nearthe shoulder. These leads bothmonitor the heart rhythm andallow treatment to be delivered tothe heart. Sometimes only onechamber (the ventricle) isconnected. A pacemaker can beinserted under local anaestheticthrough a small 2-inch cut in theskin. The procedure takesbetween 45 minutes and 1 hour.

The device is programmed to prevent the heart from slowing down toomuch by giving tiny imperceptible shocks that activate the heart, independentlyfrom the heart’s natural pacemaker. The pacemaker’s battery,the leads and the programming are monitored once every 6 to 12months in a Pacing clinic, using a special magnet and computersoftware. The battery lasts 5-10 years. When a new battery is needed,the metal box is replaced – a simple procedure that can be performedthrough the old scar.

Palpitations

A fast heart beat that may be felt as the heart pounding regularly or irregularly.

Pathologist

A doctor trained to examine the body after death, and samples of itsorgans, in order to diagnose any abnormalities.

Post-mortem

The examination of a dead body by a pathologist.

Prognosis

A patient’s outlook. In this context it means the likelihood of any life threateningevents.

Prolonged repolarisation

When repolarisation is slower than normal, the time taken for it to occuris described as prolonged. This can be represented on the ECG byabnormalities of T waves and an increase in the QT interval.

Pulmonary embolus (PE)

In certain circumstances a large clot can form in the deep veins of thelegs – for example after long periods of immobility. The clot can dislodgeand travel though the veins to the heart where it can block the arteriessupplying the lungs and stop the flow of blood to the body. This cancause a sudden collapse and a rapid death. (Also called ‘thromboembolism’.)

QT interval

An ECG measure of repolarisation from the beginning of the QRS to theend of the T wave.

Radiofrequency (RF) ablation

The use of high frequency radio waves to ‘burn’ away small areas ofheart tissue such as the extra or ‘accessory’ pathways seen in Wolff-Parkinson-White syndrome or areas that cause arrhythmia in ARVC.

Repolarisation

The electrical resetting of the heart muscle ready for its next activation.The time taken is measured by the QT interval.

Sinoatrial (SA) node

The sinoatrial node generates the normal or sinus rhythm of the heart. It is impulse generating tissue that acts as a pacemaker. It is located in the right atrium of the heart.

Sudden cardiac death (SCD)

A death is described as sudden when it occurs unexpectedly,spontaneously and/or even dramatically. If the death is due to heartdisease it is called sudden cardiac death (SCD). Some will beunwitnessed or occur during sleep, while others occur during or immediatelyafter exercise (exercise-related sudden cardiac death or ERSCD).

Stethoscope

A piece of equipment which a doctor uses to listen to the heart andchest.

Surgical myectomy

This is a treatment for HCM that involves removing small amounts of over developed heart muscle to reduce any blockage in blood flow in the heart.

Syndrome

A collection of medical features of an illness that make it a distinctivecondition.

Tachycardia

A rapid heart rate.

Thromboembolism

See ‘pulmonary embolus’ above.

Toxicology

The scientific study of the effects of substances (drugs and chemicals)on the body and mind.

Vasovagal syndrome

A disorder of the nerves supplying the blood vessels and heart that canresult in dizzy episodes or blackouts. This is due to sudden drops inblood pressure because of rapid opening up (‘dilatation’) of the arterieswith or without sudden slowing of the heart rate. It is usually harmlessalthough blackouts may place the person in dangerous situations.Treatment can involve tablets and/or a pacemaker. It can be diagnosed with a tilt-test or implantable loop recorder (see pages XX).

Ventricles

The two bottom chambers of the heart that pump blood to the body and the lungs.

Ventricular

From, or belonging to, the ventricle.

Ventricular fibrillation

In ventricular fibrillation (VF) the muscle fibres in the ventricles contract completely randomly so the ventricles cannot perform their pumping action.

Limerick Vikings American Football Team were always going to be a tough team to play and making the 5 hour coach journey to Limerick University was always going to be a disadvantage.

It was the 25th July 2009. I got off the coach after a 6am start and remember saying “I don’t feel good about this”. At the time I put it down to nerves, playing in the semi-final of the Shamrock Bowl.

It was in the 3rd Quarter when I was illegally hit square in the back after the whistle, that I was rendered unconscious. It took the Red Cross 15 minutes to carefully place me on a spinal board and lifted on to the ambulance.

