After my idiopathic, out-of-hospital SCA in July 2021, I’ve often wondered what could happen now in terms of my health.
At first I had a blissful ignorance about what had happened to me. This was in part due to having had a hypoxic brain injury, which caused me to have memory loss. I also felt that hearing about my arrest from people who were present at it was rather like reading about the plot of a film. I’d got the main points but had not seen it myself.
As I came to properly understand the seriousness of what had happened, I, understandably, became a lot more concerned.
Questions filled my mind:
…Would I have to go into hospital again?
Was there something that I’d missed before my SCA that would be an indicator that it may reoccur?
As a single parent, how could I best provide a positive, stable life for my children even though I was an SCA survivor?
…and the biggest questions of all,
How do I live now?
And…
What if it happens again?
The Importance of Having an Emergency Action Plan
These questions felt less pressing after three years of nothing to report and several other significant life events that stole my focus. One question, however, remained at the front of my mind—if I start feeling ‘funny’ in some way that could possibly be heart or SCA-related, what should I do?
I didn’t want to run to A&E with every imagined concern, and I didn’t want to apply the mindset of ´don’t worry about it’ to something that turned out to be medically significant or urgent. I also didn’t want to scare or put a strain on my loved ones, especially my youngest child, who is now 17. She was 14 at the time of my arrest.
I’m very aware of the impact that my SCA has had on my family, and I wanted to protect them, as much as possible, from further distress.
I don’t have an ICD fitted, so I wanted to ensure I acted responsibly and mindfully. As “I’m fine” were almost my last words just moments before my SCA, I felt I needed to be more cautious just in case!
Having spoken with a paramedic friend of mine, I made the following plan:
-Call 111 if I feel at all concerned
-Call 999 if it feels like it could be an emergency
He reassured me that, given my history of SCA, reporting concerns would be taken seriously and that I was not bothering the emergency services or the NHS.
If possible, I will use the Patient Assist tool (the grey clicker thing!) to activate my loop recorder’s recording function and my Kardia monitor to record an ECG. I will also wear a Fitbit—mine’s the most basic model—to keep a gentle eye on my heart rate.
-Know what things to take into the hospital if I needed to go—my phone charger, glasses, wash bag and toiletries, book for entertainment, snacks, drink, and warm socks were on my list.
-Have a list of people to contact in this type of situation. My emergency contact list included close friends and family who had already agreed to be available. I shared their numbers with my kids, printed out a list of their contact details and stuck it on the back of a cupboard door, just in case.
I thought that having a plan like this was just something that I was doing in order to calm any residual anxiety that I may have about my SCA. A sort of belt and braces approach to the situation that I wouldn’t really ever need.
However, on Tuesday this week, I did need the plan, and I was so grateful that I had it worked out beforehand.
Leveraging Technology for Post-SCA Monitoring
I woke up with a strange feeling of bubbling in my chest and a pain in my left arm as if I’d laid on it. I’d never experienced something like this before, and it wasn’t stopping. When I checked the time on my phone, it was 2:30 am. I saw that my Fitbit had sent me an arrhythmia notification, indicating that I had had arrhythmia for the previous couple of hours whilst sleeping. I got up, activated my loop recorder monitor, and took a quick ECG reading with my Kardia monitor, which also said I was in arrhythmia. I looked at 111 online, and it flashed up phone an ambulance, so I did. While waiting, I sent messages to my emergency contact people so they could be on standby if needed! (They later told me that they were all really grateful that I’d started my message: ´I’m actually really ok, so please do not worry, but I want to let you know that I’m being taken to A&E as a precaution’)
The ambulance arrived in 10 minutes. The paramedics were great and very reassuring, saying that I’d absolutely done the right thing in calling an ambulance. They asked some questions, took my blood glucose level, and took an ECG, and even though, at this point, my ECG was back to normal, they advised me to go with them to the hospital. I consented, and we left for A&E.
Once we reached the hospital, I was immediately taken to the business end of A&E. Here, I had another ECG and my blood taken to check for markers of a heart attack and for screening of other factors that could have caused the arrhythmia.
