Guest post by Bob Reville
This is part 2 of the Bob’s story, you can read part one here
My friend Liam came to pick me up from the hospital. It was a strange feeling I had. A bit like the feeling at the end of a holiday when part of you doesn’t want to leave, and part of you is looking forward to getting back home. We didn’t go straight home, I wanted to call in at the shop first which we did. This is where I found out how weak I still was. I stayed there less than half an hour and then Liam took me home. I was absolutely shattered by the time I got home. I’d felt fine in the hospital, but Hey! I’d been lying in bed all day or sitting in a chair and the most tiring thing I had been doing was walking to the toilet and back. Liam stayed a while and we sat talking, but I really needed to sleep so he left me to go to bed for a bit. Margaret had cleaned my flat for me so it was really nice to come back to, so I texted her to thank her and let her know I was home, but that I was going to sleep for a bit.
When I woke up, it had gone dark and that’s when it really hit me. The hospital hadn’t been real. I woke up remembering nothing about what had happened. I had left my flat 3 weeks previously to fetch a fridge. (My friend did get her fridge in the end in case you were wondering) and nothing in those 3 weeks had felt real. But now I was looking into reality. I was back in my flat on my own with sore ribs and wounds where the S-ICD had been fitted. I got up, put the light on, looked around and I cried, I kept on crying. I cried for over an hour. Then I went back to sleep.
I was up early the next morning. There was something very important I had to do. A friend was picking me up at 10am. We got held up in traffic due to road closures which was frustrating as I didn’t want to be out too long as I knew I would get tired before long but this had to be done. Eventually, we got to Meadowhall; the first place we went was to the food court. I got shivers when I went to the spot where I had been sat, and even to this day, I still feel a little uncomfortable if I go to the food hall. To me, Meadowhall will always be the place I was brought back from the dead. Next, we went to find a security guard. We chose well as the guy I went up to introduce myself to, was Head of Security. He said 3 of the guys who had worked on me were working that day so he phoned them and asked them to come to the area where we were standing but he didn’t tell them why. They all came but not one of them recognised me. I can understand why. The last time they had seen me was 3 weeks ago, to the day, and I was laid on the floor with my clothes torn off, in a coma, having turned blue and being lifted onto a stretcher. My memory may not be quite what it was but the look on their faces when I told them who I was is something I will never forget. Nobody had told them I had survived, and the way I was when they put me in the ambulance, they hadn’t expected me to. It was quite an emotional meeting. Under these circumstances, the words “thank you” just seemed so inadequate and I really didn’t know what to say as I casually asked “Right, which one of you 3 broke my ribs?”, 2 of them laughed and the other 1 looked at me sheepishly and said “Sorry about that”. I said “Don’t worry, I’m glad you did”. Joking aside though, there were really no words to express how grateful I am to have seen these guys. I later arranged a more official visit to go out and thank as many of them as I could. One of them was a professional boxer and I later went to see him fight. He won the fight but sadly broke his hand during the fight and hasn’t fought since. We chatted for about 20 minutes or so and then they had to get back to work after posing for a few photos (for Facebook of course).
The next few weeks were a roller coaster of emotions. I tried to stay positive about things but it wasn’t always easy. I was limited to what I could do as I was getting tired very easily. I had to accept that I needed to leave the shop to look after itself for a while. I stayed home most days; Margaret popped in regularly for a chat and to make sure I was okay, and some of the neighbours would pop round. My friends would come round and someone would usually take me to the supermarket if I needed it.
I started thinking about why it had happened. I didn’t want to accept there was no reason for my SCA. I remembered a few things I hadn’t remembered in the hospital. I remembered that on a couple of occasions over the past year or so I had felt a bit dizzy; once when I was walking down the street and I felt like was going to pass out, to the point where I fell into a shop window, but I didn’t actually pass out. They were quite rare. I had remembered the palpitations and fast heartbeat I used to get occasionally, again quite rare. Previously, I had put these things down to being just something everyone gets from time to time but now I started wondering if they were all connected to my cardiac arrest. I started thinking about how likely I was to have another one and if I did, would the S-ICD do its job or not? Some days I could be quite happy and not worry about anything, others I would make myself more depressed purely by thinking too much. In the end, I convinced myself that the most likely possibility was the choking theory. I guess deep down I wanted to believe, this because to my way of thinking, if it had been brought on by choking, then it meant it was less likely to happen again and that was easier to live with, so I convinced myself this was the reason.
