August 18, 2015
I am a 61 year old female with a history of chronic pain associated with osteoarthritis and fibromyalgia going back several decades and also, more recently, Sjögrens Syndrome.
On Friday 10 April 2015, just after 9am, I was drying myself after a bath when I was suddenly gripped by excruciating pain which started in my central upper back and very rapidly spread to my shoulders, chest, arms and hands and was accompanied by an overwhelming feeling of malaise. Because I am accustomed to severe back pain which frequently migrates through to my chest and extends into my limbs, I was not unduly frightened despite the almost unbearable intensity of the pain. I immediately lay down on the bed and within a matter of seconds I felt completely incapacitated. I was sweating so profusely that within a short while I had literally soaked the bed. I felt very nauseous and was worried that I might pass out but I thought this was just a consequence of the severity of the pain. Eventually I managed to alert my teenage son and asked him to bring me the phone and check on me from time to time to make sure I was OK. I rang and left a message with the optical practice where my husband was working, asking him to ring me as soon as possible. Being as unaware as I was of the gravity of the situation it was some time before he was able to ring back, at which point all I was capable of uttering was ‘I need you here’. He immediately closed his clinic, packed up and drove home. In the intervening period I had decided that I probably needed a doctor and asked my son to call the surgery. By this time it was 1150am – almost three hours after the onset of pain. We were told that a doctor would be with me ‘between 1230 and 1500’ so I was relieved when he arrived just forty minutes later.
After examining me (and despite my insistence that it was my back that was the problem!) he told me that I needed to go to hospital immediately, as he thought I may have suffered an aortic dissection. On hearing those words I decided to acquiesce because my mother suffered a fatal aortic dissection when she was roughly the same age as I am now. The nearest hospital is some forty minutes’ drive away so it was a while before the ambulance arrived, during which time my husband had arrived home. On the way to hospital I recall the paramedics being concerned about my ECG as it was showing a lot of ectopic heart beats but as I had been given two shots of morphine for the pain it didn’t occur to me to tell them I have had arrhythmia for many years and had never had any issues. It was around 1630 when we arrived at A&E and I was rushed straight into Resus. By now, thanks to the morphine, I was feeling much more comfortable, and I remember feeling guilty about queue jumping the other ambulances, some of which had apparently been waiting for over two hours! At no point so far had anyone suggested I might have had a heart attack because of the atypical presentation.
A CT scan swiftly established that there was no aortic dissection (though it did reveal a mild aortic aneurism and enlarged lymph nodes on the trachea) but the first blood tests showed ‘extremely high’ cardiac enzyme levels and this was when I was told that I had probably had a heart attack – something I found impossible to believe, since I have no history of hypertension or high cholesterol – or indeed any risk factors for heart disease. Shortly afterwards I had an echocardiogram which confirmed that there was moderate damage to the left ventricle. I was moved to the Cardiac Care Unit and informed that I would have an angiogram on the Monday to try and establish the cause.
In the event, I didn’t have my angiogram until the Tuesday as they were so busy. It was very quickly ascertained that there was a blockage in the LAD, but no dissection was apparent, so they proceeded to introduce a stent, swiftly followed by a second and then a third. At this point there was a pause and I asked the cardiologist what was happening. I was told that they were ‘having a think’! Fortunately for me, he had realised there was something wrong and recognised it as a SCAD. The process of stenting was effectively shunting the pocket of blood along the artery and extending the dissection. It was decided to seal off the end of the artery and two hours later I was back on the CCU. In the evening the cardiologist visited me with some information about SCAD which he had extracted from the Leicester website. We had a brief chat and he promised to come back in the morning for a proper discussion about what had happened. I was prescribed Aspirin, Clopidogrel, Bisoprolol, Ramipril and Omeprazole and told that I was to come off anti-inflammatories immediately.
When the cardiologist came back the following morning he was armed with lots more information about SCAD. He recommended I contact the UK SCAD research centre in Leicester and the Mayo Clinic in the US as primary sources of information, as well as suggesting I may find the SCAD survivors’ group helpful. He told me that the aortic aneurism would need to be investigated at some point, as would the enlarged lymph nodes (for the latter I would be passed on to the chest clinic for a biopsy once it was safe to take me off my medications) although there is nothing to suggest at this point that either is connected to my SCAD. I was discharged later that day.
