As I write this it’s World Book Day and if you have kids of a certain age you probably already know this as many of them get the opportunity to dump their school uniform and dress up as their favourite book character.
Coincidently the previous day I did a presentation on the self-publishing process I used to create the Sudden Cardiac Arrest UK book – “Life After Cardiac Arrest“. I volunteered to do the presentation to a Meetup Group I had joined approximately 9 months after my cardiac arrest. The group is for Freelancers/Work at Home/Startups and Creatives and I thought it a good idea to go to it to see how well I would cope with a work style environment.
The group held its meetings in a cafe and had the tables organised such that they formed a large square. Including me, there were just under 20 people and I pretty much immediately knew I was going to struggle. The noise from the chattering and tables and chairs being pushed and pulled made my head buzz, and unfortunately not in a good way.
However, I persisted and set myself the goal of lasting the whole meeting. It was 90 minutes and by the end of it, I needed to escape to the peace and quiet of the outside. It was unfortunate I had to get out as I had enjoyed the activity and the people seemed very friendly. Having spent a lot of time at home the previous months meant getting out and chatting with others was a bit of a novelty and something that I realised I had missed.
I got to my car and just sat in it for sometime in order to give my head the chance to calm down. The persistent headache acquired due to the SCA hypoxia had ratcheted up a couple of notches and I really needed to get back and lay down. After a long rest and with my headache returned to its normal suffocating level I reflected on the day and the impact it had had on me. Yes, I’d had to endure some unpleasantness but on the plus side I’d gotten through it and it had been a positive step in my recovery.
This pretty much formed the basis of my experience with going to the group for quite some time. “No pain, no gain” so the saying goes and it certainly wasn’t wrong in this case. I since learned that sensory overload is a common sequela for those who’ve experienced a brain injury.
I’ve been going to the group for just about 4 years now and done some really interesting and varied things, visited places I never would have pre-SCA and made friends with some really great people. I’ve also learned a lot about myself and other people and whether they know it or not they’ve been a real help in my recovery. Which is why I decided to try to pay back in some small way by doing my presentation.
So if you’ve been a bit housebound since your SCA, why not check out Meetup and venture out into the world in a similar way. It can be a little daunting at first but also a great way of learning what you are capable of and where you are in your recovery, plus you might get to do some fun things and meet fun people as I did!
Back to books
Part of the point about this post was to suggest some books for Word Book Day that might be of interest to those affected by a Sudden Cardiac Arrest. Of course, there is our own book…
Group member David Jeffrey has a wonderfully written book and it is a testament to the author’s skill and courage that he has been able to put down these obviously painful memories and the resulting introspection in a way that is highly readable, engaging and at times deeply moving. It’s not an SCA book per se but it deserves to be read, not just by those who have gone down the therapy path or are considering it, but also those who have experienced great loss from loved ones and are struggling with their feelings.
A few days later I was released from hospital and having had quite a scare (possibly more so for my family as I had no memory from that whole week), I set about trying to get back to normal, although not sure what that “new normal” might be.
Not wanting this to happen again I googled advice and found the BHF website very helpful, so no dog walking or vacuuming for 12 weeks, but also what I could do a walking started on day 1.
I found out that had I lived locally to Colchester Hospital (where I was treated) they would have arranged Cardiac Rehab, but as I was “out of area” I had to sort it out myself.
Living in Mid Suffolk I found that my local gym had classes, which I eventually attended (once the nurses accepted that I was entitled to the 8 week course). I found this very helpful and progressed really well. I enjoyed the circuit session and repeated them a couple of times a week at home to supplement.
I was so amazed at what had happened to me I started thinking about the various things to improve the stats, about fatality rates from “out of hospital Cardiac Arrests”. So a week after leaving hospital we arranged two CPR training sessions at my running club, and I was able to say a few words to the 50 or so people who turned up about how people with just a little knowledge can really save a life by just having a go!
On Tuesday evenings after coaching at my running club a small group of us have a quick beer at the local rugby club. I had already checked out to find we only had two 24/7 defibs in town and none near our playing fields (where Rugby, Football, Cricket, Running and plenty of walking takes place every day).
I spoke to the barman and said I would like to do some find raising to get one fitted on their external wall, he agreed to speak to the rugby committee and when I went back with some ideas a couple of weeks later to meet the secretary I was shown a brand-new defib fitted already. They apparently decided in view of what happened with me (& other incidents they had heard off) they would just allocate funds immediately.
I then found out we had a paramedic in our running club who ran some more CPR training both for our runners and later on in the rugby club. All of these sessions where done by off duty paramedics free of charge, wonderful people!
So I finished my rehab and was passed to what they called the Phase 4 rehab instructor in our local gym. I was given a special survivors rate at the gym which was most welcome and was looking forward to gradually improving my fitness and thinking about what I could do to raise some money (& what for).