I sorted out some more practical things too. I contacted the DVLA and was told to send my license back. I sold the car and cancelled the insurance. They were quite helpful and told me my no claims bonus would be held for a period of 2 years and also, when I was able to drive again, having a previous SCA doesn’t affect the cost. Sadly the AA weren’t so helpful, I still had 7 months of my membership to go and as it was going to be at least 6 months, I asked if I could either get the 7 months refunded or if they were willing to put my membership on hold until I got my license back, but the answer was a very strict no, and considering I had been with the AA all my driving life, I was very disappointed with them.
I got a call from the doctors asking me to make an appointment to see someone about my medication. I needed to anyway before my sick note ran out so I made the appointment. On arrival in the doctor’s room, she made a mistake I have come to get used to. She referred to my cardiac arrest as a heart attack. Now I have to admit that before I had my SCA, I didn’t really fully understand the difference between a cardiac arrest and a heart attack, so I can’t really expect anyone else to, but I have been surprised that more than one doctor at my surgery has now referred to it as a heart attack and I am also very surprised at the lack of knowledge in general the GPs have about cardiac arrest. Not just GPs either. One thing that does annoy me a little is the way cardiac arrests are often reported in the media. I’ve known the top papers and the BBC, ITV, and Sky to refer to cardiac arrest as a heart attack at some point or another. She asked if I felt I was ready to return to work. I got the feeling that the decision was entirely down to me. In truth, I did want to go back to work. There are only so many episodes of Bargain Hunt that a man can take. In reality, though I was still getting tired quite easily and I think it would have been too much for me, especially as now I have to catch 2 buses, so I signed off for another 2 weeks.
Around this time I received a text “Hi Bby, how are ya doing. I’m working in Sheffield this week” I’m not going to say much about this person as she is a very private person so, I will only talk about things relevant to the topic I am about to discuss, but basically she was someone I had met a few years earlier. We got on well and liked each other but she lived quite a way away from Sheffield so we didn’t see much of each other. She had her life and I had mine, but she still came to Sheffield now and then; and when she did, she would sometimes stay with me on the Sunday before heading back home. This suddenly gave me another subject to worry about. Sex. It was something I had worried about when I first came out of hospital. Was it safe? Would it bring on another SCA? What if I overdid things? And the one I worried about the most, would an orgasm cause me to go into cardiac arrest? Then one night I came to the conclusion that if there was anything to worry about then surely the doctors at the hospital would have told me, so I decided to take the bull by the horn so to speak, and find out for myself. To my relief everything was fine. It still didn’t stop me worrying though. She knew all about my SCA, I had contacted her whilst I was in the hospital and we talked a few times on the phone. Sunday came and she arrived at my flat mid-afternoon. We never went anywhere when she came, she would just come to my flat, I would cook something and we would just relax, eat and watch a film.
This time we didn’t bother with the film. We talked a lot; this was the first time I had seen her since and she was obviously quite concerned and was asking a lot of questions, and I was telling her about everything that had happened. It was quite a while before either of us brought up the subject of sex and in the end, it was her who made the first move by asking “will you be okay for later?” I said yes, but I could tell she wasn’t convinced. Anyway, the time came for bed and we took ourselves off to the bedroom. We started kissing but something just didn’t feel right. I was a little nervous but I think she was a little scared too.
I should also say at this point, there were a few instances prior to my SCA where I had lost my erection, and she had already suggested I went to the doctors and ask for some Viagra, but I hadn’t got round to doing it. Tonight though, it was obviously not going to happen at all, so we just lay in each other’s arms talking. The next morning, I made another appointment at the doctors. It can be pot luck at my doctors, which doctors you can see but fortunately on this occasion, it was a man. He couldn’t prescribe anything there as he didn’t know if it was safe for me or not. He would need to contact my heart specialist at the hospital. I did get them prescribed before her next visit though. Again, I went through various thoughts in my head so I decided it was best to take one first on my own so I would feel better about them when my friend was there. They seemed to work fine so I was quite happy when she visited again. The tablet did the job, but something still didn’t feel right. It was quite a while before I saw her again. I didn’t know it, but this would be the last time I saw her. We still texted each other for a while but she never came up again and then we gradually lost touch.