However, on the way over my team mate Matt Craig (ex Paramedic in the States) pointed out that I wasn’t breathing and then discovered I had no pulse. I was dropped immediately and CPR was performed sending emotional shockwaves through both teams.

I came in and out of consciousness and was immediately taken to hospital. I was accompanied by my parents and spent the next six days having a series of tests and scans; trying to get back on my feet and suffering from a series of panic attacks. I was then informed I had SVT (Supraventricular tachycardia).

I wasn’t fazed that I had a health problem; I was, however, affected by the sudden limitations.

Everything initially became a struggle – walking long distances, even staying awake for long periods of time; and I suffered breathlessness and pains in my chest. I had gone from being a regular gym enthusiast, fit and healthy, an international athlete for Northern Ireland and Ireland, University Sports Scholar, first pick wide receiver in American Football for Carrickfergus Knights and had played for Team Ireland; to struggling to run the length of myself. Being both stubborn and determined, I decided to get back to being fit while waiting for heart surgery (ablation). I would get my fitness back up and get back on the pitch. Unfortunately I was cut short, as the League need confirmation that I was fit and healthy enough to play full contact – something that until after ablation was not advisable or possible.

I never really thought about being resuscitated or the extremity of the condition. However when it struck down a 16 year old GAA player, I started to get frustrated and depressed. My biggest struggle at the time was my own head. I resented being told I couldn’t do this or I wasn’t fit enough. I turned on team mates, and found myself on the bench for my own safety – but not that I saw it that way. I became angry and constantly frustrated at the ‘concerned’ attitudes of others and the constant waiting for the ablation; all the while counting the young people in Northern Ireland who were losing their lives to Sudden Death Syndrome. Why did I have to live? 

This was picked up by my friends and family and I needed focus. My housemate (who lost a friend a few years previous to WPW) told me to get in touch with CRY and see if I could help raise awareness in Northern Ireland.

The Carrickfergus Knights where starting the 2010 season and decided to wear the CRY logo on our merchandise t-shirts (left) to raise support and awareness around the League as a reminder that even the fittest were vulnerable. I also started talking to people in CRY and reading accounts on the website and speaking to my local GP.

On the 9th July 2010 I spent 4 hours in surgery. Everything went according to plan and I started rebuilding my fitness.

Again, my issue was my head running over the procedure that I had been told about and read about; but I tried to not let my nerves get the best of me. I’d never had surgery before and my first time being heart surgery had me worrying. The best way I could deal with the worry and nerves was that I had the support of family and friends and I was in the hands of professionals.

Just recently I travelled back to Limerick University and played my first match after two years – on the same pitch against the same team (right). There was no Hollywood entrance; it was a hard fought game and at times I struggled both emotionally and mentally.

I was fearful and hesitant, but by the end of the match I had made it back on the pitch and scored the Knights’ only touchdown of the day. To some it was just a game, but for others and myself it was a positive step to getting back to normality and closure.

I struggled emotionally and mentally over two years and at times I really didn’t deal with it too well, if I even dealt with it at all. I still have a lot of unanswered questions and some frustrations, but in all I owe my life not only to the Red Cross and the Royal Hospital Cardiologists (Dr Roberts); but also the non-professionals – my family and friends, the Carrickfergus Knights and most of all my girlfriend at the time, Mel, who went through the daily motions and emotions and sat through seven hours of surgery and recovery. Words can’t express my heart-felt gratitude.  

Gary McElkerney

Pictures supplied by Paula Shone and Ariane Boudias

December 3^rd 2010 started out as any other normal day (although, when I look back now it’s as if the day was already planned out). School was closed as the weather had been bad all week and buses couldn’t get through. I had been out at work that morning but as the snow was so bad I decided to return home. Dan was still in bed at 11am which is a typical teenage thing to do! I got him up and he was fit and healthy as usual as he played on his Xbox. I got a call from an elderly lady asking if Daniel would clear the snow from her path and he said, ‘sure’. The path wasn’t very big and the snow was soft and easy to shovel away. I went inside and left him to it. It took him about 10-15 minutes and he had done a lovely job.