What goes around…
I noticed that a fellow survivor (Jonathon Jenkyn ) living in neighbouring Ipswich was doing his 100th parkrunsince having an SCA in mid December 2017, so I contacted him and we meet on a very cold day in Ipswich and he kindly jogged (& walked) round much of the course and afterwards we chatted to BBC Radio Suffolk about our incidents and the importance of people learning CPR.
I then found out that after his SCA he had organised some CPR training for runners in the Ipswich area and two of them had worked on me!
By this time I had started to do some very gentle walk-jogging around my home. However, on Dec 18th I found an elderly man prostrate on the frozen path near my home. One bystander commented he was probably drunk, but I kneeled down and found he was breathing and he wasn’t happy bringing called a drunk. With another man, we tried to take him home but I was too weak so we waited for the ambulance which carried him to Hospital.
A couple of hours later I went out jogging (heavily wrapped up against the cold) and within a couple of hundred yards and with no warning I completely blacked out and crashed into a brick wall. A dog walker found me and initially I didn’t realise what had happened, then it dawned on me and obviously my ICD had done it’s job and I walked slowly home.
We weren’t really sure what had happened so called my GP. I explained on the phone and apart from a bloodied face, which would have been worse if I had not had a buff & woolly hat on I was feeling OK. The GP said she would send a note to the hospital.
A couple of weeks passed and by now I had started to experience upper arm and chest pains mainly when walking uphill, but also during the night, which would be relieved by a burp after a few minutes. This was actually quite scary but the GP (again making a diagnosis on the phone) suggested it was indigestion and perhaps I could take Rennies? I did try them but it didn’t seem to help.
Then after Christmas, I contacted the local hospital to see what had happened to my GP’s message. I was told it had been passed to Papworth and I should follow up with them. As I had my 6-month review coming up on Feb 16th I asked if they wanted to bring it forward and I was told no it could wait.
Later in January, I got a call from the home monitoring team at Papworth to do a download. They called me back to confirm that it had triggered on Dec 18 but nobody needed to see me at the moment as I was due to see my local cardiologist on Feb 16th. However, my chest pains and upper arm pains continued regularly (ie most days at least once).
On Feb 11th some friends of mine were going for some long distance running in the Surrey Hills and asked if I wanted to do a walk in the same area. As I was going to be with plenty of other people I agreed and on a cold February day we set off. Around the 15 mile mark (by a place known as the Devils Punchbowl) I felt a thump in my chest (not like being kicked in the stomach as had been suggested by a doctor to me) and I blacked out again.
This time I remembered what happened and was annoyed with myself for thinking perhaps I wouldn’t get through this time. Anyway when I came to a group had gathered around me, I explained what had happened and said I could walk now to the next checkpoint and retire. A nurse told me (in no uncertain terms) that I should stay where I was and she called 999.
It was very cold sitting on the rim of the punchbowl and the other walkers put all their spare clothes on me and put me on a bivvy bag. However, I just couldn’t stop shaking. They wanted to move me to a more sheltered spot but the control was telling them not to move me. However, they couldn’t locate our position and eventually with some not very nice words exchanged I was moved, then a 4X4 was spotted, stopped and I was loaded into the back. It seemed the ambulance was near the main road about 10 mins away. The driver was wonderful and although he didn’t know where to go eventually found the ambulance and I was rushed to the Royal Surrey.
In A&E I did try to get them to let me go home but they insisted on keeping me in. During the questioning, I was asked if I had had an angiogram and I said I didn’t recall having one and there was nothing on my discharge sheets from either Colchester or Basildon (where my ICD was fitted) about an angiogram. The following day the consultant told me he had called Basildon to confirm that I hadn’t had an angiogram which surprised him, so I was immediately fitted in and it showed 2 arteries narrowed, requiring a double bypass. A few days later I was transferred to St Georges, Tooting and had what appears to be a very neat operation.
Happy now that I was being told eventually I will be like a new man, I decided to raise money for my local Hospital who were building a new cardiac unit, which would mean not everyone would have to be sent from my area all the way to Papworth. On behalf of my running club, I have been organising a series of trail runs. We charge a nominal £2 for instructions and in 2018 I arranged 21 events in Mid Suffolk. The club where very happy to support West Suffolk Hospital cardiac unit and in addition the money was shared with CRY (who would earmark cardiac tests for young people in Mid Suffolk).
One evening nurses from the hospital came to our event and ran Afib tests. Unfortunately (or should I say, fortunately) they only found one person with Afib (I have it permanently). We managed to raise £3600 during the summer, the hospital reached its target of £500,000 and the new unit was opened in November and I was lucky to be invited.