I realise now that I am very fortunate that the cardiologist had heard of SCAD and stopped the stenting procedure before even more harm was done. I also realise that it was a grave mistake to blunder on in pain for so long as I may have avoided the damage to my heart had I called for assistance sooner. This does highlight the fact that SCAD does not present like a ‘normal’ heart attack.
Since my SCAD I have retrospectively identified two previous SCAD events – one was a few months ago and was very mild and transient. I was at the bathroom sink when I suddenly felt a strange sensation in my upper arms and shoulders, accompanied by loss of feeling and strength in both arms. I assumed I had trapped a nerve in my spine and thought no more of it. Then five days prior to the heart attack I was out walking with my family when I was suddenly hit by the now familiar intense pain in my back and shoulders, accompanied by an overwhelming feeling of malaise and weakness in my arms. Since we were with family I didn’t want to make a fuss but my husband could see immediately that there was something very wrong. We were miles from anywhere and with no mobile signal, so I had no choice but to grit my teeth and carry on walking. It felt as if someone was kneeling on my back and I couldn’t put any weight on my walking poles because my arms felt so weak. I remember thinking that I must have been leaning too hard on my poles on the uphill stretches, in an effort to take the pressure off my lower back and hips. The pain only lasted about ten minutes or so and thereafter I didn’t really think about it again until my heart attack, when I immediately recognised the exact same pain, albeit much more severe. Quite naturally I thought the pain emanated from my back, since I’d convinced myself that was the cause of this earlier event.
Like other survivors, it is taking a while to come to terms with what has happened and each day holds the challenge of not allowing the fear of a repeat incident to control my life. Prior to my SCAD I suffered with chronic, often very severe pain and fatigue and I rely heavily on hefty painkillers and anti-inflammatories to enable me to get on with my life. Now I have been taken off the anti-inflammatories (which I had been on for over thirty years) I am struggling to control my pain. In common with many other survivors, I am getting quite a lot of chest pain, but even if it were easy to get myself to hospital and have it checked out every time, the recommended course of action is non-intervention, so there is little likelihood that anything would be done anyway. I try not to worry too much and to convince myself that if I am unfortunate enough to suffer another full blown heart attack, I will KNOW to dial 999 immediately.
Before this happened I admit that I was struggling to cope emotionally. With a husband and a teenage son both suffering from long term depression and myself running a small business which, though barely profitable, meant I would frequently be working until eleven at night, I often felt as if I were holding everything together single-handed. Recently I had been near breaking point and I know that my close friends were gravely worried about me. In the absence of any other likely culprits I can’t help thinking that stress overload may have triggered this event. In any case I reasoned that if I continued to allow stress to rule my life it was bound to hinder my recovery, so I made the decision right away that things were going to change. I have put the business on a back burner – I’m far too fatigued to cope with it at the moment in any case – and that alone felt like a great weight had been lifted from my shoulders. I am so much better now at not allowing things to stress me out; in truth I mastered a degree of calmness I never before thought possible! And indirectly my SCAD has helped my husband reach a more positive frame of mind as he is now so focussed on my welfare (and doing a sterling job of making sure I rest and recuperate!)
Reading other people’s accounts of their experiences has been enormously helpful. Although each person’s experience of SCAD is individual and unique, we all have one thing in common and that is the need to learn to live with what my cardiologist described as a ‘time bomb’ inside us, without allowing it to control our lives. We have to do that for the sake of our loved ones as well as ourselves. This has been just as much of a shock to my husband and children as it has to me – and after all, they are the ones that stand to lose should there be a next time and I don’t make it through. I comfort myself with the thought that there are many, many people worse off than me.
And my last thought? What I have written here is all well and good when I am feeling awake and rational but not so much of a comfort when I lie awake in pain at night, feeling frightened and alone – a feeling I’m sure all SCAD survivors can all too readily identify with.