Harriet's story

Published Wed, 15 Nov 2017 by

I had a SCAD in November 2014. Prior to this event, I was a very busy HR Director working 60+ hour weeks, mum of 3 lovely people and generally living my life to a vague plan, blissfully unaware that the rug was about to be yanked from under my feet.

Following the diagnosis of SCAD and initial treatment at UHW Cardiff, I began a search for any information about this rare and little known condition. I felt isolated, traumatised, totally outside the norm of the average cardiac patient if my fellow CCU inhabitants were anything to go by and whilst trying to be positive, fairly uncertain about my future. At age 44, having had no prior symptoms and with no apparent risk factors, being told you have heart disease, that you’ll likely take medication for the rest of your life and that you need to make changes to your life in order to survive are fairly tough things to hear. All I seemed to have was a long list of questions that no-one had solid answers to. There was a lot of sympathy and care (in the main) but not much expertise or detail available. I like to know the skinny, to have the details and to be informed. This way I feel I’ll be able to make the best decisions for me and my family. After much internet searching, I discovered Dr Adlam and Dr Al-Hussaini at the Glenfield Hospital in Leicester. They were running a research programme for people just like me. Not only would I be able to get some answers about my unusual condition, but I might also be able to help others who were in the same boat. This was terrific news. I registered, was accepted and got a date to attend for a research day in August 2015. The fact that they were accepting 100 patients initially and I was one of the lucky ones, made me realise how few people had been diagnosed with this condition.

On the day, I met Dr Al-Hussaini early in the morning and underwent a string of tests, all designed to help her understand my SCAD and my body. These included MRI and CT scans, blood tests, some physical exams and a long Q and A. She was also able to examine my angiogram from the day of my SCAD and so could see what the Cardiology team who treated me had seen at the time. I believe that Dr Adlam and Dr Al-Hussaini are the only doctors in the UK that have had the opportunity to review hundreds of angiograms in this way, thus making them uniquely placed to be the experts in this matter. Dr Al-Hussaini and I were able to look at some of my results together, there and then, and she was able to offer me her expert advice and opinion - something that I now appreciate is utterly priceless. She was reassuring and empathetic, professional yet entirely human, answering every question I had in detail and able to illustrate her answers with evidence from our day together. Most importantly for me, we were able to look at MRI scans of my main vasculature, reassuring me that there were no immediate causes for concern. We were able to agree that actually my future looked a lot less bleak and distinctly more rosy. That’s one of the main problems when you’ve had a SCAD - the ‘spontaneous’ part tends to make you incredibly anxious about what might go ‘pop’ next and when. I also felt proud that I was contributing to the knowledge bank around this little known condition; that my data might help to unlock secrets not yet shared; might help put some of the puzzle pieces into place and I that could help future SCAD patients in their recovery, maybe even prevent this from happening to others. The fact that there is also collaboration on an international scale makes this even more exciting and a realistic prospect for the future.

This day spent in the company of caring professionals who are expert at what they do allowed me to make the active decision that I had to live my life to it’s fullest and make positive changes that would mean I was happpy and healthy for the future. My SCAD is a prominent and important milestone on my roadmap, but it doesn’t overshadow and terrify me. I am certain that a large part of that is down to the opportunity to participate in the research day with Dr Adlam and Dr Al-Hussaini and for a little bit of their incredible knowledge and insight to rub off on me.