We got into the car; Dan didn’t show any reason for me to be concerned. As we started for home Dan said, ‘my feet are freezing!’ which was normal in these weather conditions. He then began to make heavy breathing noises and, although he wasn’t shaking all over, I thought he was having a fit. I stopped the car and tried to bring him round but he had gone completely grey and wasn’t responding. I knew then this was very serious and in the next few seconds I made a decision that probably saved his life. I drove straight to our local doctor’s surgery; it only took a few minutes, but thought it would be quicker than an ambulance. He was now slumped in the seat and I couldn’t feel a pulse. Again, I tried my best to bring him round but there was no response. I ran to the surgery doors and found that they were locked… it was lunchtime, so I continued to the back of the building only to find another door that was also locked. In panic, I hammered on both doors and then ran back to the front of the surgery where our nurse practitioner (Sandra) had come out to see what the noise was about. I screamed, ‘please can you help my son, he’s in the car!’ seeing the look of urgency on my face she followed me to the car park. She opened the door and felt for a pulse, then said, ‘we have to get him out of the car. Can you go back in the surgery and call for Sally?’ I did this quickly and Sally came rushing out. By this time, Sandra had managed to pull him out of the car and lay him down in the snow. Dan being 6”1, it must have been a struggle for her. She was performing CPR and this is when my strength vanished and I fell to pieces. Thankfully, our surgery has a defibrillator which had been supplied through previous fundraising, and that was used to bring Dan back. The doctor arrived back from his lunch and immediately assisted. I called for an ambulance and was told that an air ambulance would be sent too. I called my husband and he was there within minutes, unable to believe what he was seeing; our 14 year old son with two nurse practitioners and a doctor surrounding him with a defibrillator on his chest. 

Dan started to respond but was fitting constantly. The ambulance took 25 minutes to arrive because of the treacherous road conditions. The air ambulance couldn’t land close enough because of the snow, but the crew came running to assist. I travelled in the ambulance with Dan and the whole time he appeared to be fitting and fighting for his life. We arrived at the hospital in Lincoln where the doctors were waiting for him. I was told to wait outside the room until a nurse came to take me to the relative’s room. I was completely numb with shock as I waited for my husband Dave.

The doctor came to see us and explained that they had settled Dan and heavily sedated him, but we could go and see him. What we saw was a horrific scene; Dan was laid there with tubes and pipes coming from all directions and a ventilator breathing for him. Doctors said they had to take him for a brain scan and they quickly whisked him away.

My daughter, 15 at the time, arrived completely shocked and devastated that her brother, her best friend, was now fighting for his life. It was a waiting game to find out what had happened, but the team of doctors and nurses were fantastic. They came back to tell us that his brain scan was fine but they were unsure what to do with him as Lincoln County had only an adults intensive care unit and they were waiting to find out where they could transport him to. A bed was available at Alder Hey in Liverpool but they were worried about getting him there due to the weather. Eventually they decided that he was big enough to be treated as an adult so they kept him in intensive care at Lincoln. 

After about 12 hours heavily sedated they tried to wake him and he started to come round but they were not happy and decided his body needed longer to recover so sedated him for a further 24 hours. We were worried that he could have suffered brain damage as we were unsure how long he had been without oxygen and we still didn’t have a clue what was wrong. They gave him drugs to rule out any infections, viruses, meningitis etc. We were told to go home and they would wake him in the morning.

We arrived at the hospital just as he was coming round; he saw us and started trying to pull the tubes out. Dave asked him if he knew who we were and he nodded, after a short while they removed the tubes from his throat and he was then able to speak. There was no sign of any brain damage as he asked what had happened and why was he here. His strength was amazing he was joking and laughing within minutes of coming round. Although he was experiencing short term memory loss. He spent the rest of the day in intensive care as the results from numerous tests were coming back clear.

They then decided that it must be his heart so he was transferred to the coronary ward. Again this was an adult’s ward so he was put in his own room. He was very comical throughout although had no recollection at all about his experience.

The next day he was transferred to Glenfield Hospital in Leicester where we spent the next 3 weeks. He had lots of tests including an MRI scan. His consultant came to see us and said she suspected Dan had hypertrophic cardiomyopathy and his heart muscle was slightly thicker than the normal 11mm. We had never heard of this condition before and were then told that it was probably hereditary so the rest of the family had to be checked. My ECG and echo were suspicious; Dave and my daughter Charlotte’s were fine. I was sent for an MRI also.