Again I self-referred for cardiac rehab and as they remembered me I got on a bit quicker although the improvement was slower this time. During the months after the surgery, I had some issues with drugs. Initially, I was told to take codeine to relieve pain, I soon found myself constipated which obviously wasn’t very pleasant and I decided I preferred pain. Then I developed a dry cough which wouldn’t go away, and it wasn’t til one of the cardiac nurses asked me how long I had had it that she said it was probably the Ramipril. When I spoke to my GP he changed it and said 6 weeks and the cough will go, so, sure enough, it took 6 weeks.
Then the statins I was on gave me leg cramps every day. Now I am on a different statin I don’t have that problem. I developed a lung infection during the summer and the GP gave me an ECG, which he didn’t like the look of. He did compare it to one done after my original SCA but before my surgery and sent me to A&E. The regular doctors in A&E weren’t too happy either thinking I had had a Heart Attack. A blood test proved I hadn’t and they just said this was now my new normal.
A couple of things on reflection when there was an emergency…
The NHS (and bystanders) where all brilliant and certainly I wouldn’t be here without them
I don’t understand why so many do not do the rehab
Certainly, in my case (and I am sure in most cases) it was worse for the family as I didn’t experience any of the pain (apart from post surgery)
Last year we had a couple of posts by Lisa Snopek on some treatment she was having for post SCA PTSD. Some time has passed and I was interested to know how she had been getting on since her last session. You can read her original posts at EMDR experience and EMDR conclusion.
I am back to “normal” if anyone could actually ever describe me as normal.
I have been keeping busy.
I am 21 months down the line and things are very much plodding ahead like it [Lisas SCA] never even happened.
I am still working as a Hotel Receptionist, doing lots of hours. Though recently after the madness of Christmas and New Year, I had to take a week and a bit off. I found myself physically exhausted with muscle pain in my lower back and in my left shoulder and suffering from excessive amounts of indigestion.
Reporting to the Dr. that I had been suffering from pain in my left arm all day caused a hive of activity. A&E were phoned and warned I was coming in. The surgery nurses had to come in so the Dr. wasn’t all alone with me, just in case and the Defibrillator was brought straight into the room. The nurse switched it on, apparently, it was a “good idea to test the batteries.”
“There will come a time when we won’t be so worried” the GP
said to me and “did I know that he had a Heart Attack in 2017?”
“No, I hadn’t known that” and that’s why he explained to me
“he also tended to panic.” It struck me
that a GP also gets that, I am not certain, is it or is it not, do I get
it checked or not feeling.
Six hours spent in A&E put everyone’s minds at rest that
my heart was behaving itself, showing up nothing other than my Ectopic Beats which
for me are a normal abnormality.
I needed physio and will need a camera putting down to see what is going on to cause all this indigestion was the final outcome. I’m still waiting on the camera but I booked myself in for private Physio sessions as I was not willing to wait weeks and weeks for an appointment.
Acupuncture, Massage and strengthening exercises on my Yoga mat have been practised over and over again in my dining room.
Exercising, at an hour long class each week and running on the running machine was my normal routine to keep happy and healthy before I started needing to wear the muscle tape.
Meditating as many times a week that I can helps me to destress and zone out, as well as meeting up with friends and having a good laugh.
The PTSD is now a tiny part of my life. I cant say that I don’t think about the Sudden Cardiac Arrests I had every single day because I do, but I don’t feel upset at them happening or ever think why did it have to be me. In fact, some good things have happened to me since they occurred.
Such as discovering family I didn’t even know that I had,
all through trying to check if there was anything underlying with my genetic
The funniest one I can recall is when my son asked me “what was wrong with his eyes again, as he had forgotten.” There was me, telling him he had eye drops because he had chlamydia. What I had been trying to say was that he had conjunctivitis. I was close!
Writing the articles, helped me build new pathways in my
brain. We only have a window of time to build them as the holes that are made
by the lack of oxygen cannot heal over. I was noticing improvements from week
to week the more I used my head, and carried on doing so until a year and a
half later. I then realised that was it, what I had achieved had to last. The good thing was though at the start of my
journey, the online Thesaurus was always needed but now, I can pull the word
forward. I may have to think about it, but there’s no rush.
I haven’t got upset for a very long time now. It rarely
happens. The last time I did was when I went to see Miss Saigon last year. I
had finished having the EMDR sessions and was sat watching.
I knew the story and
I knew what was going to happen at the end.
When Kim did shoot herself and fell dramatically to the
floor, pretending to be dead, I instantly broke down in tears. Tears that would
not stop falling. The way that she fell, It was fast, it was dramatic, it
really could have been me!
I’m glad to say that has been the only instance since the
EMDR therapy that I have become upset.
I always look out for posts on the Sudden Cardiac Arrest UK Facebook group, and look out for anyone who puts a post up about PTSD, because I am more than willing to make contact with people and share my experience with them.
What I have learned from having the condition is that our
minds help to create our actual reality, so what we think about day to day is