Fund in Memory of Charlie McCulloch

On the 29th of June 2011, I suddenly became aware that my heart wasn’t beating. Then I woke up. My first thought was “S--t, I’ve had a stroke,” and I went and looked in the mirror to see if my face had dropped. It hadn’t, so I was totally relieved that I hadn’t had a stroke. I then thought that maybe I should just check that I was OK, and rang my after-hours doctor. They sent an ambulance, which came quickly.

The paramedics asked me what I had taken. They clearly thought I was snorting cocaine or burning crack or something, so I quickly set them straight. They pumped me full of oxygen and took me to the hospital, where I sat for several hours before an ill-informed doctor told me that I had had a seizure. Excellent. I am epileptic and training to be a nurse. This just wasn’t an option. I stayed overnight, but unconvinced at their diagnosis, I questioned the doctors over and over. They thought it was some kind of absence seizure. I left the hospital with an appointment in 6 weeks to see a neurologist.

The very next day, I collapsed again. This time, a friend drove me to see the doctor. I asked, what am I supposed to do, I’d now had two “seizures” in 15 hours. This was not normal, and I let them know it! I carried on having days where I’d be fine, and other days where I would have several episodes. I didn’t always lose consciousness, but had an overwhelming feeling on impending doom, and could definitely feel my heart stop beating. This went on for a couple of months, with a few hospital stays in between. On one of the stays in hospital, I was in a neurology ward. I was given a 24 hour ECG, and then told I could go home. Literally, as I was walking out the door, they called me back to do another ECG. I asked why, as usual, and they told me that my 24 hour ECG had showed prolonged QT up to 593 m/s. At this point, I had no idea what QT intervals were, and I certainly didn’t know what a prolonged one was. The neurologist said my ECG that he re-took was fine, and that I could go home. I was obviously worried about this QT interval business, and asked if I needed to see a cardiologist. The neurologist said no, and admitted that even though LQTS can cause similar symptoms to mine, he didn’t think this was what it was. So, I carried on with my life, had an EEG which is a beautiful multi-lead monitor glued into my hair and scalp to see if I was epileptic. When I had it removed in August, we found out that I wasn’t epileptic. Not that I kept telling the doctors that, or anything.

I was staying at my friend’s house, and I continued to have these episodes. She was pretty cool about them because she is a student nurse. She goes with the flow and tells me what has happened. Then one day I had been sitting on the sofa and woke up on the floor - with my friend looking over me looking really concerned! My sternum really, REALLY hurt too, and I asked her what the hell she had done to me! It turns out I’d had an episode.

She had been her normal, chilled-out self, and checked my breathing and pulse. I had a pulse, but it was massively irregular and too fast to count. She pulled me onto the floor (good effort) and rubbed my sternum with her knuckles, which seemed to be enough to get my heart into a normal rhythm and also to rouse me. I sat up, back to normal yet again, and frustrated that this had happened. An ambulance arrived and hooked me up to an ECG. My QT was 650. The rushed me straight to the hospital and a cardiologist saw me straight away. He went through the whole rigamarole of “We need to admit you,” “We need to find out what is going on.”

At this point, I was so damn fed up with being in hospital (don’t forget I work in one too!!) that I said no way, I’m leaving. This was the turning point for me. The doctor said “If we don’t admit you, you could die.” No one had threatened me with death before, so I decided to stay. I was transferred to a cardiac hospital, where shortly after arriving, I had another episode. I woke up in the High Dependency Coronary Care unit. I already knew what LQTS was; as after the neurologist told me it had been seen on my ECG, I obviously Googled it! The cardiologists started me there and then on beta blockers, and I was on hourly observations. It also turned out I had quite pronounced hypotension. Not a problem in itself, but a large accidental overdose of beta-blockers later left me with a blood pressure (BP) of 38/17. Very low. Excellent. I was barely conscious. Anyway, they soon learned their mistake and put me on the lowest dose to keep my blood pressure at a reasonable level.

A few days later, I saw the electrophysiologist (EP), who explained about LQTS and the options. We agreed sticking with the beta blockers was the best plan. I was discharged 8 days later and everything was fine. I took Bisoprolol religiously, and everything was great - until the middle of September, when I had another episode while at work. I woke up and cried straight away. I was gutted, because I knew I would now need an ICD. I rang my doctor and he organized a bed at the hospital so I didn’t need to go to A&E, and I went straight to the Coronary Care unit. It was a Thursday morning, and so I expected to see the EP on Friday. But no. No Saturday or Sunday because nothing in the hospital works on a weekend. Did I see him on Monday? No. Tuesday, YES, actually. (Did that surprise you?!). He basically said you’ve had an episode on beta blockers. You need an ICD. And two days later I had one. I was very, very scared, especially about the “testing the shock” bit, which would happen after the surgery itself. I was dreading it. They gave me 16 milligrams of Midazolam, a lot more than one is supposed to have, and I was still sat up talking away, so they couldn’t test it. I was wheeled into recovery and I was so emotional, just crying and crying. I eventually got back to my room and saw my family and friend. It was a huge relief, but the surgery had taken three and ½ hours. Anyway, since having my ICD I am a new person. I even sleep through the night now! The neurologist also failed to tell me I had severe Bradycardia overnight (37 beats/min) and 2nd degree heart block. Excellent. So I have 3 heart conditions that I only found out about at the age of 21. But actually my life is better now, and on the plus side, apparently I can’t die. :)