STARS Patient Information
Hi, my name is Naomi and I am 15 years old. In the summer 2007 newsletter I wrote about my experience of living with RAS and about having an ILR (Implantable Loop Recorder) implanted to record my heart rhythm.
I had the ILR in May and on 8 July 2007 I had an attack. It was a Sunday morning and I got up because I was going to work. I let our dog Jake out in the garden, made a drink and let Jake back in the house. I started to feel funny, so I came into the living room to sit down and put my head between my knees. But that made me feel worse, so I lay down on the sofa and can’t remember what happened after that. When I woke up, my mum, dad and my sister were there. I lay on the floor for ages then went to bed because I felt very ill and tired.
On the Monday mum phoned the hospital because I needed to have the information downloaded from my ILR. We all hoped it had recorded something. They wanted us to go in that day but I had work experience and didn’t want to miss it, even though I still didn’t feel well. So we arranged to meet Ali my arrhythmia nurse at 10am the next day so they could make sure I was OK and see what my ILR had captured.
My mum was very nervous but I was OK. Dad sat in the waiting room while mum and I went in and told Ali what had happened. The technician then put a wand thing on me and said, “We’ve got it”. She said that I had had an attack at 8:45 and my heart stopped for 33 seconds. I had 3 escape beats and then it stopped again for another 12 seconds. My mum started to cry: she was sad for me and upset that she had passed RAS on to me.
Ali then phoned my consultant, who is an electrophysiologist (a heart rhythm expert). He was moving house so was not at the hospital but he made a special trip to see me. He was very quick and was there within an hour. He told me I needed a pacemaker and needed it quickly – so it was arranged for Thursday 12 July.
I was pleased because it would mean no more attacks. My mum hasn’t had any since she got her pacemaker: she is so much happier now, because she does so much more instead of sitting in all the time. She has had blackouts all her life and it made her so unhappy.
I was first on the list on Thursday and my consultant said it was best for me to have an anaesthetic as it takes longer to put in than an ILR. I was only in hospital for one night; poor mum stayed with me and had to sleep in a chair. Everything was explained to me – why I needed a pacemaker, what sort, where my scar would be and what I could do afterwards. I didn’t have any questions because they told me all I needed to know, so I was quite happy by the time I went to theatre. I was back in my room before I knew it and was absolutely starving.
I came home the next day. A week later, I went back to my part-time job and so far so good – I haven’t had any problems.
I now share my experience of suffering with RAS, having an ILR fitted and, finally, being given a pacemaker with everyone on the STARS youth message board. I have a few members whom I chat to but it would be nice if one or two other young people joined in.