Dan was fitted with an ICD as he had suffered a cardiac arrest it was the safest option. We were released from hospital the day before Christmas Eve, we couldn’t have asked for a better Christmas present. Since then my MRI scan results came back normal and Dan’s biopsy has confirmed cardiomyopathy. We are waiting for an appointment for great Ormond street now to see if Dan has a defective gene before they investigate my husband and myself further to see if either of us are carriers.

We were extremely fortunate that day that everything went in our favour, the immediate response, the professionalism of our surgery staff, the snow and the fantastic care at Lincoln and Glenfield hospital.

Dan is a keen footballer and a very fit lad, this could have happened out on the football pitch and we probably wouldn’t have him here today. We had absolutely no idea that up to 12 young people die each week from undiagnosed heart conditions until we found the CRY website. This website has helped us so much and I would like to thank you for the great work that you do. We are currently fundraising to support your charity.

My condition came to light at the end of 2008 when I was 34. I’d been to the doctors to discuss these strange palpitations and dizzy spells I’d been experiencing but was sent away and told it was due to “stress”. This seems to be the usual response from a GP the first time you report these symptoms. I remember thinking, I didn’t even know I was stressed but perhaps I was and this was how my body was coping.

Fitness wise, I was reasonably active. I swam and ran every week and generally felt well, so wasn’t worried that this was anything more serious than stress related palpitations.

After a routine trip into hospital to have four wisdom teeth removed under a general anaesthetic, the nurses told me they had trouble stabilising my heart rhythm when I was in recovery. Once back in my hospital room, I was advised to see a cardiologist to ensure that everything was fine.

Again I wasn’t too concerned but thought I would mention it to my doctor when I was fully recovered.  The next evening I was home, in bed recuperating when my heart started to behave very strangely. It began flipping, jumping, and felt like it was falling over itself. A strange way to describe it but it’s how it felt. It would flip and felt like it was stalling. I felt dizzy, sick, scared, as if I was going to fall unconscious. I rang the emergency medical line and they told me to call for an ambulance who took me straight into hospital. From there they referred me to a cardiologist who over a period of weeks carried out a series of tests; a stress test, echocardiogram, an MRI of my heart and I had to wear a 24 hour holter monitor etc.

The results were in – the good news was that structurally my heart was fine, but the holter monitor found something. It was a run of tachycardia around 250bpm – it was then that I received the diagnosis of RVOT–VT, a benign heart arrhythmia, although sometimes frightening for the sufferer. I was sent home and told to see how things go and to try beta-blockers.

For some people beta-blockers are great and work wonders, but they made me feel dreadful, tired and depressed so I came off them. As time progressed the symptoms got worse and having felt like I’d exhausted all routes of medical help in my local area I went online and came across the London Bridge Hospital website and from there contacted an Electrophysiologist who felt confident that they could help me.

After my consultation and more tests, my first ablation was booked. I’d read up a little about what was involved but I can still remember shaking when I was getting ready in the hospital room. All kinds of things were running through my head; will it be painful, will I survive, what if it doesn’t work, how long will it take?

I was given a huge gown to wear, one that has loads of pockets that can be pumped full of warm air to keep you comfortable when you’re in theatre. I looked pretty funny and my husband and I were joking about it, he even took a picture of my theatre outfit!

As I walked down to theatre I remember thinking I hope this is the end of all the problems and that my life will return to normal. I couldn’t believe that my quality of life had changed so much in such a short space of time. RVOT-VT had meant I was no longer able to run or exercise without feeling utterly drained and ill afterwards. My arrhythmia was daily and left me feeling weak, ill and unable to concentrate on anything. I had chest pains and sleeping had become a problem too. I couldn’t sleep on my left side and would suddenly wake gasping for air. So, despite my fears of going into theatre I focused on my future, one that would allow me to go on to start a family without being plagued with these symptoms.

Everyone involved in the procedure were amazing. They helped me onto the theatre bed and began attaching the leads, which they use to monitor your heart throughout the procedure. I was warm and comfortable. They gave me a sedative to relax me and I actually fell asleep a few times during the procedure. I also had an oxygen mask.

They made an incision in my right groin into the femoral artery which is how they get the wires up into the heart chamber. I didn’t feel any pain. They would stimulate the heart with electrical current so they could see the problematic areas on the monitor and know where to ablate. I could feel some pressure in my chest when they were stimulating the heart but after some more sedative I drifted off to sleep.

