After Rebecca had a SCAD a fortuitous meeting led to the start of the UK research


My SCAD story begins on 8th March 2012. It was a Thursday. When I woke up that morning I did not feel well. I seemed to wake up suddenly, but it wasn’t to my alarm going off. I tried to turn over so I could see what time it was, but I could barely move. What was stopping me? I managed to roll from my side onto my back and began to sit up, but I felt restricted, there seemed to be a pressure forcing me to stay laid down. It was like someone was pushing me down into the bed. I struggled to sit up. It was almost 6:30am.

I sat on the edge of the bed and felt exhausted. I hadn’t been in bed that long. It was around 2.30am when I got to bed but I didn’t fall asleep straight away. I had worked odd hours on Wednesday, just the morning from home and then from around midnight because I gave an online training presentation to colleagues in Australia between 1-2am. I figured I was tired and that’s why I felt unwell. I made my way to the bathroom. I started to feel sick and a bit clammy. I wasn’t sure if I felt hot or cold – intermittent waves of both. I splashed water on my face and thought I definitely need more sleep, so I went back to bed.

I couldn’t get comfortable. I felt like I was suffocating when lying on my back. I rolled part of the duvet up and propped myself up a bit, sort of leaning diagonally forwards across it. I must have fallen back to sleep and when I woke up a couple of hours later, I felt even worse. Again, I struggled to get up. I went to the bathroom and my left arm felt really weird. I held it out and looked at it because it didn’t feel like it was my arm.

For a moment, I thought about the hospital reports I receive at work for patients participating in clinical trials – I’d read thousands of reports of heart attacks and the symptoms listed matched what was happening to me.

But I’m 34 years old and I don’t have any of the risk factors the people in my clinical trials have.

I’m not overweight. I eat healthily and exercise regularly, most of the time! I don’t smoke and never have. No immediate family history of heart problems – my mum died young of cancer so that’s always been on my health radar, but not heart problems.

It seemed a ridiculous thought. I must be panicking. But actually, I felt oddly calm – so it definitely can’t be a heart attack, I thought. Surely, I’d collapse??! Whatever was happening, I felt dreadful and I was home alone and that didn’t feel like a good situation, so I called my sister as she lived close by. She answered and I started to say Hi, are you at home? but no sound came from my mouth. I tried again. Why couldn’t I speak? I thought, she’s going to hang up and think it’s a pocket dial by mistake, so I mustered everything I had and forced out a breathless and trembling I don’t feel well! Gina wasn’t at home but her partner Simon was, so Gina called him and asked him to check on me.

While I waited for Simon to arrive, I got dressed – well, sort of – then went downstairs, unlocked the front door and sat on the sofa. Minimal effort and I felt done in. Simon knocked on the door and came in, Becks? he called, then he glanced into the living room and said I’ll call an ambulance. I guess I didn’t look too great!

It won’t be your heart…

A first responder arrived really quickly. I couldn’t say much so I answered his questions with nods, head shakes, points and various gestures. He asked Simon ‘Is Rebecca usually this colour?’ and Simon replied, ‘She’s pale but not usually grey, no’. He did an ECG and gave me aspirin and GTN spray. I can’t remember much of what he said but an ambulance followed and two paramedics took over and said they would take me to hospital.

One of the paramedics asked me which hospital I wanted to go to. There were three options and all similar distance. I asked which was best for heart attacks. I felt convinced. They replied It won’t be your heart…. I’ve thought about this so many times since, asking myself Did they really think that or were they just trying to keep me calm and offer reassurance?

I received pain relief in the ambulance and by the time I arrived at hospital my symptoms felt more settled. It was about 45 minutes or so before I was taken into a cubical for assessment. The nurse did an ECG. She glanced at me and said, ‘I’ll just call the doctor’. I asked what she could see on the ECG and she replied, ‘I think a bit of ST elevation’. I burst into tears.

I knew from work that heart attacks, the ones with total artery blockage, involved ST elevation. The nurse tried to comfort me and offer alternative suggestions, but this was the confirmation for me. It made sense in terms with my symptoms but not really for me. What had caused it?!

Blood tests followed and a Cardiology consultation – that was a blur really. I kept having waves of symptoms on and off throughout the day. That evening I was blue-lighted to Glenfield Hospital in Leicester.

While the nurse was asking me questions, I had another wave of symptoms – the worst yet, I had to rate it a 10/10 when the nurse asked. I couldn’t imagine anything worse at that time. My poor husband was stood by the bed and all he could do was watch and wait for the nurses to act, which felt like an age to him as the nurse was watching my ECG to see what was happening while I was crying out in agony and the blood pressure cuff felt like it was going to chop my arm off.

