The podcast is hosted by me, Paul Swindell and is conversations with people whose lives have been affected by a cardiac arrest, whether that be as a patient, partner, life-saver or health professional. The podcast aims to give insight, information and hope to any others going through this life-changing event.
It’s something I’ve talked about doing for about 18 months now and I’ve finally got around to getting everything together and giving it a go. It’s my first attempt at anything like this so please be easy on me! (and my guests!)
A big thank you to all those who said yes to appearing on it and to Matt Nielson for his tireless editing.
If you like it, please do leave a positive review and follow it. Hopefully, the more who hear it the more it will help and also further our cause. We’d also appreciate you spreading the word by sharing it on your social media channels.
Where to listen
You can listen to the podcast through Spotify, Tune In and the player below.
Soon, it will also be available via iTunes, Google Podcasts, tuneIniHeartRadio and your favourite podcast player.
18th September 2016 was a pretty normal day. It was Sunday, we had the grandson over, I cooked a roast. In the evening I complained about a bit of a weird feeling in my chest, kind of indigestion but not. I shrugged it off, went to bed and thought if it continued I’d call the Doc after work the next day. I woke up around 1.00 am with a sense of foreboding, still a bit of a funny feeling in my chest, it had moved a bit, into my throat, nothing painful. I was actually having a heart attack which at approximately 1.30 am on 19th Sept lead to five Cardiac Arrests.
I still have no idea what prompted me, but I got out of bed and somehow found the phone in my hand calling 111 for advice, whilst arguing with myself that I had important stuff to deal with at work the next day! I was making a fuss over nothing. I had no classic heart attack symptoms, wasn’t in any pain, but just felt something wasn’t right. That sixth sense, a feeling of impending doom maybe. Despite apologising that I was wasting peoples time, and saying I was sure I was worrying over nothing there was no hesitation on their part in sending a paramedic.
About 20 minutes later, after following their advice to open the front door and turn on lights, I’d got my somewhat bemused partner out of bed and got myself dressed. Whilst being examined – ECG, BP, all the usual questions – I felt no urgency or panic and was even joking about the whole situation, apologising for wasting his time. Anthony, my lifesaving paramedic, said ‘Doesn’t look like it’s your heart, but we’ll get you to Basildon Hospital just in case.’ I was still arguing that I’d go to the doctor in the morning and felt stupid for making a fuss. Suddenly I remember saying “That really hurts now’” and felt what I can only describe as the most enormous bear hug – I went into cardiac arrest. My ‘memory’ of it is of peaceful, black, calm nothing although this isn’t a true memory, more my brain’s way of trying to make sense of that time.
That amazing paramedic with support from my neighbour, an anaesthetist who just happened to be not on a night shift but up reading when my partner went running for her, saved my life by doing CPR & delivering shocks from an AED. I’ve since found out from Anthony that I actually had two arrests at home before coming round on the floor surrounded by people – a sea of green with concerned faces. As they lifted me out to the ambulance I remember telling my partner to make sure my daughter and grandson knew how much I loved them.
The ambulance crew then saved me a third time when another CA happened on the way to Basildon Hospital. I have a particular memory of a very reassuring lady, Teresa, on board and just remember that crushing feeling, and saying ‘It’s happening again’ before the blackness took over. I arrested twice more that night in hospital but remember the first and third times only. There’s a vague memory of coming to in the cath lab, of seeing my heart on a screen as they were inserting a stent, and having a conversation with a nurse about my nail varnish!
My poor partner is the unlucky one who witnessed the whole thing. Apparently after that first stent was fitted, I had a further arrest, was resuscitated, and was taken back for another stent to reopen the first. Talk about a ‘chain of survival’ – right place, right time, and all because of a phone call that I still don’t know why I made.
The Immediate Aftermath
I was in hospital for two weeks and had three stents in total. I’m told I came round two days later thinking it was still Monday morning and demanding someone call work to say I’d be late. Those first days are a bit of a blur but I do remember them. The fantastic doctors and nurses, visitors coming and going, beeping machines, oxygen masks, being referred to by hospital staff as ‘the little miracle’, other patients leaving CCU and wishing me luck, telling me how pleased they were to see me doing so well, and an elderly gentleman who told me he’d been praying for me although I hadn’t even spoken to him. But mostly an absolute under appreciation of what had happened to me! I wanted home, I was fine, I wanted ‘normality’! Little did I know….
