I decided before Xmas 2016 that I was going to get properly fit. Rather than just running the odd 5 or 10k, I would build up my running properly and run 2-3 times every week. I started this programme with my daughter and over the course of around 6 weeks I lost 5lbs in weight, my resting heart rate went down by 10 beats per minute and mentally I felt very clear headed and focused.
This was great. I had noticed looking at my Fitbit post-runs that my heart rate was getting way up into the peak zone. I also found the running hard work. We are always taught “no pain, no gain” and all that type of stuff! I wondered if I should consult my GP about this but then decided not to as I noticed this years earlier when on the treadmill at the gym with no issues.
Thinking about it, besides the positive effects, I was also getting more headaches than normal. I would just take a couple of ibuprofen tablets and forget about it. Looking back at the week before my SCAD I hadn’t been feeling well – a bit like a cold virus coming out and headaches. Ignoring this, I kept on and even joked to my boss on the Wednesday that I didn’t feel great and blamed it on the running! Ignoring all of this I ran again on the Saturday.
Then on the Sunday I felt extremely tired and cold. I ignored this and went to watch my son run in a cross-country race and then went shopping for running stuff with my daughter as a treat as we had both been doing so well with it.
I felt unwell during all of this but dismissed it. My body was telling me to rest but I had promised my daughter that we would do this, and I was going to do it. I even ran again on the treadmill in a shop as I tried out some new trainers.
On that Sunday night I had a general feeling of being overwhelmed by the amount of work I had to do both at home and at work. Looking back this must have been because I was feeling unwell. Weirdly stopping and taking a day off sick didn’t even occur to me, that is until it started…
On the Monday morning I woke up feeling very groggy and like I had a cold coming out again (similar to the previous week) but with no sore throat. I had a weird feeling at the back of my neck and a headache. I ignored this again and took a couple of ibuprofen tablets.
I rushed about same as usual, stepped out of the house into the cool air and found it easier to breathe. I thought that is odd I didn’t notice that breathing was an issue. I thought this will be fine, the tablets will kick in in 10 minutes and I set off for work.
I drove a few miles up the road and started to feel a strange sensation in the centre of my chest. Again, I dismissed it and carried on mapping out my day ahead in my mind. A few miles later, I suddenly thought, actually I really don’t feel well enough to go to work today. I decided to turn the car around and head home.
In the following minutes I became increasing aware of a tingling in my left arm and realised I was finding it increasing difficult to breathe. I then noticed that I felt clammy. I immediately thought cardiac but was reassured by glancing at my Fitbit which read 77bpm. I thought that must be OK, can’t be cardiac, surely my heart would be racing if it was? Alarmed by this point, I called my husband on my hands-free car phone. He didn’t answer so I left a message. I started to wonder if I should stop in a layby but decided to try to get back home as it wasn’t far.
Once home I paced about still feeling really ill. I was suddenly sick with no warning at all, no nausea, nothing. I hadn’t experienced anything like that before but knew it was the body’s response when it is in real trouble. I then sat on the bed and tried to get my breathing stable. After a while my breathing did return to normal and the feeling in my chest subsided.
I then called my GP surgery and explained to the receptionist what just happened. The GP called me back within minutes and told me to call for an ambulance and wished me luck. Very surprised by this, I replied that I would ask my husband to drop me off at A&E to check it out. I thought calling an ambulance wouldn’t be necessary and was a bit dramatic!
My husband, who had been on a dog walk earlier and was luckily working from home that day, agreed to drop me off at the local A&E.
I walked in to the hospital. I felt OK at this point so thought I was wasting my time. I thought, here we go I am going to be sat waiting for about 5 hours and then get sent home having wasted everyone’s time. It had crossed my mind earlier on to just stay in bed for the day and maybe even just work on my laptop from bed.
I noticed a man with blood pouring from his head. I thought crumbs he will go through quickly. I was called into the triage nurse and explained what had happened, then got called again quickly for an ECG, and then I had hardly sat down when I saw a Registrar in a side room and explained it all again. He said it sounds like you had a heart attack, I said I know but I am just describing what happened, as it was. He took blood from me and then I went off for an x-ray on my chest. I was walking around at this point thinking it was all fine.
I had the chest x-ray. As soon as I stepped out of the x-ray room I was greeted by a nurse who told me to sit in the wheelchair and that I was no longer allowed to walk about. I was then wheeled into a cubicle and the curtains were closed. I noticed that I was being seen quicker than the man with the blood pouring from his head I had spotted earlier.
The Registrar explained that my blood tests were back and I had had a heart attack. I didn’t know what to say. I was in total shock. How can this be? I felt numb. At this point I felt like I was in some sort of TV drama rather than in my own real life.
He gave me about 10 different medications one after another. I had no idea what any of it was. I would normally read about any medications before taking them, but I obediently took them. Something was sprayed under my tongue. I asked if I could phone my husband to tell him. That was a weird conversation and quite bizarre as you can imagine. I had been told I might have to stay overnight so I asked him to bring me an overnight bag.
They wheeled me into cardiac care unit and wired me up to a machine that kept bleeping. My back was hurting, I assumed at the time from being sat for so long on the couch in A&E but now know it would have been my heart. Another Registrar came to examine me and pushed a stethoscope into my chest. It really hurt. I wouldn’t have expected that to hurt. I knew something was wrong.
