Living with ARVC and an ICD

6 days after my 26th birthday I went for a run one evening (15th June 2016) with a friend and a group of runners and I suffered a cardiac arrest after finishing the run. I have no memory of it it’s what I’ve been told by others. I had CPR performed on me at the scene and was shocked twice when I got to hospital. I was then put into an induced coma for 3 days. 2 weeks later I had my ICD fitted (29th June 2016) and I was allowed home the day after. I don’t have much memory of being in hospital for the 2 weeks in June I just piece it together by other people and Facebook status’ and Instagram posts. It didn’t bother me that much but it was a struggle as I became very dependant on other people when I first came out as I couldn’t dress myself or anything as my left arm was very sore. As time went on I got used to it. I went to see my consultant in July at St. Thomas’ he gave a possible diagnosis of ARVC. 3 months later (1st September 2016) I had my first shock. I was on my own walking from the town to my boyfriends house. It was horrible I cried but after a while I felt normal again. I got checked at the hospital everything was fine it did what it was supposed to do. 2 weeks later (14th September) I was walking to the bus stop and I had another 2 shocks one after the other. Again I broke down I was shaking and I phoned an ambulance. Luckily people were around to help me and stay with me until my mum and the ambulance came. I was taken to hospital and straight to a&e. They told me I wasn’t allowed home that night as I had to see the consultant in the morning so I prepared myself for what I thought would only be a night back in hospital. I was wrong, the consultant came round the next morning told me he is going to start me on medication (Bisoprolol – Beta Blocker) and told me I wasn’t allowed home and had to be transferred to St. Thomas’ in London. I broke down all I wanted to do was go home.

Katie Warrington

A couple days passed and I was eventually transferred to St. Thomas’ on the Saturday. When I got there I was told I would be having tests done for different conditions. The main one they wanted to do at first was the ajamline test for Brugada Syndrome but then after they did and ECG one night they said they only wanted to do an EP study with a possible ablation. I had an ICD check while I was there and everything seemed to have calmed down since I started my medication. 2 weeks later I finally had the EP study was given a definite diagnosis of ARVC and was allowed home the next day. Coming home was a very scary process I now suffer with really bad anxiety and am scared to leave my house. I have just begun to go back to my boyfriends house but I won’t walk anywhere. I feel like I’m constantly living my life in fear. Living with an ICD is going to take a lot of getting used to for me but I’m hoping with the right help I will get there.

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