Nicola's Story
My name is Nicola and I am 17 years old. I was diagnosed with RAS when I was 2 years old and it has been part of my life ever since. I can't really remember what it was like when I was younger to live with RAS because I was too young to understand, but often my Mum tells me how hard it was for both her and my Gran, who lives next door, anytime I had a seizure my Mum couldn't watch, as it was so hard for her to watch me go through this in front of her and she knew there was nothing she could do but wait for me to breath again. When I started school I was still having seizures, but when I turned seven it was as if the seizures had "disappeared" I didn't have any for 2 years and then one day when I was in primary 6 I was at gym and was running backwards, I tripped over, and took a seizure. I was so upset because it was then I realised how embarrassing it was for me to have a seizure in front of all my school friends "How would they understand?". After that they came back with vengeance I was having seizures and was also becoming incontinent, during them which was even more embarrassing.
My Mum then heard from a doctor, who was doing pacemaker research at the time, she asked my Mum if she would let me be fitted with a pacemaker as part of the research. I then had a tilt test, which I took a seizure on, and my heart stopped for 35 seconds and I also the king of hearts monitor fitted, but didn't get a recording. My Mum eventually refused to be part of the research.
When I started secondary school I was meeting new people and new teachers, I had to explain to them all that I had RAS, and what to do if ever I was to take a seizure when I was with them. All of them where very understanding, but I however was very self-conscious of taking an attack in front of anyone at school in case I became incontinent.
While I was at secondary I was fitted with an implantable heart monitor, this was to monitor my heart and record any attacks that I took. The doctor wanted to fit me with this before I got a pacemaker and if I got a recording on that she would be willing to fit me with one. The day I was about to get out of hospital the nurse was taking off my dressing of where the monitor was fitted and I had a look at the stitches and went into a full blown attack. As I grew up I thought the pacemaker would give me a better quality of life as I would be able to drive, get a job without worrying about taking a seizure in front if any of my colleagues, my Mum wouldn't have to worry about me going out in the town with my friends and to party's etc...... I spoke to my mum about this and she agreed with me, so we decided to make an appointment to see the same doctor again. I had went to Yorkhill that day with my hopes built up thinking that she would agree to have a pacemaker fitted, because she was desperate to fit me with one way back when the research was taking place. When my Mum and I went into the doctor's office, I was explaining to the doctor about how I thought the pacemaker would give me a better quality of life, because of the above reasons. The doctor went through all the risks of the pacemaker, but at the same time I was telling her the good points of it, she said that she would need a second opinion from another doctor before agreeing to fit me with a pacemaker. I left Yorkhill that day feeling very let down.
A couple of weeks later I got an appointment through to see a doctor in Stobhill Hospital, Glasgow, this was for the second opinion. On the day of the appointment I was very excited, but also very nervous. As I sat in the waiting room, thoughts were going through my head, "What if this Dr said no that it wouldn't be a good idea?". A short time later my name was called, I was about to find out! As I sat in the doctor's room, speaking to her and explaining how I felt about having a pacemaker, I felt my hopes beginning to build up again, she was very understanding and more or less said that she thought it would be a good idea too, but she would have to speak to the first doctor again and would also arrange for another tilt test for me. A few weeks later we heard from my doctor, who said that the second opinion we had got was the same as what she thought and that it wouldn't be a good idea for me to get a pacemaker. I was really angry and felt cheated, because of the build up of hopes I had got from the Doctor at Stobhill. My Mum and I then went to my GP, who wrote to the doctor and wanted a third opinion. Trudie from STARS advised us of Doctor in Southampton, it was a number of miles away, but I was determined to go. We then got an appointment through to go to Southampton, my Mum and I had to arrange a train to get there and also a hotel to stay over night, I also had to take time off college to travel down.
The day came for us to travel and we boarded the train at Glasgow Central Station, on the 9 hour journey, my Mum and I were taking notes of what we were going to ask the doctor, and I remember saying a wee prayer hoping that this wasn't going to be a waste of time. We finally arrived at Southampton, both very exhausted after the long journey. We had to get a taxi from the station to our hotel and finally got settled round about 10pm that evening. The next morning when I woke up I was really excited. We arrived at the hospital and were seen straight away, I explained to the doctor everything I had told the previous doctors and he didn't see a problem for me to be fitted with a pacemaker, I then had a scan of my heart, to see if everything was ok for me to have a pacemaker fitted, thankfully it was. The doctor then told me that he would contact my doctor and let her know, I then thanked him and we had to run to catch the train.
We finally got to the station and caught the train in no time at all. I left Southampton feeling very happy couldn't wait to get back home to tell my family, especially my Gran, who had been praying every night for me. I then made an appointment with my doctor and she told us that the Southampton doctor had been in contact and told her his opinion, it was then that she agreed to fit me with a pacemaker. A few weeks later I got my date through to go in to hospital.
August 2002 finally came and I went in to Yorkhill Hospital, Glasgow. I was fitted with a pacemaker and remained in hospital for 4 days. When I arrived home it took me 2 weeks to recover and I felt a whole lot better. I returned to work and no longer felt self-conscious about taking another attack.
I have now started my driving lessons and I feel that the pacemaker has DEFINITELY given me a better quality of life!