I wasn’t fine.
Normal wasn’t normal.
Dying is the easy bit – surviving is infinitely harder.
For the first few weeks I was in an almost euphoric haze of ‘Wow, I survived death’. Then overnight, reality and, with it, an emotional upheaval like I’ve never known. I never understood the meaning of the word ‘sadness’ until that moment. Bam, the tears started and felt like they’d never stop. Would I ever feel like ‘me’ again, when would life return to ‘normal’?
I’ve been left with a number of physical medical problems: emotionally & psychologically the fallout from surviving death is hard to cope with, and fear, anxiety, depression & PTSD is, I now know, common in cardiac arrest survivors.
And now … ?
Life changes! My memory is shot! I never did make my meeting or even make it back to work. I don’t have the independence I’d worked so hard for. You lose some of yourself somehow. I felt like I’d come back, but had left something behind. My personality has changed; I suffer fools less gladly, I’m calmer in some ways, but so much angrier in others. I don’t want to ‘sweat the small stuff’ and I want to really live.
I realised that we all imagine that dying is the end, your belief system is completely shattered when you survive dying! I was so blessed to, one night while sitting in tears, stumble across an amazing Facebook group, Sudden Cardiac Arrest UK. I posted how I was feeling and the response was incredible. People out there understood, I wasn’t alone, and I wasn’t going completely insane! This group has helped make some sense of my new ‘normal’.
Despite all that, I know statistics show that only 8% of people suffering a cardiac arrest at home survive! Thanks to EEAST and Essex Cardiothoracic Centre, I consider myself immensely lucky and couldn’t be more grateful to those that saved me that night.
I am now 48 years old, and thanks to these amazing people I am still here to see my 5 yr old grandson, and newly born granddaughter grow up. I’m here to continue living & loving my family and my life.
On the 9th June 2018, I was privileged to become a Guinness World Record Holder along with 126 others from across the UK, for the largest gathering of cardiac arrest survivors in one place, at Basildon Hospital. This was a true celebration of life. And I’m currently the Chair of a local group in my village, working to provide public defibrillators in our community.
I’ve been involved in instigating a Hospital Heroes award for my Cardiologist, who supports SCA UK. He won! On my 2nd anniversary, 19th September 2018, I finally got to put names and faces to my lifesavers! One of the most emotional experiences of my life! How do you thank people for the gift of your life?
I truly cannot say ‘Thank You’ enough, or find ways to express my gratitude to all those who made living possible! It was an overwhelming day, for the four paramedics and ambulance crew, as well as for my family and me. I got some questions answered too, which helped with some of my ‘lost’ moments. They got to see the results of their work, and seemed very happy at the outcome. There’s no describing the emotions running through me when I finally met them.
Yes life is different, but time, my family and friends, SCA UK (& the ongoing support of a very good psychologist!) continue to help me make some sense of it all. It’s been a good excuse never to cook a Sunday Roast since….
The cardiac arrests may have tried to take my life, but I’m a survivor.
I’m taking ‘ME’ back!
I’m not a poet, but I wrote this a while back about my experiences:
Funny feeling in my chest Time to lay down, time to rest Awake, foreboding, don’t feel right Don’t yet know I will die tonight
Paramedic checks my heart Massive bear hug, just the start Peaceful, black, time stops still My body gives in, it has no will
Ceiling, faces, shining bright Hurts my eyes, this isn’t right Ambulance, sirens, wailing, shrill My life will end four more times still
Watch my heart upon a screen Chance of surviving is pretty lean See the arteries, talk of clots Alarms go off, my heart just stops
Hospital, doctors, they didn’t shirk I think I might be late for work Worried faces, a loving look Five cardiac arrests, my life they took
Life goes on, but not the same Something missing, no one to blame Sadness, panic, emotions raw No one knows the things I saw
Pain, confusion, numerous meds Days I can’t get out of bed The aftermath of death is hard The odds all changed on the turn of a card
I died that night but yet I’m here What’s the reason? It’s not clear My grandson’s smile, a hug, a kiss The things I’m grateful not to miss
Life’s upside down, it’s round & round Sense no longer can be found Normality, for that I strive I died that night – but I’m alive.
