When I had my SCA in April 2014, I not only became a member of a rather unique club, but unbeknownst to me also part of a study that was being conducted at the hospital I was admitted to – The Essex Cardiothoractic Centre, which is part of Basildon Hospital.
6 months after being discharged, my wife and I were asked back for an interview and do a few tests. I didn’t really think much about that meeting until almost 18 months later when a video was posted into the SCA Facebook support group. This piqued my interest as not only was it a good video, but it was filmed at the hospital I was at and I recognised some of those in it! I contacted the hospital and managed to get to speak to Neil who was in the video and also conducted the interview 18 months previous.
I had a meeting with Neil Magee and Dr Tom Keeble and found out about the study they had been doing regarding extra post discharge care for SCA survivors and that I was in the study, but had been randomised into the “control” group, which meant I did not receive the extra care. I received the standard post discharge care, which as a lot of SCA survivors know, is not much.
There seemed to be a synergy between what they were doing and some of the aims of what the Facebook group was trying to achieve, so we agreed to work together for mutual benefit.
As their study has come to an end they are starting to present it to a wider audience to show the positive impact their interventions have had on survivors and their families. One of the first presentations was at the BCIS Advanced Cardiology Intervention 2017 conference last week and they had asked myself and another patient to be part of it. The other patient and his wife had received the extra care and so I guess the idea was to contrast the difference in outcomes between us.
I was asked to give my SCA experience, but as it seemed too good an opportunity to miss, I thought I’d also talk about the group a bit.
The presentation was to take place in the main auditorium and I must admit that it was a little daunting to have to go up on stage and present to a room of cardiologists, nurses and the like.
Ellie the ECTC matron was on a panel on the stage and introduced the presentation which was to be anchored by Bridget. She gave some background and then presented patient case study No. 1 – which happened to be me! I must admit it was a bit weird listening to my case being presented, and it did bring some of it flooding back. I just had a chance to compose myself and then it was my turn. I had a number of slides and I hoped to give an overview of how I had been post discharge and how I’d struggled to return to what I thought was normal. I also hoped to show that my story was pretty typical of what was relayed in the group.
World Upside Down
I started off by talking about when I was discharged that it was good to go home, but I wasn’t feeling good and that I felt like death warmed up – which was a pretty good description of what I was. I was dazed and confused about what had happened and as no cause had been found I left the hospital with just an ICD and a follow up appointment, no medications or rehab for me. Try and live life as before was the advice, but how was I to do that? My wife and I had so many questions, and unfortunately few answers, which I guess just added to the apprehension of leaving excellent 24/7 care. For me, being in hospital was easy, now the hard bit was to begin.
I showed the following picture which seemed to sum up how I was at that time with my world turned upside down and little vision of what lay ahead. I actually took the photo a couple of weeks before my event and it seems spookily like some sort of sign!
I explained how the early weeks after leaving hospital didn’t really see much improvement in the physical symptoms I was experiencing. I had a number of issues of which the main ones were a permanent headache, extreme tiredness/fatigue, concentration/focus, memory, speech/language, light/sound sensitivity and myoclonus. In time I came to realise that these were brain injury sequelae caused by hypoxia during my down time. For the headache I had taken loads of the usual remedies and began to realise that they didn’t do anything. On discharge I was given a contact number for the hospitals arrhythmia clinic and also told that if I had any other problems to go to my GP. As the symptoms I was feeling didn’t seem to me to be heart related I decided to go to my GP. Unfortunately my experience with him wasn’t that positive and it seemed to set the tone for future visits. In essence I just don’t think he got what I was experiencing, but to be fair maybe a 10 minute session is just enough time for complicated patients like an SCA survivor. Apart from another VF episode last summer I never really felt (maybe naively) that my heart was the problem with how I was. A couple of months after my event I had to be admitted into A&E due to a swollen left arm. One of the first things that was to be done was an ECG. At this point I had something extremely weird and scary happen to me, I had a panic attack. It seemed like it was an out of body experience and that it wasn’t happening to me. I’d never had one before and haven’t since and it’s something I never want to go through again, and in hindsight it was maybe a sign of something more going on.
I stated how pretty much all survivors would say they felt like they were the luckiest person n the world, having survived an SCA. I certainly did as not only was my SCA unwitnessed and I was found in time, but the person who found me, my wife, was only home because a meeting she was due at had been cancelled, and to cap it all I found out 18 months after the event that I was extremely lucky not to have been blinded in one eye as I had apparently fallen onto a sharp object that went straight into my eye! Lucky indeed, but then there are the times that you mourn for the person you once were, an existence that was taken away in an instance, one that you know nothing about and for a reason that no-one knows. The high’s of feeling the most alive you’ve ever felt and the fact that you can feel the sun and wind on your face, contrasted with the lows of what might of been and what now is, can be quite a challenge to take in, one that I call the serendipity paradox.
Before it happened to me I knew nothing of sudden cardiac arrests, and if you’d asked me I’d probably say like most people do to me, that it’s a heart attack. An SCA is quite rare and surviving it even rarer and that makes finding others who’ve been through a similar thing quite a challenge, and coupled with the fact that I felt I’d kind of been left on my own to recover, I felt quite isolated and alone.
