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.

Debra Whiting

Living with right ventricle outflow tract tachycardia (RVOT-T)

I was always really sporty when I was younger. I used to be in the netball team at school and represented my county at swimming and horse riding. I did occasionally used to get a flutter in my heart after I had really exerted myself but I never really thought anything of it.

Then one day in October 2005, nurse when I was 23, I had just finished riding my horse and my heart started feeling like it was skipping a beat. This carried on into the evening and I started to get worried. I went to the doctors and they told me it was nothing to worry about and I should just ignore it.

But as the weeks passed it got worse and worse. I was getting palpitations almost constantly which made me very light headed and breathless. One day it was so bad I took myself off to casualty.

They took an ECG and said that I was suffering from ‘ectopic beats’ which basically means that your heart has a second pacemaker which ‘fires’ off a beat out of sync. But still they told me ectopic beats were common and I shouldn’t worry. I was starting to get so frustrated as no doctor seemed to want to listen to me or take me seriously as I was ‘too young’ to have a heart condition.

I felt so ill every day due to the constant palpitations that I had to give up work and spent most days in bed due to the light-headedness and sickness I felt due to my heart beating irregularly. This was a very low point for me as I felt that I was never going to live a normal life again and I still didn’t know what was wrong with me so there was no chance of a cure.

I ended up in casualty again just after Christmas as I was close to fainting. This time I had to do a 24 hour ECG and they said I was having very frequent PVCs (premature ventricular contractions or ectopic beats) and was also having short runs of Ventricular tachycardia (which is a dangerous heart rhythm). I was kept in hospital for 2 weeks but I was still a mystery to the doctors as they didn’t know what was causing the irregular heart beat – they just kept asking me if I had taken any illegal drugs which of cause I hadn’t!

Finally they referred me to someone at Papworth Hospital who turned out to be the most amazing doctor. He diagnosed my condition straight away. It is called right ventricle outflow tract tachycardia (RVOT -T) which is a very rare condition that mostly affects middle aged people. It is not life threatening (so I am told!) but it can greatly affect your quality of life.

I had my first ablation in January 2006 which unfortunately did not cure the problem. I was put on the waiting list and had a second ablation in September 2006 and since then my palpitations have been greatly reduced and I am back living an almost normal life. I can’t exercise like I did when I was younger as I find that this can aggravate it but I like to do lots of walking and pilates to keep me fit.

When I first got ill I was so frightened and I had no-one to turn to and no-one understood what I was going through. Even the doctors didn’t believe me and I had to really fight to get taken seriously. It really should not be this way and it makes me so angry that doctors don’t take young people seriously, especially as some of these conditions are life threatening!

I am so grateful to the doctor at Papworth Hospital for taking me seriously and giving me back a life again. I have come to terms with the fact that I will probably never be a competitive horse rider but getting ill when you are young makes you realise that you should appreciate your health and everything good you have in life and not take anything for granted.

I am hoping that this story will help young people who have heart problems realise that they are not alone and if they are not being taken seriously be a doctor they should not give up but persevere (or get in touch with CRY) until they get an answer.

Tracey Duncan

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

2002 was the best season of my career in terms of development; I represented England at the Commonwealth Games in Manchester, and also Great Britain at the European Championships in Munich, in the 400 metre Hurdles. So, 2 years later I felt ready to qualify for the Great Britain Olympic Team. However, it wasn’t to be.

From the start of the track season I struggled to run times that I had easily run in previous years. After months of frustration I visited the Olympic Medical institute (OMI), at Northwick Park Hospital. Immediately I was referred to Dr Greg Whyte and his team, who ran the CRY centre there.

I figured it was just a routine check. Greg and Mat discovered an abnormality with my heart rhythm while I was on the treadmill test and that same afternoon Greg took me to see the top cardiologist there, Dr Nigel Stephens. The initial thoughts were that I had what was commonly known as ‘sudden death syndrome’. I can remember Dr Stephens telling me this and immediately I thought he was being a bit dramatic and taking precautions by telling me not to run. I mean, I was the fittest person I knew and here he was telling me that I head a problem with my heart! However, as he continued my ego gave in to my brain and then fear took over – the tears soon followed.

After weeks of further tests and an MRI scan I was told by Dr Stephens that I had right ventricle outflow tract (RVOT) – a less potentially – fatal problem than was initially thought. What was happening to me was that my heart was beating very fast at times, followed by a very slow beat. The abnormality of the heart rhythm was obviously a worry – track and field was out of the equation; devastation for any elite sports person.

I was given a course of medication, which after around 8 months had not cured the problem. After consultation with Greg, Dr Stephens and Dr Roberts (another leading cardiologist), it was suggested that I undergo an operation. All the doctors involved worked tremendously hard to get this operation completed as quickly as possible. It was only a few weeks of waiting before I was admitted for surgery, to be performed by Professor Peters and Dr Stephens.

The operation was radiofrequency ablation and was used to kill the dead tissue in the heart that was causing the problem. It worked.

The moment when I was told that I was healed was almost as fear-provoking as the moment when I was told I was ill. Why? Because all of a sudden I was forced to make decisions that I had previously taken for granted. Did I want to continue with track? Was I prepared to start all over again? What would I do if I quit?

For a while I did quit track and took time to set up my academic career – I work in marketing now. However, it is hard, if not impossible, to get track out of my system. I started training again at the end of 2006 and on 8th July 2007, I ran in the 4×400 metre relay for my athletic club, Woodford Green, for the first time since 2004. It was the slowest time I have ever clocked for the distance and even slower that most of my 400m hurdle performances but, strangely, I enjoyed it and I was proud of myself. It’s hard to explain how I feel now or how this entire situation has affected me because I still feel as though I am getting over it. Physically the body has healed remarkably quickly but mentally the battle continues. It has taken me a while to park the memories of how good an athlete I once was and, honestly, sometimes these thoughts still haunt me. For now I am hopeful that things will fall into place for me in the future. I have my marketing career to focus on and I have discovered there is so much to do when you don’t train 6 days a week!

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!