It’s been over 3 years now since I last saw her. I came to realise what went wrong later, all the fears I had about sex were all perfectly natural after what I had been through, but somehow I had confronted them and overcome them, but I had done it on my own. She had exactly the same fears as me and she was scared for me, and what might happen to me. I’ll never know if I had been more open and talked about this, whether it would have made a difference or not but I had learnt a very valuable lesson, that if I was I was to have any sort of intimate relationship with anyone in the future, I would need to be more understanding of how they were feeling and learn to be able to talk about these feelings with them.
I decided that I was ready to return to work after the current 2 weeks had ended. By this time, it would be 9 weeks since my SCA. My ribs had just about healed, I still got tired a lot but I was certainly a lot better than I had been. Bargain Hunt hadn’t got any better. I’d tried changing channels but Jeremy Kyle just wasn’t an option. So, another doctor’s appointment was made. They weren’t able to let me go back to work until they had discussed it with my heart specialist, which they did and they agreed I could go back to work, but I had to start on reduced hours and gradually increase them each week, which my employers were happy to do. So, it was agreed I would work like this until the end of the year and then back to full time in January. I was also given a less stressful role on a temporary basis to help me get back into the swing of things. I did find it extremely tiring at first, especially as I still had 2 buses to catch each way. One thing I noticed straight away, when I went back to work, the company had got photos of many of the jobs we had done on site and described to make the best ones into larger photos that could be hung on walls in the office. Now when you walked into the main office, there is not only a huge photo of the Food Hall in Meadowhall, but it’s the actual area I was sat in when I had my SCA.
In 2014, things started getting back to normal. I still had minor memory problems and I would still get tired a lot more easily than before. I sometimes got panic attacks, sometimes palpitations and I could sometimes get dizzy. Often when any of these things happened, I would suddenly start to feel weak and tired for a while afterwards. On one occasion, while I was walking through the local market, I started to feel dizzy and light headed, and my heart was beating quite fast and I went to customer services and asked if they could let me sit down for a bit. They said I didn’t look good and called an ambulance for me. The paramedics did an ECG and my heart was okay but still beating fast so they took me into hospital as a precaution. The staff in A&E were really good. They monitored me for a few hours and my heart had returned to normal. They were very understanding and told me if anything like this happened again, I should always go to A&E to get it checked out if I was worried. I was to do this once more in the year and again, the staff were really good and everything was fine. Generally though, life was good. I had settled back in at work, I changed the way the shop was run, so it was entirely run by the staff and didn’t need me there much. I sold my flat. The plan was to move into the flat above the shop at the end of the year, so I went to live in a friend’s house for a few months which was a lovely place on the edge of Sheffield, backing onto the countryside. I still went out drinking and socialising, although I was careful not to drink too much, unlike my life prior to the SCA, and I was living a virtually normal life. If anything, I had become a bit too complacent and wasn’t taking care of myself as well as I should have been doing. I was also forgetting to take my medication on various occasions and not worrying too much about it. I’d got my driving license back and I had bought myself a new car.
On New Year’s Eve 2014, I moved into the flat above the shop. Then I went out to celebrate the New Year. I stayed out quite late into the morning but I was careful not to overdo it with the alcohol. I woke up about 11am on New Year’s Day. I was feeling quite tired and lethargic but I’d had a very long day the day before, so I decided today was going to be a rest day and I stayed in bed watching TV and reading. The next day I still wasn’t feeling up to much. I got up and unpacked a few things and did a bit of cleaning but generally I had another lazy day. My friend who lived across the road from my new home texted me and asked if I wanted to go out for a drink that evening and I said yes. We had a few drinks in the pub and then we went over to a place across the road that is basically a place with pool tables, table football and TVs above a shop that stays open until 6am. I was feeling a bit tired and wasn’t even feeling like having a drink and in the end I left my drink and went home. When I got home, I realised that I hadn’t had anything to eat for 2 days. No wonder I wasn’t feeling so good, so I made myself a large bacon sandwich before going to bed. Probably not a good idea as it gave me indigestion. Something else I hadn’t done, although I hadn’t realised it yet was I hadn’t taken any tablets in the last 2 days.