It was around midnight when I was taken to the cath lab for an urgent angiogram. The angiogram lasted twice as long as the doctor told my husband it would. All that time he was sat outside waiting for news. During the procedure, my artery was not cooperating – that’s why it took so long – each time the wire was moved into my left anterior descending (LAD) artery, the artery was going into spasm and made it difficult to see what was going on.

The doctor was talking to his colleague: ‘there’s no atherosclerosis, do you think dissection?’ I wasn’t sure what he meant. I’d heard of dissection in biology at school but I couldn’t put it into context here. I didn’t ask. I was so tired; I couldn’t think straight any more.

I was in hospital for 18 nights. I spent most of the first week sleeping, which was better than when I was awake as that was mostly crying. It was weird because I hardly remember any of the doctors or nurses mentioning heart attack when they spoke to me. I started to wonder if that was actually what had happened.

Then I had another episode of pain – I thought It’s happening again. The doctor told me I needed to go back to the cath lab. The prospect terrified me! My first experience had been horrendous, not so much the procedure itself but the removal of the catheter which had been done the following day because it was left in initially in case I was taken back for another look. By this point, I had done some reading about artery dissections and this made me aware that angiograms can cause dissections so I was fearful of another procedure. I refused to go to the cath lab.

The next day, a new doctor came to speak to me. He explained about my heart attack, that the dissection was like a bruise inside my artery which was swollen and blocking the flow of blood, and something had caused it to suddenly appear, but he didn’t know what that would be – nobody knows. This kind of dissection is rare but he’d seen a few over the years.

He said he thought I’d recover well. He thought the episode of pain I’d had the previous night was probably related to my artery healing itself and explained the challenge for my heart to do that whilst still pumping – there wasn’t a way to pause my heart to let it rest and heal so the best option was to take medication to slow things down. It all made more sense. I still had a million questions – for another day!

The next two nights, at around the same time, 8pm, I had further episodes of pain. The same conversation ensued with the doctor who wanted to take me to the cath lab. I responded with the same refusal. My third strike. The doctor said that I’d have to go if it happens again tomorrow. I did everything I could to avoid clock watching, scared what 8pm might bring. Thankfully, it didn’t happen again, but this did lengthen my stay as I wasn’t allowed home until I’d been pain free for a few days and I had to wait for a cardiac MRI for investigations.

Challenging my diagnosis

I clearly remember the day I was discharged, and the washing machine spin cycle of mixed emotions with dark thoughts infiltrating the colours! I was glad to be going home, thankful that the doctors felt I was well enough to leave and didn’t need their ongoing supervision or more medication tinkering but I was fearful of being so far away from them.

I was glad to have the ECG leads and stickers off my chest and to not have to negotiate a bathroom trip wheeling my metal friend beside me any more! The discharge process took a while. I waited for my letter and carefully read it when it arrived: Unfortunately, the angiogram caused a dissection. What? That isn’t what I was told.

I questioned it with the discharge lounge nurse. She called the doctor who wrote it, a name I hadn’t heard up to that point. She had not been involved in my care and wrote the letter from my notes but had misunderstood. She went away to amend the letter. Good for you, the discharge lounge nurse said to me. I didn’t realise until much later on, the significance of that moment as an early challenge to having people understand my diagnosis!

Amended letter in hand, I walked to the car park like an elderly lady. How long was I in there, 50 years?!! I sat in the passenger seat, pulled the seat belt across and clicked it in place. The pressure of the belt across my chest was unbearable, I had to hold it away slightly. My fear level was creeping up, did I really want to leave the safety of the hospital?

My husband started to drive and it felt like a hundred mph, can you slow down a bit? I asked… ‘erm, not really’ he said, ‘I’ll cause an accident if I’m going much slower.’ He was already going slow. He was as worried as me really!

It was good to be home but it took a bit of settling back in. It was so quiet at night, no noises from machines or fellow patients – which should have been a good thing but it reminded me there was no nurse within close range. I couldn’t lie comfortably on my side, especially my left side – absolutely no chance of wearing a bra for long periods of time! I’d go for a short walk each day to get some fresh air but it left me exhausted. I slept a lot! Was this my life now?

A few weeks later, I went for an assessment to begin cardiac rehabilitation. This felt like it would be a step in the right direction. The nurse discussed my case with one of the doctors on duty that day and they decided to delay me starting because I was on warfarin – a cardiac MRI in hospital had confirmed a thrombus towards the bottom of my artery, below the dissection, so I was changed from aspirin to warfarin for a few months to disperse it.

I was disappointed to begin with but had managed to convince myself in the time since leaving hospital that moving too much might dislodge the thrombus and cause a stroke so in reality, I was glad to delay cardiac rehab! I eventually attended cardiac rehab in July and August and it was a great boost to my confidence.