Bright spring mornings are an ideal opportunity to ride away on a bike and get some exercise, and on that particular day it was mild and warm. My regular Thursday route is a ride that goes uphill for a couple of miles but the effort is usually worth it, and it means it’s downhill all the way home again. The last 200 yards to the community centre is the steepest part of the ride and a rough and ready assessment of my fitness is whether I can stay in a higher gear going up that last hill than I had the previous week. At my destination I parked my clunky commuting bike next to the sleek aluminium racer that was always there by the time I arrived. I’ve got a fancy lightweight road bike of my own for special occasions, but the ride on a Thursday is more of a bread-and-butter training ride so the heavier bike and uphill route is intended to improve my performance. On that particular day I was feeling pretty good as I walked into the building, perhaps a bit lightheaded, but then – wham! – cardiac arrest.
Actually, none of that is true.
It might be. It’s what would have happened on a typical Thursday morning (apart from the last five words), but that particular day – 26 April 2018 – is lost to me. I can’t remember the day before either, even though I went to the theatre. I remember the Tuesday night – having a drink with a couple of friends in a pub in central London – but otherwise everything concerning that time is a complete blank until I woke up in hospital a week later.
I realise now that my good fortune extends beyond actually waking up. Having lost only 36 hours of sentient memory is in itself a bonus in comparison to what others have experienced, and there are so many ways in which things could have gone wrong that I’d been unaware of how precarious our lives are. If this? If that? The possibilities seem almost infinite.
The first bit of luck was that it didn’t happen while I was still on my bike – I could have gone under a truck or a car or something. A further bit was being in a place where people knew me, and in addition were concerned enough to intervene. But probably the key factor was having a ‘saviour’ with the knowledge and confidence to start CPR promptly. A bonus bit of luck was getting a speedy transfer to a specialist hospital: although the two local air ambulances were on other missions they arranged for me to be picked up by a neighbouring air ambulance that was free at that particular moment. I reckon that makes 5 lucky chances before I even got to hospital, more than half a cat’s-worth.
I don’t know how long I was ‘out’ – the people at the community centre were too freaked out by my sudden collapse to start clock watching. They realised afterwards that I was on the floor underneath a defibrillator box, but the road ambulance had arrived before anyone noticed it. (There’s a lesson to be learned there, I think.)
Those people saved my life and I wouldn’t say anything against any of them but in the ‘micro-stories’ I’ve been told by different people afterwards it seems that when I first collapsed I was put into the ‘recovery position’ to ensure I didn’t choke – as our old half-remembered first aid courses would have demanded. It was only when the ‘news’ of my collapse spread though the community centre that someone with ‘proper’ first aid at work training made their way over to check me out and discovered I wasn’t breathing, that CPR started and the emergency services were called.
I later discovered from the emergency services that the 999 call was received at 09.38 and an ambulance arrived at 09.44, so with the slight delay before the call was made I guess I was out for about 10 or 12 minutes before an oxygen cylinder arrived to complement the CPR. The helicopter arrived at 10.11, my condition was stable enough for take-off by 10.36, and I was at Harefield by 10.55. I’d been to Harefield many times before, but arriving by air was a first, so it’s a pity I wasn’t in any state to enjoy the journey
In this hectic scenario, the CPR definitely had a significant effect because my brain functioning doesn’t seem to have been impaired too severely by this incident. Or, at least it’s only been impaired it to the extent that I’m no longer aware of how well my mind might have functioned beforehand. I was in an induced and chilled coma for several days which was to aid the brain’s recovery, or maybe my 25 year-old hospital number worked like a loyalty card and secured preferential treatment. Either way I was only in hospital for a couple of weeks and left with an extra stent and an ICD.
I returned to the community centre a few weeks after it had happened to the surprise of everyone I met and, among people I’d previously only known by sight, I now have new friends. The reason for the visit was to return to my Slimming World group so; on this occasion they really had saved my life, and I’d lost an extra 11 pounds while in hospital too. Win-win! I’ve been back nearly every Thursday morning since and occasionally overhear some people talking in hushed tones about “that poor man who died” at which point I interrupt (to their embarrassment) and put them right. Just to clarify – no, I wasn’t on a bike until several weeks after that, the heavy old steel bike is being rested in favour of a lighter mountain bike, that hill is now treated as a hazard rather than a challenge, and I’m coming round to the idea of an electric bike too.
