Naomi Fear’s Story

Hi, my name is Naomi and I am 15 years old. In the last newsletter I wrote about my experience of living with RAS and about having an ILR (insertable 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 fl oor 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 fi rst 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 fi tted and, fi nally, 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.

Naomi Fear Dorset

Note: If anyone wishes to talk to Naomi about her experiences, then you can fi nd her on the youth message board, which is getting busier and busier. And, mums, there is no need to worry who is talking on the board as it is moderated.

Naomi’s family at this year’s STARS Conference

STARS would like to say thank you Andrew, Julie and Naomi for your continued support, it is very much appreciated.

It was great to be able to put faces to the names that have, over the past months become like family. Unfortunately Rocco and I didn’t manage to get to the conference until late morning. Laura whisked me away to do my podcast, then it was lunchtime! I missed the debate about who should be running blackout services but, having been inspired by Julie and her brave family, I intend putting my case to the conference next time around!!! I am passionately in favour of having a specialist centre with all the relevant departments, personnel and patient history records under one roof – a Rapid Access Blackout Clinic, of course!! Having done the rounds of four Newcastle hospitals for more than eleven years with still no diagnosis, I feel more than well qualifi ed! I am also spurred on by the fact that while Julie, her father and her daughter were speaking about their own journey to a diagnosis, you could have heard a pin drop in the hall!! We do have a voice and we can and will make a difference.

Joan Laamaim Newcastle upon Tyne

David and I travelled down to this year’s STARS day at the Conference. We had arranged to meet up with Joan, Carole and Julie from the Message Board and, of course, all the STARS team. When we were asked if we could do our ‘bit’ for the fi lm crew, we were more than pleased to tell Jennifer’s story, enabling us to let others know that syncope is not the end of enjoying life, and that with a little ingenuity and preparation, then school and any clubs or activities can continue more or less as usual. We all found each other after we had done our fi lming stint and had a walk around all the displays, checking out what is available in the medical world to help syncope. After that we were off to lunch and a good old chat. It was just like meeting up with old friends, and like old friends we just took up where we had stopped chatting on the board! Unfortunately we had to leave fairly early as we had a long drive back to Scotland, but we will be back next year if we possibly can.

Jane Mackay Glasgow

Those of you who ‘chat’ on the STARS message board may recognise the names of the ‘Syncope Sisters’ who were among the founding members of the Board. From left to right: Jane Mackay, Carole Quinney, Joan Laamaim, Julie Fear.

STARS STARSConference200 Conference 2008

STARS conference for 2008 will be held on Monday 20th October at the Hilton Birmingham Metropole Hotel. Please put the date in your diaries and come and meet other families in the same position as you. A full agenda and more information will be found in the Summer 2008 Newsletter. Details for making an early booking will be found on the STARS Website etc www.stars.org.uk by end of March or visit www.heartrhythm.org.uk. Contact Nyree Sherratt on congress@stars.org.uk or call 01789 451831/2.