About four months after my heart attack, I had a follow up cardiology appointment. I was armed with a folder of journal articles I’d printed about Spontaneous Coronary Artery Dissection and a list of questions. The cardiologist asked me a few questions about how I was doing, told me the report for an echocardiogram I’d had done the previous week looked good, ‘considering’ (further explanation here would have been good but I was too busy thinking about my other questions to pursue it), and that I could stop warfarin now and would go back onto aspirin.

Oh, just like that: How do you know the thrombus has gone? ‘It will have by now’, he replied. Okay… I opened my folder. Out of the corner of my eye, I saw him roll his eyes. Really?

I explained that I’d been reading about heart attacks caused by SCAD and had some questions. Most of my questions received responses of only one or two words. I felt dismissed, like I was wasting his time. I left the building and was fuming. By the time I got home, I remembered the doctor I had seen a couple of times while I was in hospital – what was his name? I messaged my sister to see if she could remember: ‘I’m sure it was Adam, or similar’. First name or surname?! ‘Surname’, she replied. I searched the staff list on Glenfield’s website. Dr David Adlam was the closest fit, it rang a bell – my sister said, ‘yes definitely, that’s him’. So, I emailed him… Little did I know how much that email would change my life!

My appointment with Dr Adlam was very different from my original cardiology follow up. I was able to ask my list of questions and it felt great to be able to discuss everything even when answers were not always available. A few adjustments to my medications and I left feeling a bit more knowledgeable about SCAD and certainly more reassured about the future and making a good recovery.

I’d say it took me about 18 months to fully recover. After a year, I felt pretty good but a further 6 months along I realised that at one year I wasn’t quite there yet. I was shocked really at how long it took but, with hindsight, I realise that it is easy to underestimate the impact of a heart attack because you can’t see the damage it caused and it can be difficult to gauge progress.

I was off work for four months then started a phased return, initially just two hours a day – which sounds ridiculous when I think about it now but I couldn’t have done any more, and I slept all afternoon afterwards. I gradually built back to full time after six months. And my job is an ‘office job’, working at a computer all day.

To this day, I have no idea how people cope returning to a more physical job after SCAD, let alone those who are parents caring for babies and young children. I am full of admiration for them. Everybody is different, of course, and we each do what we need to do to get through what life throws at us – and hopefully, succeed!

I feel extremely fortunate that I haven’t had many problems with chest pain or other ongoing symptoms after SCAD and I’ve never been back into hospital for any reason, recurrence nor scare. I’ve had a few occasions where I felt unsettled, my heart racing which made me feel uneasy and wary of falling asleep in case SCAD struck again but I’ve never felt so concerned that I sought medical attention. Long may this be the case!

Starting out on a mission

After I left hospital and started to connect online with people who had experienced SCAD, I realised how fortunate I had been in my encounter: from having a strong enough suspicion about my own symptoms to raise the alarm, to the swift actions of the first responder and the paramedics who took me to hospital (even if they didn’t think it was my heart!), to getting my diagnosis and meeting Dr Adlam.

I was horrified to read what many others had gone though, especially the amount of people who described the same symptoms I had but were not taken seriously. So many people being told they were having a panic attack when they were actually having a heart attack. It was frightening. Something had to be done.

When I returned to see Dr Adlam in March 2013, I told him about the other SCAD survivors I had met online – we were almost 35 in the UK at that time. I explained that I had done a sponsored walk to raise money for SCAD Research, Inc. (a Non-Profit Organisation based in the USA) who were funding research at the Mayo Clinic. We need research here in the UK, I said. And so it began… (that’s a story for another day – this one is already long enough!)

I’ve enjoyed some truly amazing opportunities since my SCAD, including serving as a Board member for SCAD Research, Inc. for 18 months (2013-2015) – an experience from which I learnt a huge amount and which contributed to me co-founding Beat SCAD in 2015 with Karen Rockell and Debbie Oliver.

I have taken part in a variety of PPI (Patient & Public Involvement) events highlighting research and ‘patient power’, I represented Cardiovascular rare diseases as part of a NIHR Patient Advisory Group (2015-2017), co-hosted a training session on Running a successful patient group at the 2016 NIHR Rare Disease Patient Day, co-presented the story of the SCAD research with Dr Adlam at the 2018 NIHR Rare Disease Patient Day, starred in a BHF film about the SCAD research, featured in a BHF blog about SCAD, and have done TV interviews with ITV and BBC plus various radio interviews and talks to healthcare professionals and the general public.

It all seems so surreal – sometimes, I’m not sure who that person is doing all those things.

SCAD is certainly life changing and I know that it has devastating consequences for some. I feel fortunate to be living a ‘normal’ life, to have experienced positive effects, and to have met so many incredible people along the way and made new friendships.

My continued hope is that the work of Beat SCAD helps to make life after SCAD as positive as possible for others.