You probably think that I’ve also been lucky to be able to have come to terms with these events so easily and lightly, but I can assure you that it’s more complicated than that. What you’re reading is partly an indication of the tendency to minimise or trivialise significant issues that many men have. (If you didn’t laugh, you’d have to cry.) However, a big part of my apparent insouciance is the result of a previous serious health scare from over 25 years ago when I started getting angina twinges while exercising hard (yep, on a bike again). After a series of extensive tests and investigations, I had a bypass. I was only in my mid-40s at the time, with a young family, the usual commitments, and good career prospects, so it was quite scary and set me back a bit. However, I was lucky to be treated at Harefield which was one of the pioneering centres for coronary care (and transplants) at that time, and with regular outpatient care I’ve come to know the place like an old friend.
In retrospect my bypass alerted me to the fragility of health and when, five years ago, I started to experience some symptoms of atrial fibrillation (AF) I had complete faith in Harefield’s ability to fix that too. It took a bit of time and a couple of different treatments but it seemed to have been remedied, and I was still having outpatient appointments when the cardiac arrest happened. There’s speculation that it might have been a recurrence of the AF which triggered the VF (ventricular fibrillation) but there’s no evidence and no-one really knows for certain why it happened when it did, and there are more tests in the pipeline to investigate my condition further. I can’t remember what I might or might not have been feeling before the event. When I checked my bike it wasn’t in a particularly low gear so maybe I’d flown up that last hill, or maybe the effort and strain of crawling up it in too high a gear was what brought it on. People who saw me before I keeled over said I looked fine and in no obvious distress before I suddenly collapsed. If it should happen again then at least I have an ICD to record what’s going on.
I’d been through all the metaphysical doubting, worrying, and questioning stuff 25 years previously when I agreed to Harefield cutting open my chest, stopping my heart, doing some plumbing, re-starting my heart, and sewing me up again as they did my bypass. This time there was no conscious consent on my part to any of the procedures and no heroic surgery, but I’m not complaining. I suppose I’ve become a bit blasé about the idea of a heart stopping, and then being started again. It’s happened to me twice now, so I assume it can happen again. I’ve come to understand the physiology or mechanics of the heart and what’s happening inside my chest, and this doesn’t cause me any undue anxiety. At this moment, knowing what I’ve been through leads me to celebrate the fact that I’ve survived, rather than being overwhelmed by the shock that something extreme had happened in the first place.
I realised the significance of this just before Christmas when I arranged to meet up again with a chap I’d met in cardio-rehab at Harefield. He was in his early 40s with a young family (as I’d been when I had my bypass) and had had a heart attack at about the same time as my cardiac arrest. In my message to him I suggested a drink to ‘celebrate our survival’ and he admitted when we met that he hadn’t been looking at in that way – he’d been so traumatised by the unexpected and brutal nature of his collapse that, until then, he hadn’t realised there were any positives – that he was still alive, he was recovering, and taking his four-year old daughter into a Christmas he didn’t think he was going to see. I think I changed his perspective and provided a more optimistic outlook for the future, and I hope we’ll meet up again to compare recovery notes.
Sure, I do have darker moments. On a regular basis I’m aware of what’s happening inside my head, and it isn’t the same as it used to be. Maybe it would be the same if I hadn’t experienced my SCA because we all think we start to lose our marbles as we get older, forgetting things, not remembering things, not noticing things. But I’ve had an SCA, and I’m aware of a black hole where there are no memories; I’m aware of things that I know have been told but have forgotten, and things which I will swear blind I’ve never been told despite the assertions of others; at times I’m pleased to have remembered to do the thing that needed to be done, but then discover that I’ve already done it and forgotten that I’d done so.
And I definitely can’t multi-task now, and not just because men generally can’t multi-task; I mean multi-task to the extent of doing something and watching the clock to make sure I can complete it on time, or remembering off the top of my head what I need to do once I’ve done it. I remember standing in a shop trying to chose between two shirts when my wife suddenly showed me two others she’d found in another aisle to consider too; I had to leave the shop because of information overload. And if there’s no overload, there’s ‘underload’ – those occasions when I lose track of time and suddenly find myself engrossed in the ‘wrong’ thing, or discovering that somehow it’s taken me nearly ten minutes to lace up a pair of shoes and put on a coat.