I woke up with a start about 8am and 3 things were all happening. I had the most horrendous indigestion (It definitely was indigestion and I knew it was as I suffer with it quite frequently due to the medication). My heart was racing very fast. In fact, it felt like it was a lot faster than it usually is when it goes fast. I was very tired and I wanted to go back to sleep but I couldn’t because of the other things happening. I tried to go back to sleep but it was hopeless. My new room has an en suite, I got up to go the bathroom and BANG! Like lightning. Literally. I can’t be 100% sure but I think I even saw a blue spark in my chest because the room was in darkness. If you can imagine taking a very severe blow to chest, but the pain and the force from the blow were on the inside, and it lasted just a split second. The force had knocked me into the wall. My S-ICD had fired! Sheer panic set in. I screamed. I found the light switch and looked for my phone. My heart was racing more than ever now. I went into the kitchen. BANG! This time there was no wall so I fell onto a chair. There was no one else in the flat. This was it. I was going to die. I was still screaming. I found the keys to the back door. The door opened onto a metal staircase which led onto a small backyard. There was a door at the back which was the entrance to a house and at the other side was a bakery which was part of the Chinese cake shop next to my shop. I stood at the top of the steps shouting. I got the attention of the Chinese bakers who came out. To this day, I don’t know if they have recovered from the shock of watching me standing at the top of the stairs in just my underpants, screaming and jumping about at them and making jerking movements when I was shocked for a third time. They certainly didn’t understand I was trying to get them to call an ambulance because I was about to die. I went back inside and I got a fourth shock. I found my phone and dialled 999. I had my fifth shock which turned out to be the final one, just as the guy who lived in the house at the back came running in after hearing my scream. I was told by the 999 operator to sit down and try to stay as calm as possible until the ambulance arrived. It was there in minutes. I felt a bit better as soon as they arrived and my heartbeat was going slowly back down again. I was taken into hospital where I was diagnosed as having gone into Atrial Fibrillation (AF). It’s not life threatening but my S-ICD didn’t know that and more to the point at the time, neither did I. I am not going to talk about my experiences with AF here as this story is about my SCA and I don’t believe it’s relevant here. Maybe one for another story- and I had pretty much recovered from my SCA when it happened. It did however lead to an increase in the number of occasions I got palpitations, fast heart beats, and panic attacks and I also started getting ectopic heart beats which, combined with my previous SCA, I found very difficult to deal with emotionally, at times. Over time, I learnt to cope with these better. I learnt to take care of myself. I take my tablets at the correct times every day without fail. I make sure I get enough sleep, I make sure I eat properly and I try to eat plenty of healthy food although I do eat plenty of rubbish as well at times, and I always make sure I drink plenty of fluids although I now avoid alcohol completely and try to limit caffeine by only drinking decaf coffee. This has gone a long way to helping me live a normal life that I now lead.
My final subject is Facebook groups and one group in particular Sudden Cardiac Arrest UK who are the reason I am writing my story. Not long after my SCA, I was talking to a friend about the lack of help and support there seemed to be for people in the aftermath of an SCA and she suggested looking for a Facebook group. I did a search and found 2 or 3 which I joined. I didn’t find these to be much help however, and in fact, on occasions, I think they actually made things worse. For a start, they were predominately American and the American Health system is completely different to that in the UK. They also tended to be about heart conditions in general rather than just SCAs, which meant I was reading posts that weren’t really relevant to mine. Combined with the American way of dramatizing everything some of the posts were actually scaring me rather than helping me. I was then invited to join a group called British Hearties. I was a lot more comfortable with this. It was British so hopefully I would get to know people closer to home who had suffered an SCA in similar circumstances to me. In some ways, this was a good group, the guy who ran it was nice, there were loads of people on it but it was a very general group; it covered all aspects of heart health and there seemed to be very few people who had suffered an SCA. There were a few helpful posts, but it was more for people with heart related issues to get together and talk about anything and wasn’t really what I was looking for.
