Jenny had a SCAD while training for a half marathon… and another one 18 months later

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I took up road cycling about 18 years ago and would often do big bike rides at weekends – sometimes 50 miles – always with a cake stop included in the route. These bike rides encouraged me to do a number of cycle sportives of 100+ miles. I loved these sportives as they would often take you on some of the more scenic and quiet roads around Northumberland. I was never very fast, but I seemed to have a good amount of stamina.

Then I tried triathlons. I’d never front crawled before, but I got some lessons and then entered my first sprint triathlon. After a few years of doing these (never doing particularly well I might add), I decided to do a half-ironman competition for my 50th birthday. A half-ironman is a 1.2-mile swim (open water) followed by a 60-mile bike ride and completing it with a 13-mile run. Once I’d completed this (I wasn’t last and there were blokes behind me), I hung up my wetsuit and continued with my cycling (but only for pleasure) and did a bit of running.

Jenny cycling

One year, to support a friend of mine, I entered the Isle of Coll half marathon and began the necessary training regime. I was 55 at the time. About six days before the half marathon, I went out for a four-mile training run. I was half way through a holiday on the west coast of Scotland in my campervan and was on a very remote part of the Isle of Mull.

I stopped for a wee and then headed back towards my van when I was suddenly aware of a severe pain across my chest and pain radiating down my left arm. It felt exactly as if I was having a heart attack. But I had these conversations in my head that “I was female”, “I was fit”, “I’d never smoked in my life”, “there was no history of heart disease in my family”, so just walked slowly back to my van. But I felt really really bad, but didn’t know why.

I lay down after taking a couple of paracetemols and the pain eventually went away. Six days later, I did the half-marathon. Not in a particularly good time and I was cross with myself. But…. I now realise that my heart had an assault to it barely six days earlier….

Anyway, another three months passed during which I found out that my mother had received a terminal diagnosis, plus my business wasn’t doing too well and I’d had financial worries. If matters weren’t bad enough, a relationship that I was in was causing me extreme stress.

Out walking on a Sunday morning, I had to stop at the top of quite a steep incline because of a pain across my chest. I thought initially that it was my asthma that I sometimes had, but I didn’t have my inhaler with me. I walked slowly back to my house and took the inhaler, but it didn’t really touch the pain.

I had been taking quite a lot of ibuprofen at the time (I don’t now), and the pain eventually went away, but came back again the next day. I ignored this. When I went to my spinning class two days later, I mentioned to the instructor that I might not manage the whole class as I’d been feeling funny. I only managed the warm up as I was feeling very nauseous.

Any excuse to get out of the spin class, I left and went home and lay on the sofa waiting for the pain to go. It never did. But I went to bed and told myself that I’d better go and see my doctor the next day. She listened to my story and took some bloods, but thought it was more likely to be indigestion. As I’d driven to the surgery, she wouldn’t let me drive to the nearest hospital and had to wait for an ambulance. All the while, I kept thinking that I was wasting the NHS resources.

Once in the hospital, they took bloods and I had to wait for the results. A cardiologist listened to my story and said that he didn’t think it sounded very heart related, but said we would have to wait for the blood results. These arrived two hours later, at which point the same cardiologist said that “yes, I’d had a heart attack as my troponin levels were 219”.

I can still remember looking at him in utter disbelief. None of this made any sense to me. I was then hooked up to a monitor machine and told that I could not use the loo and would have to use a commode! I struggled and struggled to come to terms with all the information.

They blamed my cholesterol and high blood pressure initially. I’d eaten a very rich macaroni cheese the night before. And my blood pressure had not been managed well by my GP. I waited a day for my angiogram and was given the news that one of my smaller arteries  was slightly blocked but too small to put a stent in and I would be medically managed.

I was told that I would have to go on beta-blockers and when I protested that I was worried about my low resting heart rate (47), and what the beta-blocker would do to this, I was ignored.

Five days later I ended up back in hospital with a heart rate of 35. Thankfully I was taken off beta-blockers. But my blood pressure kept on increasing. In amongst all of this I was trying to get information about why they thought I’d had a heart attack and all I kept getting back was that I had coronary heart disease – even though I had no risk factors.

In the end, it all got too much for me and I broke down and was then offered counselling to help me come to terms with their diagnosis. In the meantime, my blood pressure kept increasing. I was put on Ramipril and, although I kept telling my GP that I was getting more and more feelings of anxiety, he kept on increasing the dose.

Three months after my heart attack, I had my follow-up appointment with the cardiologist. I had a few questions to ask him. Every time I asked him a question, he responded (quite aggressively) with “You have an abnormal artery”. Every time I asked a question – he responded with this statement.

One of the questions I asked was that I felt I fitted the profile of someone who had had a SCAD (I’d done a bit of Googling), but he replied with his abnormal artery statement. I knew I couldn’t get anywhere with him during this session and I was very close to writing a letter of complaint at his level of arrogance with me, but let it go.