Reading is a problem. I used to read a lot but now it’s hard to pick up a book. I forget what’s happened and have to go back to re-read sections (a headache when it’s on a Kindle) – then discover whole sections that I don’t remember reading at all. Watching films or plays is OK – two hours concentration is just about manageable, but a TV series? I’m sure there are huge swathes of plot and sub-plot that pass me by, and I pre-record them so I can fast-forward through the adverts and not lose the drift of the story. Music is fine, in fact, I think I can recognise an old tune now faster than before, so I’m not sure what’s happening there. Typing is a lot slower than it used to be: apart for more frequent typos that need correcting, I find it hard to organise my thoughts into a coherent order. I get easily distracted and forget what the task in hand is supposed to be. You wouldn’t believe how long it’s taken to compose this. All in all, not very satisfactory for someone who’s supposed to be a writer. My writing friends don’t really understand why my book is no nearer completion than it was 12 months ago.
Motivation is a problem. And inspiration. And concentration. I have to force myself to do things and then don’t really enjoy it because I’ve had to force myself. Energy is another problem – not just fatigue but listlessness too. Some days are fine, and I can stride along the pavement, other days my legs are heavy and every step is an effort. And there’s no evidence that the sluggish days come after the energetic days through tiredness because often the energetic days immediately follow the really sluggish ones.
Some days I can feel evangelical and want to go out and change the world. Other days, what’s the point. But doesn’t everyone feel like that? How do I know this isn’t just normal for everyone. And increasingly the real question lies in What Now?
I’m part of a privileged group that has had a second chance, but a second chance for what? To do more of the same, carrying on as before, or to do something new? I’ve got my first re-birthday coming up and I’m not sure what I might or should do about it. Indeed, is there a ‘should’ at all?
I know my saviour, but I don’t know how to manage that relationship. Is our shared history an embarrassment best not spoken of and to be forgotten? Or is it something to be championed in the hope that others are encouraged to step up to the plate should the need arise on another occasion? Do I owe her anything? Do I owe myself anything?
I’m not aware that there’s an alternative to where we are now. For me, there was no brilliant light, no glimmering to be seen at the end of a dark tunnel, no choir invisible, no warm cosy glow, no hellfire and eternal damnation. There wasn’t even nothing. I wasn’t anywhere until I opened my eyes, and I can’t even remember exactly when that happened and I started to remember again – when that re-birth occurred. Was it when I responded to the de-fib shock, or when I woke up in ITU several days later?
I know there are others who can’t share my experiences or my outlook. I can’t imagine what my family must have experienced or how they perceive me today. Like me, they have no frame of reference and don’t know anyone else who has experienced something similar. Collectively we must have many different sorts of post-trauma experiences and we’re all having to work out our feelings about them. And the easiest way for many of us work out our confused feelings is not to talk about them at all to avoid the risk of upsetting the person we’re talking to.
I don’t look any different. I’m not in a wheelchair, don’t have a speech impediment, haven’t lost all my hair or turned green. There’s no reason for me to mention what’s happened to people who don’t know, so some of my friends are aware and others aren’t. And of those who know, I’m not sure what they’re aware of because (as we know) not many people can appreciate the difference between heart attacks and SCAs, even among health care professionals.
The Facebook Group that Paul established has become an important forum by which I discover what other survivors and their families are experiencing. Sometimes I’m on the brink of tears in frustration with reading how poorly others have been served by the health professionals responsible for their recovery. Sometimes it’s a source of inspiration and affirmation. But it’s only a virtual community and there are times in the day, in the week, when you do feel a bit on your own, and you are. Maybe we need a discreet lapel badge by which we might recognise each other and signify our presence on the streets.
I’ve written before about my SCA event on my blog at southofwatford.org and had some positive feedback from that. Since then I’ve reflected more upon those events and their consequences, which is why I wanted to write this additional account in more detail. I’d welcome any comments, thoughts or answers if you find anything useful in this. Maybe you could message me through the Facebook page, or make contact through the South of Watford website or Paul could pass on your comments to me.
Thanks for reading
SCA Survivor & Very Much Still Here (most of the time)