As my ECG was still normal and my test results were coming back as normal, I was rightly considered not to be a medical emergency, but the A&E doctor who came to see me wanted to keep me in hospital until the heart monitoring team could look at my loop recorder records.
I showed the doctor both my Fitbit readings and the ECG recording from my Kardia monitor. She was pleased that I had both of these and said they were very helpful. She also said that the NHS uses Kardia monitors.
I asked her if I should actually have called an ambulance, and she said absolutely, given my SCA history and the fact that I was having unexplained arrhythmia. She said that for an SCA survivor, it is important to act on any concerns and not just leave them.
After a wait of a few hours, during which I was very appreciative of having a book to read, I was transferred to the hospital’s Same Day Emergency Care Unit as my loop recorder results had come back. Happily, my loop recorder had done its job, and by activating my Patient Assist clicker, I had managed to capture a recording of the arrhythmia. I’d had an episode of atrial fibrillation- where the top 2 chambers of the heart start to quiver. Though this is medically important, it’s not an immediate medical emergency.
The doctor in the SDEC unit talked through what had happened, reassured me, and said that he had requested a further ECG at my GP surgery in a week and referred me to the arrhythmia team. As the arrhythmia had righted itself and everything else was normal, I could go home without any medication or intervention. If it came back, I was told that I should come back to the hospital. Whether the atrial fibrillation was in any way a part of why I had an SCA or was at all a consequence of having an SCA, or whether it was utterly unrelated to the SCA, the doctor couldn’t say. He also noted that I may never have another episode of it. He gave me advice on how to lessen the chances of it returning.
Lessons from an Emergency Trip to A&E
Though I was initially very scared when I woke up in the night, this whole experience ended up feeling very empowering for myself, my kids and my emergency contact support people.
Having a plan of action proved invaluable. It gave me an idea of what to do even though I felt frightened.
Talking through that plan with my loved ones before anything happened meant that we were as prepared as possible when it did.
Using a cheap Fitbit and a Kardia monitor and remembering to use my Patient Assist loop recorder activator allowed the medical team to see the details of the arrhythmia, which had ended by the time I got to A&E.
Great story, great thinking.
Being idiopathic, I wonder why no ICD for you. Your choice?
I wouldn’t be at all happy without mine……but obviously they can occasionally bring problems of their own.
Hi there. No ICD for me as I was a PEA arrest (as an initial rhythm) and that type of arrest can’t be defibrillated. I’m still here because of a lot of CPR and, I imagine, a huge amount of luck! The consultants considered an ICD but felt that it wasn’t indicated in my case. They may of course revise that opinion in the future.
I’ve now been referred to the heart arrhythmia clinic at the hospital for the AF and I’m going to have a 2 day ECG Holter monitor this week to see if anything else shows up
I’m so glad you were OK. We’ve called 111/999 a few times since my hubby’s oohsca and each time the attending paramedics have absolutely brilliant. Hubby was triaged at home twice and taken to hospital twice. We were never made to feel as though we were wasting anyone’s time. I really can’t fault EMAS, the dispatchers or our local cardiac unit.
As a person living by themselves I found your account very helpful to guide me setting up an emergency file for any eventuality. Incidentally my husband had a sudden cardiac arrest but did not survive.
Hi, Ruth.
What an extraordinary and mature set of actions that you took. I doubt there are many of us Cardio peeps who are that organised. You are an excellent example of covering the unknowns when an ICD is not deemed necessary. I do have an observation/opinion to offer that illustrates a different attitude due to current tech as against what was available when I went down in 1994. My idiopathic (non symptom led) SCA happened long before any of the superb monitoring tech had even been invented. Consequently, I was kept in the major cardiac treatment ward for a month awaiting my ICD implantation. The cardiologist at the hospital/resus unit told us I wasn’t going anywhere without an ICD. He was proven absolutely correct when I arrested at home within two months and again four years later. No ICD, no Mark. It was a simpler more cautious time thirty years ago. Wishing you all the best; again WELL DONE for being so aware and prepared.