Sarah’s Story - taking the long view… 7 June 2014 to March 2018

Summary:

I was a fit, healthy, 46 year old Mum of one. No risk factors. I had a heart attack – out of the blue, no advance warning signs. Possible underlying causes included: being peri-menopausal, experiencing great anger / stress over the breakdown of a working relationship two days previously. I subsequently received a diagnosis of SCAD and FMD (Fibromuscular Dysplasia).

My SCAD story:

I had just started driving my 6 year old son to a party on Saturday 7 June 2014 when I felt considerable pressure in the middle of my chest. “How very strange” I thought. I stopped driving, got out and stretched to see if it changed. It got worse. Somehow I knew straight away that something was wrong, very wrong. I thought about calling my husband or 999 but realised I wanted to get us both back home. Quickly. I thought I could. I did. A minute later my husband was distracting our son (“but why can’t I go to George’s birthday party? It’s not fair!”) with his Nintendo DS in another room (!) while calling 999. Our first piece of good luck on this scary day happened next: our wonderful neighbour (a doctor) was just on her way out to her Birthday lunch. She came to look after me as we waited for the ambulance.

As well as the pressure deep in my chest I felt tightness all around it. I needed to loosen my clothes – can remember undoing my bra. My arms (particularly the left) ached. I got pins and needles in my left hand. After sitting and leaning forward for a while, I felt a wave of cold clamminess descend and I broke out in a cold sweat. Then I needed to lie down. The cold tiled hall floor felt good against my cheek. I felt nauseous and wanted to faint (which would have been a first for me) but decided I didn’t want to lose consciousness (I was scared that I would die), so fought hard to stay ‘present’. I didn’t pass out.

By time the paramedic, swiftly followed by an ambulance, arrived and I was being assessed I was starting to feel like I was ‘returning’. I was taken to my local A&E – not the nearest heart centre – just ‘as a precaution’. “You’ll be home again in a couple of hours.” Nobody mentioned the words heart attack. At the hospital I was hooked up in a bay in A&E and left there. No one seemed worried about me and I was starting to feel a bit of a fraud – I felt that way for the entire six days I was in hospital.

A troponin blood test told the registrar I’d had a heart ‘event’ – probably a heart attack. Not sure who was more shocked – him, me or my husband…. The patterns of subsequent ECGs backed this up. More good luck for me: the on-call consultant in A&E that Saturday afternoon was a cardiologist. He asked me when I had last taken cocaine (um…. Never…!) – apparently it can cause spasms that cause heart attacks… He quickly realised I had no risk factors whatsoever but still put me on all the heart attack meds – aspirin, clopidogrel, bisoprolol, atorvastatin – ‘as a precaution’ – there was no protocol for people like me. I was a mystery. ‘Query myocarditis, query MI (myocardial infarction or heart attack)’ as my notes said. As I got used to calling and texting people saying “Please don’t worry, I’m ok, it’s just that it looks like I might have had a heart attack…” the consultant was busy trying to book me an echosound, MRI scan and angiogram…

Because I seemed to be well, more urgent cases kept bumping me down the queue for the angiogram – this pleased me no end (though sharing a ward with old ladies dying of advanced heart failure was very frightening). Five days later, after a vaguely reassuring echosound and MRI, my angiogram at the London Heart Hospital gave me my diagnosis. A SCAD that appeared to be sorting itself out. Turned out that (more good luck for me) waiting five days for my angiogram was probably the best thing that could have happened – preventing the catheterisation from tearing my dissection further. No stent was required.

The sheer relief of returning home six days after I’d left, sitting in my garden and excitedly waiting for my husband to bring our son home from school was huge. My gratitude at being alive was overwhelming.

The next day I decided to do some cutting back in our garden – against my husband’s better judgement. He was right. I learnt about my new physical limitations the hard way.

That night we dialled 999 again – and got my lovely neighbour round again. I learnt the difference between panic attack and heart attack that night. I went to A&E as a precaution again and was sent home at 5am (it was the night England exit-ed the World Cup. A&E was not a happy place to be in) – but I was just pleased to be back in time for when my son woke up at 6am.

While I spent my week in hospital getting tested, and finally receiving a SCAD diagnosis, I was told I’d never meet anyone else like me – how wrong that doctor was! Within weeks I found information about the Mayo Clinic and a SCAD Survivors Facebook page with 600 members (there are now over 2,400). In 2015 a UK and Ireland SCAD Survivors page was set up and that now has 350 members.

My initial physical recovery took several months – absolute exhaustion, chest pain, arm pain. Unable to lift anything. Had to sleep every afternoon. Adjustment to medication regime took time – there were many side effects.

Mental recovery took much, much longer. I had my first panic attack within 24 hours of returning from hospital and suffered with anxiety – at times, greatly. At one point I felt like I was on the edge of some kind of mental breakdown. Thankfully, it didn’t come to that.

Physical and/or mental issues meant repeated trips to hospital in June, September and November 2014. Ambulances were called a few times for out-of-control panic attacks. Cardiac rehab provided a boost to all-round well-being and offered an introduction to CBT counselling to help manage the anxiety. It helped. A lot. As did taking up regular moderate exercise, including a follow from cardiac rehab – a council run cardiac circuit training class. A friendly GP recommended Iyengar yoga. Upon meeting a very wise yoga teacher who ‘got’ the whole picture straight away, I was told that I needed to ‘regain my sense of perspective’ – these turned out to be very wise words indeed. Yoga, mindfulness and CBT all helped me start to live in the ‘here and now’ rather that worry about the past or the future. (It must however be said that while living in the ‘here and now’ makes great sense, it is much easier said than done!)

General talking therapy helped me to make sense of everything. But it took time. As the months passed the rollercoaster ride that is ‘life post SCAD’ started to slow down… the bumps in the road came along less frequently and the time it took to recover from these bumps decreased. There were still setbacks but the journey continued in the right direction.

My supportive cardiologist – although not knowledgeable about SCAD – showed great interest in my case and provided practical and moral support. Access to the Leicester Research programme provided a fuller diagnosis and a ‘game plan’ for how to manage the condition going forward. Most importantly, it reignited hope! One suggestion – having a mirena coil – once carried out, appeared to help iron out extreme hormonal fluctuations that had probably been at the root of most of my physical and mental health issues since the SCAD.

On my 2nd SCADiversary, I felt happy, grateful and full of hope. I was finally daring to think about the future again and realised that there was much good work to be done still in my life and much fun still to be had. So I appeared to have arrived at my ‘new normal’… It had only taken 2 years!

I have stopped blaming my body for letting me down that day and instead I now thank it for keeping me alive on 7 June 2014… I’ve regained my sense of perspective…

I now volunteer for Beat SCAD, helping to organise their conferences in November 2016 and the next one coming up in June 2018. I am an admin on the ‘UK and Ireland SCAD Survivors’ page trying to pass on the support I received in my early days to those who follow on behind me. I regularly give talks about SCAD to help raise awareness, particularly regarding pregnancy-related SCAD.

My top suggestion – keep a journal (of any kind). Jot down symptoms, thoughts and feelings whenever the feeling takes you. I had a document on my PC that I kept adding to, but a notebook can be just as good. Reading back, you may find useful patterns emerging that help you manage your condition better. And you will see the progress that you are making over the long term - it is often hard to see this progress on a day to day basis.