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.