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

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, ECHO 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 right ventricle outflow tract ventricular tachycardia (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.

Claire Herridge

Living with left ventricular wall abnormality

A year and a half ago, when I was 34, I was out running when I experienced heart palpitations, chest pain and shortness of breath. I was taken by ambulance to Southampton General Hospital.

This was a shock to me as I am a PE teacher and have always lead a reasonably healthy and active life. After a few hours in hospital my symptoms had settled and I was just about to be sent home when a doctor asked for an ECG as he still wasn’t happy with my heart rate.

This was taken and it showed a massive abnormality. After several ECG’s, echocardiograms and then an MRI scan, I was diagnosed with having a large mass in the left ventricular wall of my heart.

This resulted in me having open heart surgery to have the mass removed. The surgeons said it was the size of a tennis ball and if I hadn’t recently seen the photographs of the operation I wouldn’t have believed it myself….. but it really was that big!

The mass was benign and I am now feeling good and am hoping to start running again soon. I take beta-blockers every day and have resumed my job as a PE Teacher.

The doctors still don’t know why this mass occurred and apparently the condition is extremely rare, but they continue to research as to why and how it occurred.

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.

Heart medicines

If you have any questions about the medication you are on, please ask your GP, cardiologist or pharmacist. The below is just a guide to explain about some of the commoner treatments that can be used.

1. Diuretics

If you experiencing a condition called congestive heart failure, you may find that you have more fluid in your body. This can in turn result in breathlessness and swollen ankles, as fluid builds up in the wrong places (such as your lungs or your legs) as a result of the heart being weak. Diureticshelp relieve these symptoms by making your body get rid of the extra fluid. Because of this, when you take diuretics, you will usually find that you need to urinate more frequently.

The names of some of the common diuretics used are furosemide, bumetanide, spironolactone, eplerenone, bendroflumethiazide, metolazone and amiloride.

2. Angiotensin Converting Enzyme (ACE) Inhibitors and Angiotensin Receptor Blockers (ARBs)

The main actions of angiotensin converting enzyme (ACE) inhibitors are that they relax your blood vessels and reduce how much fluid is reabsorbed by the kidneys. This in turn helps to reduce blood pressure. In addition, as a combined result of these and other actions, they can strengthen a weakened heart and therefore are very important in the treatment of heart failure.

As with every medication, however, ACE inhibitors are associated with some side effects worth mentioning which may affect some people. The most common are low blood pressure (hypotension) and a dry cough. If you feel dizzy or faint after starting ACE inhibitors, it may be that they have lowered your blood pressure too much. You should therefore see your doctor, as your dose may need adjusting.

About 10% of people who take ACE inhibitors can develop a dry cough. Again, you should see your doctor about this, as there are alternatives that can be used which are called the angiotensin receptor blockers (ARBs), which (have similar effects as ACE inhibitors but tend not to produce a cough). The names of some of the common ACE inhibitors used these days are ramipril, captopril, enalapril, lisinopril, fosinopril and perindopril. ARBs include candesartan, irbesartan, losartan and valsartan.

3. Beta-blockers

Beta-blockers reduce the effect of adrenaline on the heart. This results in the heart being slower, and with less force, therefore reducing its workload. You may experience some side effects when you are taking beta-blockers, including dizziness and feeling faint, which may mean that your heart is beating too slowly – if this is the case, then please see your doctor. You should not take beta-blockers if you have asthma or other breathing problems. Examples of beta-blockers are atenolol, bisprolol, metoprolol, carvedilol, propranolol, sotalol and nebivolol.

4. Antiarrhythmics

An arrhythmia simply means that the heart is not beating normally – either too slowly (bradycardia), too fast (tachycardia) or irregularly. Arrhythmias can be controlled using anti-arrhythmic drugs. Because arrhythmias are usually due to problems with the electrical impulses in the heart, anti-arrhythmics work by stabilising these electrical impulses in a variety of different ways. They can be divided into four different classes, according to the effects that they have on the heart; as you can see, some of them have multiple effects:

Class 1: stabilize the cell membranes in the heart (e.g. flecainide, procainamide,  disopyramide and lignocaine,)

Class II: reduce output from the adrenal glands, so that there is less adrenaline –  which ordinarily excites the heart – affecting it (e.g bisoprolol, metoprolol, atenolol, propranolol and sotalol)

Class III: Block potassium channels in the heart (e.g. sotalol and amiodarone)

Class IV: Block calcium channels in the heart e.g. (verapamil and diltiazem)

4. Anticoagulants and antiplatelets

If you have a disturbance of your heart rhythm (arrhythmia) which makes the heart beat irregularly, you may be more prone to forming blood clots within it. And in some people, if the heart is enlarged and weakened (such as those with dilated cardiomyopathy), they may also be prone to developing clots within it (or in some cases, may already have developed these at some point in the past). You could therefore be put on medications to prevent this happening, or to help the body dissolve clots that have already formed.

Anticoagulants make the blood thinnerto prevent clots from forming, and also aid the body in breaking up clots that have already formed by stopping them getting any bigger. Antiplatelets make the blood less ‘sticky’,  again preventing clots forming. Warfarin is the commonest anticoagulant used; aspirin and clopidogrel are two commonly used antiplatelets. Most people are usually either on an anticoagulant or an antiplaletet, but not both together as this can make the blood too thin and therefore make you prone to bleeding (although there are rare cases where both are used together).

If you are taking an anticoagulant (warfarin), you will need to have regular blood tests to ensure that your blood has not become ‘too thin’ and that you are on the correct dose. This is called an international normalised ratio (INR) test. Your INR should ideally be between 2.5-3.5, but can vary depending on your individual circumstances. Certain foods, drinks and medication can also interact with warfarin, either increasing its effects and making the blood too thin, or decreasing its effects and preventing it from thinning the blood. You will therefore be advised to avoid changes in your diet once you are established on the correct dose of warfarin. Examples include grapefruit and cranberry juice (increase the effect of warfarin, making the blood too thin) and liver, broccoli and brussels sprouts (contain vitamin k which reduces the effects of warfarin, making the blood less thin). Please ask your doctor about more information on foods and medications to avoid.

If you are taking anticoagulants, it is VERY important that you carry a card that says that you do. This information will be extremely helpful for doctors to know if you have an accident. Please click here more information on alerting people to your diagnosis in an emergency.

Remember – If you notice any side effects from your medication talk to your doctor or pharmacist straight away!