My heart condition’s 25th anniversary by Kerry Shephard

Today (03/02/2020) marks 25 years since my heart went crazy and hit 268 beats per minute while I was brushing my hair and getting ready for college. 25 years since the doctors battled to save me in resus by stopping my heart twice and rebooting it. 25 years since I was told I was unique and had Wolff Parkinson White Syndrome.  25 years since my parents, sister and other members of my family & friends thought they would lose me forever. 

It should be just another anniversary but 25 is a powerful number for me because I was told I was unlikely to live past 25. So I crammed everything I could into those years I thought I had left to make it count – I danced in national comps (I’d been told I was lucky I wasn’t on a dance floor that day my heart lost its rhythm). I travelled for 4 months and knocked off some of the must see & do items on my ‘bucket list’. I made sure I spent time with my loved ones.  I found the courage to dream and hope. 

Over the years I’ve undergone surgery twice to my heart, I’ve made some incredible lifelong fellow heart buddies and helped establish the first surgery support group for young people with heart conditions through the amazing charity CRY – which also marks it’s 25th anniversary later this year.

Personally I’ve achieved so much. From reconnecting with and marrying my soulmate to my two beautiful miracles who I was told I’d never have. It’s not been without its scary moments and knock on illnesses but I’m still here 25 years on. I still have moments my PTSD rears its ugly head, but I’ve learnt how to manage it. To deal with the scary stuff and, in some part, lock it away. 

It’s odd to think I’m not classed as a young person with a heart condition anymore, as the cut off is 35. I didn’t know that symptoms I’d suffered during my upper school years was in preparation for the big day 25 years ago today.  I was bullied for being different or unable to keep up, both at school and in the workplace, and yet still I find comfort in knowing that there was a reason why I was that way. I have never seen myself as unique even though I was the first diagnosis in Buckinghamshire at the time. I was an oddity and there was so much interest in me from medical professionals who poked, tested and pushed me to my limits. Yet I trusted them and have so much to thank them for. Being a human guinea pig, I hope, has helped many others after me to get the right treatment. 

I’m so thankful that on that day, 3 February 1995, that things fell into place like they did. Nurse Judy, the only medical professional at my doctor’s surgery as all the doctors were on training, who had the foresight when I stumbled with my stepdad through the surgery doors to call ahead to A&E. Dr Samuels, an A&E medic who later in the day called me unique, didn’t waste any time, jumped into action and made the key decisions to stop my heart and restart it to try to reset my internal ‘computer’. The nurse, whose name I never found out, who held my hand and cradled me, told me to focus on her voice and be prepared for an elephant sitting on my chest, while the doctors working on me shot medicine directly into my heart. None of them knew that day if it was going to work and admitted they had never had to treat a 16 year old with a heart rate as fast as mine. But what they did was nothing short of a miracle. 

But one doctor in particular, Dr Kardos, is the one who took over my long term care, promised me he would look after me,  believed in me and gave me reason to think I could beat the odds – my own real life guardian angel. Without him, I would never have my children. Without him I simply would not be here. To him, I owe my life. 

I am finding today really difficult. It’s significance has crept up on me. I naively thought I’d feel the same as every other anniversary but this one has hit me a little harder. To think I’ll surpass this milestone too is so overwhelming and incredible. I want to celebrate and mark today somehow. So however you know me, whether it be from before or after my heart episode, give your loved ones an extra hug today. For me. I want today to be a day we hug that bit harder, we hug that bit longer and hug that bit tighter. Cherish each other. Thank you for reading and simply being there” xxx

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