Two and half hours later I was back in the hospital room and was elated that it was all over.

After about eight months it became apparent that my particular RVOT-VT would require a second ablation. So I was back in hospital again and this time the procedure took over four hours. I don’t remember this one as I was blissfully sleeping throughout, but was told afterwards that there were multiple sites that needed treatment. Recovery from ablation is very quick. I stayed in hospital overnight to ensure that my heart was happy and that the incision in the femoral artery had closed. The next day you’re home and on your way to a feeling better. I took a few weeks off work to rest.

It’s been over a year now since my last ablation and I’m very pleased with the results. My heart is so much better. It’s been a long emotional journey, not just for me but for my entire family. I’m due to have a check-up in the next two weeks but I feel confident about the future and know that I shouldn’t be frightened of this condition. I’m looking forward to starting a family and living a healthy happy life.

Hi, I got diagnosed with WPW after nearly dying giving birth to my son.

I had suffered with palpitations for years, but nothing was done about it.  Then, whilst I was pregnant, the attacks became more frequent, and when I told my doctor I was given a 24-hour heart monitor to wear.  After wearing the monitor, I was told that I was fine, so I just carried on.

27 hours into labour, my heart started racing.  I couldn’t breathe and my lungs started filling with fluid.  I was rushed for an emergency c-section, and my son had to be resuscitated as his heartbeat had dropped because there wasn’t any oxygen getting to him.

The next thing I knew, I was waking up in intensive care on a ventilator, being told I had this condition WPW.  What a shock that was.

I was put on Verapamil for 3 months, and then I had a catheter ablation - which I might add was very painful.

That was 3 and a half years ago, and I have been fine since, and so is my son.

MedicAlert Promotional Offer

It is recommended that anyone with a hidden medical condition carries a form of identification detailing their condition and any medication they are on. This could be in the form of a card placed somewhere visible in your wallet/purse, or an identification bracelet, such as a MedicAlert bracelet.
MedicAlert is the only registered charity that provides a life-saving identification system for people with hidden medical conditions and allergies. Each member receives an Emblem engraved with their main medical condition, vital details, a personal ID number and a 24 hour emergency telephone number allowing emergency or medical professionals to access their details from anywhere in the world. This 24 hour emergency service is housed within the London Ambulance Service, where trained staff relay your full MedicAlert emergency medical record to the first responder.

Wearing Medic Alert identification means in an emergency, medical personnel have instant knowledge of your medical condition and with one phone call to the emergency number, access to your emergency medical record, along with information such as your name and address, doctors details or implant information after quoting your ID number and clearing security checks. This 24 hour emergency phone line has an annual charge of £25. Full details of the caller are taken, including the nature of the call and the respnse given,

When joining MedicAlert or updating medical information, calls are dealt with by trained nurses, who take and assess all your medical information to ensure it is correct and then decide what information needs to be included on the embelm. MedicAlert has a wide selection of emblems to choose from, with prices starting at £19.95.

Due to the importance of being able to quickly identify your condition in an emergency, myheart has been working with MedicAlert to put together a promotional offer for our members.

MedicAlert is offering a free stainless steel classic bracelet (worth £19.95) or £19.95 off any other emblem in their range to myheart members. To receive this offer quote the discount code CRY1995. The offer can be redeemed online, by post or by phone.

The annual membership fee of £25 still applies. For more information about MedicAlert please visit www.medicalert.org.uk.

Emma has an ICD and she has found having a MedicAlert bracelet helpful .

For Long QT Syndrome: http://www.sads.org.uk/drugs_to_avoid.htm or http://www.qtsyndrome.ch/drugs.html

For Brugada Syndrome: http://www.brugadadrugs.org/

It is very important that you tell anyone that prescribes you a new medicine that you have a heart condition, so that they can check it is safe for you to use!

If you buy over-the counter medications, make sure you tell the pharmacist as well.

Remember – if you have any doubts about what you are taking, seek medical advice!

If you have been diagnosed with a cardiac condition and you have been told that you should not take part in sport anymore, it is very important that you follow your cardiologist’s advice. This is because some cardiac conditions can be made worse by exercise. However some people who are diagnosed with cardiac conditions may still able to exercise, but at a gentler level than before. This was what happened to Joseph.