The ambulance snaked through the traffic with the deception of apathy. I knew it was dodging cars at full pelt, but the 20-minute journey seemed to take forever. The paramedic busied himself with an in-journey ECG which could be sent wirelessly ahead to the ER department of the local district hospital. Both he and the driver were stumped and their confusion, and concern, was palpable.

They were having to deal with one of the rarest forms of cardiac events, although they weren't to know that until hours after. The patient was a 35-year-old professional woman, slim, apparently fit and healthy, dying from a heart attack in front of them.

From the moment they’d found me semi-conscious, all the signs of a massive Myocardial Infarction (MI) were being played out in front of their eyes: severe chest pain, sweating, nausea, crippling pain down my left arm, struggling to catch a breath, hardly able to speak.

Quick-thinking and professional, the paramedics responded to the symptoms, not the person, carrying me to the ambulance and administering traditional first-response drugs for an MI. But this was no traditional MI.

The ECG had shown the unmistakable tracings of an acute heart attack. I was rushed straight to Resus and found myself surrounded by innumerable medics. ‘Was I drug user?’… ‘No’ (a question asked several times)… ‘What had I been doing when the chest pain struck?’… ‘Working on the PC’. Little made sense to them other than the clinical signs of a person struggling to survive a heart attack right under their noses. I was treated with thrombolytics but my condition didn't improve. The district hospital had reached the limits of their expertise.

I was transferred to a major hospital, an hour away, for an emergency angiogram. I remember very little about that first night, other than a sense of foreboding. I had been stabilized but was still in a critical condition.

The following day, what seemed like the entire cardiac department was gathered round my bed. It was then that I heard the words that were to spin my life around: Spontaneous Coronary Artery Dissection. I was the first case they’d seen in the region; SCAD was “as rare as hens’ teeth”; I was “lucky to be alive”; The MI had been a whopper, of the Left Anterior Descending coronary artery (LAD), otherwise known as ‘The Widow Maker’.

Over the next few days I began to get fuzzy explanations: they could tell me WHAT happened but not WHY. The lead cardiologist showed how the artery had dissected internally, causing the block. In my case it was described as ‘Idiopathic’ – of unknown cause. The consultant who had carried out the angiogram explained how they had fitted a long stent inside the artery to keep it open. But, he said, my heart had suffered severe, irrecoverable damage. He drew a diagram showing how the bottom third was dead tissue. I wasn’t out of the woods. In fact, the battle had just begun.

Fast forward 12 years to today, and I still don’t understand those elusive WHYS. I’ve speculated endlessly: I was a long-term sufferer of depression following childhood trauma, had an unidentifiable auto-immune disease, suffered painful periods, and had gone through a truly painful bereavement just weeks before the SCAD. I now suspect that my body had encountered its perfect storm. The SCAD, as arcane to me as spontaneous human combustion, was the bursting of the dam.

The medications I've been on have varied both in type, combination and dose. The first year or two post-SCAD was terrifying, a deep-seated fear that it was going to recur, that I had cheated death and that dark angel wanted his dues. Health-wise I wobbled from weak to ok, eventually feeling fit enough to holiday away from home, but still in the UK. I believed I was turning a corner, and moved into a small-holding with plans to grow my own veg. But this halcyon period was short-lived.

A year after the move my heart health started to deteriorate. It felt as if I’d taken two steps forward then three steps back.

I've spent the last 12 months on the heart transplant waiting list. It’s a difficult time… every unexpected phone call is greeted with a mixture of hope and terror. I know I need a new heart to have any future, but the process is harrowing.

A positive from being on the transplant waiting list is being able to say what I want done with my explanted heart – the SCAD-damaged one. Arrangements have now been made that it will be sent to the Leicester University Research group, where its pathology and histology will be studied in detail by a world-renowned histopathologist from Imperial College, London.

It is a truly exciting time in SCAD research, and I am thrilled and honoured to be playing a part in it. Hopefully, one day those WHYS will be understood, prevention will be possible by identifying people with risk factors, and treatment will be fast and appropriate to this mysterious, rare condition.