One thing that I thought that I noticed in me was big swings in my emotions, and especially sessions of crying with little or no reason. It got so bad one day that I even resorted to writing poetry!
With the sudden/big changes it was inevitable that you change to adapt to cope with what’s happening to you and sometimes that’s not always for the best. Although I don’t think I’ve changed massively personality wise, I know I am different to how I was. I’ve also read about how others have felt they have changed, some becoming more laid back, but others more angry at the world and the people around them.
Whilst I have only suffered lightly regarding anxiety, I’m still quite wary of being in water, or situations that would render me in danger should I go unconscious because of another heart episode or ICD shock. I know of others who have it far worse and struggle to leave the house or won’t return to the scene of their event, sometimes causing them to take drastic measures.
Of course all of these changes, and especially without any help can spiral downwards into depression. This coupled with PTSD can lead to extremely tough and challenging times and for some to even contemplate the unthinkable of taking their own life. Which when you consider the lengths gone to help them survive, seems kind of crazy.
The couple of weeks around my event are gone from my memory or very hazy at best, and although I lost memories of several notable events (it was my birthday the day before) I had’t lost anything that important – apart from the actual event. In some ways I wish I could remember what had happened and I use to search the depths of my mind to see if they were lurking there in some dark corner. But on the other hand I know it was a pretty traumatic time and maybe it’s best left forgotten. However, many others lose much longer, months, and sometimes years and this can include important life events and can be quite distressing in it’s own right.
I went on to talk about how this event affects your whole life and that many people have to find a new “you”, and that journey to “Life 2” can take a while and it will have many twists and turns. It’s also worth noting that the event and subsequent fallout can have a big impact on families especially if they were involved with or were a witness to the save. I noted how I had seen quite a few saviours struggle with what obviously was some psychological impact of the whole situation and that these issues were largely being ignored.
Whilst having an ICD can bring some comfort in that you know you are protected from future events, it also brings it’s own baggage. Some people just don’t like having a foreign body inside them in addition to the practical aspects of having one. For a start your ability to drive is affected and this can impact work.
If you’re no longer able to work there is a good chance you will end up having to deal with government departments and other entities such as insurance companies. It can be a very stressful experience as it’s quite likely that you’ll not be in the best state to deal with these sometimes confusing and complex claim processes. It’s obvious a lot are not designed to cater for someone who has been through an SCA, often there is a box for heart attack, but not cardiac arrest!
All of these changes in your life can lead to great strains on relationships and families and sometimes it will make them stronger, but it can rip them apart if understanding and adequate support is not given. It also seems to be a lottery as to whether survivors are given genetic testing. Of course not all need it, but for those that are idiopathic I would of thought it should be fairly high up on the list of things to check, especially when they have children or siblings to also worry about.
Of course there is a tendency to ask many questions about how you were saved, and when you look at the statistics you sometimes have to say why me and why not one of the others who did not make it. Ironically some people feel guilty about being saved, whilst for others it can really test the meaning of their life and whether they have a reason or purpose to exist. All in all it can really mess with your head and your life, big time!
From having spoken to quite a few other survivors and having run the Facebook support group for a while, I thought my post SCA experience was fairly typical, and I wanted to show that. So I asked some questions in the group and although I can’t make claims to any rigorous scientific methodology, they had a decent enough response that I thought the results were valid enough to use.
The first results I showed were to 2 questions as to whether people had felt their needs had been met in hospital and post discharge. Unsurprisingly most responded positively for in hospital – after all they’re alive! But in stark contrast nearly two thirds thought their needs were not met once they had left the hospital.
When I was discharged I got no rehab offered and I thought that was probably the case for most others. I could of done with some, although maybe not in the same sense as someone who had had a heart attack or major surgery. So, I asked whether the groups members got any rehab or psychological help. With regards to the rehab responses, I noticed a trend that those who had a heart attack as a causal factor to their SCA tended to get rehab, where those who did not, didn’t. So I split the results out to show as such. It was also fairly noticeable that only 1 in 5 got any psychological help.
I summed up by saying that the Facebook group had been a real benefit to me, and to others and that someone had said that the peer support offered was “pure gold!”. Knowledge and empathy go a long way and having other people to connect with certainly seemed to help with the feeling of abandonment and isolation. People who “get it”, whereas many of the people we meet on our journey of recovery don’t seem to.
I explained how I felt that we seemed to fall down between the cracks of existing care pathways and missed out on services that were there, but just didn’t get them because the dots were not joined up. I felt that those dots needed to be joined and that there should be a defined care pathway for sudden cardiac arrest survivors that included pro-active interventions such as counselling.
I finished by saying that I thought that they were all doing a fantastic job in being able to save a persons life, but many were struggling to live that life again.
After our first meet-up in February 2015, I realised I was not alone. It was the first time since my cardiac arrest the previous year that I had spoken face-to-face with someone who had experienced what I had. This was also true for my wife, who also happened to be my lifesaver. From that meet-up, the idea of SCA UK was born. Since then, we have achieved a considerable amount, primarily providing information, resources and support to others in a similar situation but also raising the profile of survivorship and the need for better post-discharge care. We are starting to get traction in this, and with the formation of the charity, I genuinely believe we have a bright future ahead and will make a significant difference in the lives of many who join our ranks.