A while later the Cardiac Consultant came to talk with me. I cried as I recounted my story, reality was really kicking in now. At this point I instinctively knew it was the running that had caused it. The consultant scratched his head and told me that I didn’t look ill, wasn’t overweight, had normal blood pressure, have normal cholesterol and I was too young to have had a heart attack especially as I was still having regular periods.
He told me that my first Troponin levels had come back at 300 which he said wasn’t too bad as some people’s come back over 1000. Well that is something I thought.
I looked around me. Everyone was elderly and looked really ill. There was a younger man in the corner of the room. Just before I was about to settle down for the night a nurse told me that my second blood test was back and my Troponin levels were 1200. So much for the earlier comfort. I didn’t sleep much that night, not helped by the alarm on my monitor screen going off frequently.
Next morning the consultant I had seen the previous day came in with his team and muttered something quietly. I asked him what it was. He said he had looked it up and thought it might be Spontaneous Coronary Artery Dissection. Wow I thought I will never remember to be able to say that. He thought the other option might have been a blood clot on my lung which may have caused the heart attack, so I had a CT scan to check. This came back negative. He told me that I would have to have an angiogram as it is the gold standard but there was a long wait to be moved to the main hospital in Cardiff. He thought about a week. It actually took 11 days.
End of a long wait
I was eventually moved to The Heath Hospital in Cardiff where they performed the angiogram. As I was wheeled out after the procedure the consultant came out to talk to me and told me I had a “beautiful” heart, which struck me as an odd thing to say about an internal organ.
My heart was essentially normal and they couldn’t see anything particularly wrong with it. There was a one part where they thought there may have been a dissection but couldn’t see anything. Later that same day, back on the ward, I heard one of the registrars laughing about the idea of it being a SCAD. The consultant quickly corrected him and said, actually he thought that was in fact the most likely explanation.
Sore and very bruised I then left hospital, exhausted from the tests and the angiogram and having had very little sleep. I was still unsure about what had happened to me.
A glimpse of hope
Whilst I had been in hospital my, then 10-year-old, son developed a skin rash. He has sensitive skin, so it is not that surprising but as he was visiting me in hospital my husband took him to our local GP surgery to check it out as we didn’t want to put anyone at risk.
My husband explained the situation to the doctor and the visits to hospital. She immediately said that sounds like your wife has suffered a SCAD. By sheer luck, she knew another SCAD survivor, Harriet, who is also a Trustee of SCAD, very well and knew all about the condition. She told my husband to ensure that I booked an appointment with her once I was out of hospital.
When I came out of hospital my GP gave me the leaflets from Beat SCAD to read as well as a lovely letter from Harriet which I found very reassuring. The part that sticks in my mind is that she said that she couldn’t honestly say that now, several years on, that life was any worse because of her SCAD. To see her and others with the condition looking so well, some of them many years after their SCAD, made me realise that this wasn’t the end but rather the start of a new chapter.
Perhaps you didn’t have a heart attack after all – these tests are so sensitive!
We had booked a holiday of a lifetime in Barbados the previous Xmas and had not taken out insurance. It was too late to cancel. I went to see the consultant who said I would be fine to go and that the Troponin tests are so sensitive I probably had not had a heart attack at all!
This was cruel in a way as it made me hope that the whole thing might have been a terrible mistake. All I knew was that I felt terrible and that I had had a heart attack as confirmed by the Troponin tests. I had no desire to go on this holiday at all. I told my husband to go with the children without me. Only people who have ever lost their health understand why you might make that kind of decision.
Diagnosis and follow-up
As I hadn’t had a proper diagnosis for what had happened to me I was permitted by my health board in Wales to visit Dr Abi Al-Hussaini at the Leicester SCAD Clinic.
I managed to get hold of my angiogram film the day before my appointment with Dr Abi. She looked at the film for about two minutes and confirmed that I had had two dissections which had healed up by the time the angiogram was been conducted on day 11 after the SCAD event.
Following further imaging she was able to confirm that I have Fibromuscular Dysplasia (FMD) in both my iliac and my renal arteries. She explained that it is common for people who have had a SCAD to also have FMD, but the causal links are not yet understood. She advised that I should receive annual follow-ups at the clinic.
In Wales SCAD is not fully recognised or funded and my referrals were refused twice. By the way the younger man in the bed opposite me in the cardiac unit I mentioned earlier had had a SCAD too. It was then a real battle to get the funding and access to the Leicester SCAD Clinic through my health board, but I eventually managed to persuade them to allow this.
I am extremely grateful to both Harriet and to Beat SCAD as well as to Dr Abi and Dr David Adlam (who leads the SCAD research study in Leicester) and to my GP for the excellent care and support that I have received.
Harriet and I have now begun a campaign in Wales to get SCAD recognised, for survivors to be properly supported and funded and, longer term for a centre of excellence to be set up in Wales. I am sure this will not be an easy journey, but it is one that needs to be made.
Harriet was right, nearly three years on now, I couldn’t honestly say that life has been made worse by my SCAD. My life is the same as it was before except that I am now in tune with my body and I have learnt to listen very carefully to what it tells me.
Sarah, eight months post-SCAD having a go on a segway!