One day in Summer 2012 I was alone at work, staying late to finish something off. Suddenly I went all woozy and had to grab the desk to steady myself. Very quickly it passed and I finished up and went home. However, I didn’t feel well at all that evening and said to my husband that I felt like I was going down with flu as I really ached. I had an early night and in the morning I felt fine again and forgot all about it.
Then a few evenings later just after I’d got into bed I started to experience the worst acid indigestion that I’d ever had. My husband was away so I suffered in silence, eventually getting up and taking some paracetamol which seemed to get rid of it. (Even at this stage it didn’t strike me as odd that paracetamol should clear indigestion).
Several days later again I was mopping the kitchen floor in the morning when the same extreme indigestion type pain came on again. This time I spent over an hour on the sofa in considerable pain before it passed and I got up and went into town for an optician’s appointment. At this point I was beginning to become concerned as these experiences weren’t very pleasant at all. However, several days passed when I felt perfectly normal before finally I was sweeping the kitchen floor one afternoon when the pain came on again.
I staggered to the sofa and managed to call my 12-year-old daughter and asked her to ring her Dad. She was absolutely terrified and managed to call my husband and then just left me!
Luckily my husband only worked 15 minutes away so arrived home very quickly. He bundled me in the car and took me to our local hospital minor injuries unit where I was immediately taken in and given asprin and GTN spray under my tongue before being hooked up to a heart monitor and an ECG taken. This was sent straight through to the nearest A&E department who said I should be transferred there. By this time the pain had subsided but I was transferred by ambulance nonetheless. I spent the night on the Acute Unit where they explained that they would do a blood test to ascertain if my heart had secreted a certain enzyme which would indicate if I’d had a heart attack or there was damage to my heart. (I now know this to be a Troponin test)
I was woken early the next morning by a doctor who told me that the test indicated that there was a problem with my heart and I would be transferred that day up to Coronary Care for an angiogram to ascertain exactly what was wrong. After he left I just burst into tears. I was only 45, slim, fit, healthy and a non-smoker. I just couldn’t believe that this was happening to me.
Later that day during the angiogram the Cardiologist asked me if I’d recently experienced a
bereavement? I replied that I had and he said ‘ah, that explains it’ and went on to advise that I had a condition called Takotsubo Cardiomyapathy otherwise known as Broken Heart Syndrome. Apparently it would right itself without treatment but with rest over the following month or so. He was right. I spent the next 4-6 weeks not being able to get any depth of breath and being pretty exhausted a lot of the time. But this eventually stopped and in the Autumn I was given a clean bill of health and forgot all about it.
Three years later in September 2015 I was cleaning the shower one Saturday afternoon when I began to suffer with acid indigestion (I do suffer with this from time to time anyway). This got progressively worse & developed into pain until I was doubled over on the sofa and the pain had moved into my left arm and my jaw. I was also sweating on my face. My husband came in and asked if I was all right and I said ‘do you know, this feels like last time’.
Instead of calling an ambulance he asked me what I wanted to do and I said ‘chuck me some asprin over and I’ll take it and see what happens’. I took the asprin and the pain stopped. I knew I should be going to hospital but was dreading it as it was a Saturday and it would be really busy. I decided to have my dinner as I wouldn’t get fed in hospital (crazy logic!! – don’t do this!) and then see how things developed.
Within an hour the pain returned so I rang 111 as I didn’t think I warranted an emergency
ambulance. They sent an ambulance immediately!
A paramedic arrived first and gave me more asprin and sprayed GTN under my tongue which stopped the pain. I was then taken to A&E again where, as I predicted, it was a very busy Saturday night. It was several hours before I was seen. I didn’t mind as the pain hadn’t returned. However, I knew I needed to be there. Again a Tropinin test indicated that I’d had a heart attack and I was transferred to Coronary Care ready for an angiogram on the Monday.
The Cardiologist on the ward joked the next day that he knew that he’d find another ‘Broken Heart’ when they went in and looked. Instead during the angiogram I was told that I had a small tear in an artery which would heal on its own. I asked how quickly I could go back to work and was told probably a couple of weeks. I left hospital with four different drugs to take (beta blockers, blood thinners, asprin & statins). I had very little information and was astounded that I should have ‘furred up’ arteries at my age and with my good health and with a Cholesterol level of 5.5. No one told me that I actually had a torn artery and it was nothing to do with my arteries being furred up.