Then I came across a group called Sudden Cardiac Arrest UK; this group ticked all the boxes. It was started by a man named Paul Swindell, who had suffered an SCA himself. It was a fairly small group which suited me and which was to be expected as the chances of actually surviving an SCA are very slim, especially if you are not near a defibrillator; and it is made up entirely of people who have survived an SCA. There is professional support available on the group, the people in the group were friendly and all the posts are related in some way or another to the subject of SCA or the SCA Group. I found the group to be very informative and helpful. It was also a very positive group. I found all the other groups to be quite negative, but the people here were different; they were all dealing with their SCA in a positive way and rebuilding their lives despite having had an SCA, rather than letting it control their lives, and I took a lot of strength from that.
An added bonus was that they held occasional meet ups. This, I was particularly excited about as I had never met anyone else who had survived an SCA before. The next one was on a Saturday in London. The distance wasn’t a problem to me as I had a friend I could stay with down there, so I decided to make a mini break out of it and spend a few days in London. The meeting was to be held in a room above a pub in Southbank. There was a small charge of £5 to cover part of the cost of the room and the buffet which was provided. The rest was paid for by SAD’s UK charity which is a charity set up to help prevent sudden cardiac death. The day of the meeting came and I was both excited and nervous, I was looking forward to meeting other people who had gone through the same as me. I was also a bit nervous. I knew some of the group knew each other already and I had come alone. However, one of the group members was staying close to where I was staying so I arranged to meet up with him the day before and that helped me on the day. At least I would know one person when I got there.
However, I didn’t need to have worried, everyone in the room was really nice and friendly and easy to talk to. It felt as if our SCAs had formed a bond between us even before we had met. As you have already read, I have had all the help I needed from my family and friends, and I really don’t know how I would have coped without them, but at the same time I was the only one who knew what I was going through and I had to deal with a lot of it on my own. Suddenly, for the first time I wasn’t alone; I was in a room full of people who had been through it as well. I found it very beneficial talking, listening to people’s stories and telling my story.
It was easier too than talking to my friends and others around me. There were many things that didn’t need saying, didn’t need explaining, because we were all talking to people who can understand them already. Everything was so positive too. These were not people who were going to let their SCA ruin their life. They had faced or were facing the many issues that the aftermath of an SCA brings, and were determined to live life to the full. I left feeling very inspired and positive, and with a bit more confidence about the future than I had before. Since the meeting, the number of panic attacks I get has reduced considerably and I am quite certain, this is due to how I felt meeting and talking to other survivors.
There is very little support available in the UK post SCA and SCA UK is providing something that is desperately needed. I have been more than happy to sit down and write my story for them. I hope that people who have had an SCA will find it helpful; that they can read it and realise some of the things they are going through are just natural and that they are not alone. Once you have had an SCA, then it never really goes away, even if you are lucky enough to make a complete recovery physically, there will always be some mental and emotional issues and it’s a continuous learning process dealing with them. I have tried to be as open and honest as possible, not just about my SCA, but about the issues I faced afterwards, no matter how well or badly I dealt with them. I hope that others will read it too and understand a little bit more about SCAs and also think about what they can do to help. I am one of the lucky ones. I was near a defibrillator and people trained in CPR. I have a story I can tell. Most people who have an SCA only get a funeral.
- Have you a business that has an external wall where an AED can be mounted?
- Would you be willing to raise funds to have one fitted or even fund one yourself?
- Learn CPR so that if someone close by you or even family and friends suffers an SCA you could perform it until help arrived. CPR won’t restart a heart that has stopped due to cardiac arrest but it will keep blood and oxygen flowing and help avoid serious brain damage.
I also hope that some of my friends will get to read this at some point and if you do, please know I appreciate everything you have done and continue to do for me.
I love you all.
NB: You can read about the meet up Bob mentions here