Living with long QT syndrome

Hi, my name is Louise.

It all started in 1990 when I was 8 yrs old. I woke up hearing an alarm clock and realised it was my mother’s for work, so I got out of bed and went to turn the alarm off. When I went into her bedroom I turned the alarm off and tried waking my mother up but she did not wake up, so I then went into my grandparents room to tell them my mother wouldn’t wake up.

After that I didn’t see my mum ever again – she had passed away at the age of 30.

As I got older, I was more curious about what happened with my mum because my family was saying my mum just died in her sleep and I was confused because I thought “How can you just die in your sleep?”

So time passed. Then on August 7th 2000 I got a phone call saying my brother Daniel died in the shower – he was 23. Apparently he had just got out of bed and gone into the shower and collapsed and died. I didn’t know what to think – I was in shock…

At this point I moved back to England with my dad, as we had been living in Australia.

So after another horrific thing in my life had happened, it was scaring me because all my close loved-ones were dying for no reason! So I decided to go to the doctors and explain to them what had happened to my close family. These two deaths had happened in Australia so my mother and brother had not been registered at my doctors in the UK. The doctor was concerned and he sorted me out an appointment to go and see Dr Bowes at Northern General in Sheffield.

I had the ECGs done, the treadmills done and also the standing and sitting down thing to check my heart, but still came up as OK. But I also go dizzy a lot – like when you stand up really quick and you can go dizzy at times – but I go dizzy while I am washing the pots or something! So Dr Bowes decided to put me in for the electrophysiological testing where you are sedated and have a needle in your groin and they thread a thin tube through your vein up into your heart and then they experiment with different drugs to get your heartbeat going fast and slow….

As soon as I came out of theatre Dr Bowes came up to me and said, “Well we see you do have long QT syndrome and you will definitely need an ICD implanted ASAP.”

I was crying my eyes out, thinking “My life is over now!” Also feeling sorry for myself “Why me, why me…?” Simple things like going on fast rides and playing sports is going to restrict me a little bit and I also have two children so they have a 50/50 chance of having this condition.

So 6 months later I had this ICD (implantable cardioverter defibrillator) implanted and now I think if I didn’t have it I would be scared for my life. I feel very secure even though nothing is 100% guaranteed – but it helps hugely.

Now my children are undergoing treatment, but so far their tests have come back OK. I also had a blood test to see if they can find this faulty gene and if they do it will be easy to diagnose my children and other family members for this condition. But up to now I’m just enjoying life with my children and hope for the best that my children won’t have this condition.