After a couple of weeks of rest I went back to work but struggled. I was exhausted all the time and when I was home I did nothing but sleep. Eventually I broke down with exhaustion and a friend rang the doctors. I spoke to a GP over the phone who asked me how long ago I’d had my heart attack. When I replied just a month she was incredulous and immediately signed me off for another two weeks and then stipulated a phased return to work.
Eventually by Christmas after a careful phased return to work and weekly Cardiac Rehab classes I felt back to normal and was excited to get back to living life to the full. We had a wonderful Christmas and in the January made lots of holiday plans for the year ahead. Then one day at the end of January I said to my husband ‘I think I’ve over done it’. I felt just awful and the next day I woke up and it was as if the clock had been wound back five months and I was recovering from my heart attack all over again. I returned to my GP who just wasn’t interested and actually said ‘I have no idea why you’re feeling like that’ and that was that. I was so upset that I spoke to the Cardiac Nurse at my Phase IV Cardiac class (a follow on from cardiac rehab). Over the next few weeks she could see that I was struggling so badly
that she intervened and spoke to my Cardiologist at the hospital and arranged an appointment for me.
In the meantime I idly Googled ‘torn artery’ one evening and was stunned when SCAD came up. When I read about it I knew instantly that this was what had happened to me. In this day and age when we Google everything I don’t know why it took me all those months to look the torn artery up.
Several weeks later I finally saw my Cardiologist and she listened patiently and said that they’d do an MRI of my heart to see what was going on. I asked her about SCAD and she waved it off saying ‘that’s an American thing, we don’t call it that in the UK’ and that was it.
Eventually the MRI was done in April but it wasn’t until June that I got the results which showed a partial blockage of my left circumflex. I was overjoyed that finally I knew what was wrong as I was still struggling to the point where all the holidays that we’d booked had been cancelled and I was struggling to get to work most days. They told me that they would do another angiogram and probably insert a stent. I was so relieved.
My relief didn’t last long very long. The angiogram was done in the July and the cardiologist told me that there was no blockage and there was nothing wrong! I was sobbing saying ‘why am I so exhausted if there is nothing wrong?’ They couldn’t answer my questions and I was discharged. It was at this point that I decided that I needed to be referred to the SCAD experts in Leicester. I went to my GP and explained. He actually made me cry. He said he’d never heard of SCAD and doubted I had it and there was no money to refer me to Leicester!
Devastated I went home and a few days later posted my experience on the SCAD Facebook page. That action was to change my life as Karen from BeatSCAD contacted me and advised me that she’d spoken to Dr Abi at Leicester about my predicament. Dr Abi wanted to speak to me. When we spoke that morning she told me that if I requested my records from my local hospital I could send them to her so that she could verify that I had SCAD and would then write a letter to my GP confirming this and suggesting that I be referred as it is a rare condition.
I burst into tears of sheer relief when I put the phone down.
It took over two months to get the records from my hospital and I asked them to include the
angiogram from 2012 too. Once Dr Abi received them she rang me and confirmed that it was SCAD and the heart attack in 2012 was also caused by a SCAD. She said she would write to my GP to try and get the referral to her.
In the meantime I was still feeling exhausted. In all the time that I’d been feeling exhausted again at no time had the hospital or the doctors taken any bloods from me. My sister, whose daughter also has a heart condition, was astonished but suggested that I could be low on iron. I decided to start taking an iron supplement to see. Within a month my energy had returned. After subsequent reading of posts on the SCAD Facebook pages (both UK and US) I also took a course of Vitamin B12 which seemed to be the final piece of the jigsaw in terms of feeling well again.
Finally in December 2016 I got my appointment with Dr Abi at Leicester. I cried when I walked into the hospital. It was like a dream come true to be there! She talked me through all my previous angiograms and advised that they would do an MRI and an MRA to fully check over my heart and associated arteries and to also check for an associated condition called FMD. She also stopped all my medication except for the blood thinners. I’m pleased to say that all was well with the MRI & MRA and so my blood thinners were stopped also and I’m now just being contacted every six months by phone from Leicester.
Meanwhile, I’m feeling very well and completely back to normal. I am on red alert though as I recently lost my Dad after a battle with cancer. If there is a next time I shall be dialling 999 immediately and have all my SCAD information packed in my bag ready to hand over.