In time, I came off the Ramipril as it was causing me to become more and more anxious and I was put on another calcium channel drug which seemed to suit me better. After the heart attack I had been put on the maximum dose of atorvastatin but I couldn’t tolerate it and was taken off that within a month. So six months later I was only on aspirin and lercanidipine for my blood pressure.

Fast forward 18 months, and my life was beginning to become very settled. I was out of the unhelpful relationship that I’d been in and beginning to feel the best I’d ever felt in my adult life. I was still being active – spin class twice a week and if the weather was good – my usual 40-mile bike ride at the weekend.

I’d not been out on my bike for a while due to the bad weather so thought I’d get out and do a three-mile run. And this particular morning, I decided to do a fasting run (this is where you don’t have any food in your stomach – it’s meant to increase the body’s ability to burn fat). Out I went, and on the return stretch, I stopped to chat to a friend. I could only have been talking to her for about two minutes as it was really cold and I didn’t want to get any colder. So I set off again and did a very slight incline and bam at the top of this very short, very slight incline I had another strong chest pain… I walked slowly back to my house and rang 111 and was told to get myself to hospital. The nearest hospital then referred me on to the nearest emergency hospital as they thought my symptoms were that I’d had another heart attack.

At the second hospital, the blood results came back, this time the troponin level was 419 – much higher than the last time. I did really begin to think “Oh my God, what is happening to me?”

The young emergency doctor didn’t really know what to say…  I was then moved to the CCU where I met a really lovely female cardiologist who listened to all of my ramblings. I mentioned SCAD to her, but she felt that my arteries would have just furred up more. In two years I asked her? Yes, she said, that this was possible. Even when I’d never smoked, had no history of heart disease in the family, was clearly fit? Yes, she said, this can happen.

Meanwhile, I kept getting bad chest pains – which they put down to angina. I was given some morphine intravenously, which made me feel utterly dreadful (I never want that again!!). Then I became so nauseous that I ended up turning myself inside out by vomiting. It was horrendous. Still the pain was there.

The sister took my ECG, then gave me some GTN spray, which still didn’t touch the pain. She said she wanted to take my ECG again, once the pain had gone, so she waited at the end of my bed for the pain to go away. But it didn’t. She kept asking if it’d gone. Eventually, I felt so embarrassed that the pain wasn’t going away, that I told her a lie that the pain had gone so that she could get on with the ECG.

The next time I had chest pain, they gave me GTN again, this time I had a syncope and felt so dizzy and thought I was going to faint (truth be told – I thought I was going to die!). Back in came the nursing staff and put the end of my bed up to get the blood back into my head. I think the nursing staff were beginning to struggle a bit with me. I would continue to get chest pain, but was reluctant to take anything for it for fear of feeling much worse than the chest pain.

I was in that hospital for six days while they waited for a bed at the hospital that performed angiograms for the whole of the North East of England and Cumbria. Eventually a bed became available and I was transferred. I was taken through for the angiogram about 5pm.

Up on the table, I got chatting to some of the nursing staff and told them that I thought my heart attack was due to me having a SCAD. They’d never heard of a SCAD. This is the North East centre of heart excellence and they’d never heard of SCAD.

The cardiologist then came into the room and explained what a SCAD was. But he told me that he’d looked at the previous angiogram that I had and agreed absolutely with the previous diagnosis and that what he was expecting to see this time was that the artery would be completely blocked. No, I said, I thought it was a SCAD that I’d had. He just looked at me and then went on with the angiogram.

I can still hear his words when he exclaimed “Wow, the artery is clear – it’s absolutely clear”. Then he looked at me and said “you’re absolutely right – it was a SCAD as was your last one!”

The relief that I felt when I finally got my diagnosis was phenomenal. And to think that I had been sent to psychiatry because I wouldn’t accept their previous diagnosis.

The relief turned into anger as time went on. While waiting for my discharge letter, I found the Leicester SCAD research group and signed up straight away. I then found the excellent Facebook group and slowly but surely I began to feel better in myself.

I really struggled with their initial diagnosis of furred-up arteries. I had looked after myself all of my life. I couldn’t understand why they thought I had suffered a heart attack for conventional reasons. Why wouldn’t they consider any other reason? Dr Alice Wood, SCAD researcher at Leicester, has confirmed the first heart attack was caused by SCAD. There is a strong need to educate some of these heart specialists and I hope my case will help with that.

Where am I now? I have had a follow-up appointment with the cardiologist near me. He advised me not to let my heart rate get above 140 which I can do with a decent walk, so I’m hoping this doesn’t mean an end to my active life. Although I’m not so sure that actual heart rate is the issue for me – I have a feeling that my SCADs occur because of a huge increase in heart rate for some reason.

I still get chest pain and dizziness and after a visit to my GP to tell him about this and being told that it was unlikely that the dizziness would be linked to my heart, asked him if I could be referred to the Leicester group. The Facebook group has been an amazing source of support and information. I am looking forward to telling the people at Leicester my story. I’ve just felt that up here, no-one has the time to listen to it, nor the knowledge of the significance of what I’m saying either.