Long QT Syndrome is a rare heart condition in which the heart takes longer than normal to repolarize (recharge) after a heartbeat. This can lead to palpitations and/or potentially dangerous arrhythmias, leading to blackouts/fainting, seizures and death. Long QT Syndrome is one of the leading causes of sudden cardiac death in otherwise young, healthy people.
I was seventeen years old when I started to experience disturbances with my heart rhythm. My heart rate would ping from one extreme to the other, shooting up at inconvenient times, or it would slow down to the point that I had to sit and wait at the top of the stairs while I waited to feel less faint.
Thanks (but no thanks) to the frequency of these episodes, it was pretty easy for my doctors to prescribe me Propranolol to control my heart rhythm, although at this point I was not yet diagnosed with Long QT Syndrome. ECG monitoring pointed to episodes of supraventricular tachycardia (SVT for short – a faster than normal heart rate) and bradycardia (resting HR below 60bpm in adults) which was briefly controlled by the medication. Off I went to drama school with my medication, a high dose but it was working.
Eventually, the symptoms started to come back, and then they got worse. At one point my chest pain was so bad and continued for a few days so my best friend and I got the Tube to the A&E department, where we spent seven hours (she hates hospitals) and they didn’t find anything new, just the standard extra electrical activity from my SVT. Another time I simply passed out while walking down the stairs and suddenly I was on the floor with a huge gash in my ankle. We started to lower the dose of the Propranolol, and eventually, the cardiologist decided that there was nothing we could do for now as medical treatment was unsafe, but it wasn’t bad enough to warrant any other treatment.
My heart will go on (and on…)
I continued for a few years just living with a random heartbeat. It was annoying, but I got used to it. Most of my A&E visits were not cardiac related, as around the same time the rest of my health conditions started to get worse. I had ECGs (electrocardiogram – tracing of the electrical activity of the heart) consistently enough to be fine with GP input.
Around the age of 23, my SVT really started to play up again and I had a few A&E trips. One time a nurse somehow managed to get the cannula straight through my vein, which he only noticed when I pointed out that my blood was dripping onto my coat and that I was about to pass out. At the time I had a housemate who would give up her time to come and sit with me and escort me to the toilet (not her favorite part of the experience) and buy snacks for when I was finally allowed to eat again. Every time, it was the same thing – it’s your SVT, it’s good you came, if it gets worse come back again.
So we continued this game. In the summer of 2018, I moved into my own apartment, which was great. My best friend and my mom helped me paint it. A couple of weeks later I experienced some horrible chest pains that were making me almost constantly dizzy, so after a couple of days, I called 111 who sent me an ambulance although by now it wasn’t quite so bad. I wasn’t having a heart attack or anything life-threatening, so they said I don’t have to go to the hospital, but they asked me “did you know you have a prolonged QT?” – I did not. I didn’t even know what that really meant. They advised me to see my GP urgently, but call the ambulance if it got worse again. I saw my GP the next day, who gave me similar advice – I was due to see a new cardiologist in January.
A month later, I woke up just after midnight with the worst chest pain I had ever experienced. I honestly thought I was about to die. I literally reached for my phone and was ready to text my family group chat that I love them, my colleague that I wasn’t coming into work because I was dying, and call myself an ambulance. I was too dizzy so I sat up for a few minutes trying to breathe, grasping at my chest in tears. For whatever reason, I decided to put a halt on my plans. In retrospect, calling the ambulance would have been the correct thing to do so they could see exactly what was happening. I did text my mom, just to say that I had really bad chest pains and that I was going to see how things go.
After about an hour, in which the pain didn’t subside but I did feel calmer, I got up and slowly walked around my apartment to see if the movement would help. I had a glass of warm milk, and did my basic obs (yes, I have a blood pressure/HR machine by my bed) and decided I was too tired to deal with the hospital. I was too scared, too wired, and too chest pain-y to sleep. My breathing wasn’t the best but manageable. I decided it was safe to close my eyes around 5am, and after two hours of sleep I got up and went to work, where I felt okay at my desk but during a meeting kept fading in and out with a spectacularly low HR. 28bpm is not normal for me when awake, even if the meeting is boring.
I drove home and after a few hours I decided to call 111 for advice, and once more they sent me an ambulance. I sat in my recliner while they looked at my medical file (I have a physical copy at home), put electrodes on me and petted my cat Lily who watched the three paramedics suspiciously. They decided to take me to the hospital, and I’m proud to say that was only my second time in an ambulance. Not my planned Friday night, but oh well. The A&E nurse did an excellent cannulation.
After all my tests were done, an on-call cardiologist came to see me. She ordered some medication for the pain and a chest x-ray, just in case. Eventually, she came back and that’s when I got diagnosed with Long QT Syndrome. She told me that I really ought to be coming in as soon as I feel these chest pains and extreme changes to my HR, which is fair enough. This is important advice for anyone even without a heart condition – it is far better to be safe than sorry in these cases.
I saw my GP, who gave me similar advice and to avoid stress and strenuous exercise. My old NHS trust moved my cardiology appointment to February which was inconvenient but I felt like I knew enough to not worry too much about this. A lot happened with my other health conditions at this time but eventually, it was time for my cardiology appointment. Guess what? Because it was a different NHS trust that I’d left when I moved, they had nothing about my new diagnosis. But the cardiologist did laugh out loud at how quickly my HR changed. Thanks, I find it funny too.
I finally saw my new cardiologist this April 2019 (I didn’t want to see the other one again) and he seemed pleased with the management of my heart conditions, apart from one thing.
“I don’t want you swimming,” he said seriously when I described what kind of activities I do with work. “Don’t do it. You can go in shallow water if you are accompanied. But don’t swim.”
Well… I like swimming. Even with a bad shoulder, a useless ankle and crappy legs, I can swim well. I enjoy going swimming at work (I teach at a SEN college) and I love being in the water. Sure, the ocean freaks me out, but I love swimming in it on holiday. Weirdly, this is probably my least favorite thing about my heart condition. I understand why (if my heart stops in the water, I drown, if I have palpitations in water, there’s too high of a risk I can’t get myself out) but I just want to swim. Shallow water is boring. Swimming is the one thing that despite the restrictions my health puts on me, I could actually manage doing and felt worth the extra pain and fatigue.
Nothing Breaks Like a Heart
Aside from no swimming, and not doing strenuous exercise, Long QT Syndrome can be strange to manage. After doing my research and seeing that sudden loud noises can trigger it, I realised that many of my night episodes were probably because of my phone vibrating on my bedside table – not particularly loud, but in the silence, it does make me jump. I’ve had the vibrate function switched off for about five months now and the night episodes have decreased. Weird adjustment, but it works for me.
There is a lot of monitoring involved, as there always has been since I was seventeen. I hate the goo of the electrodes, and I hate when you walk into the ECG room and its cold and you have to take off your bra. I hate the ambulatory ECGs (worn for 24 hours or a week) because they’re itchy and you can’t take a bath (at the moment I can only take baths, as showers make me really dizzy). I don’t mind echo’s (echocardiogram – an ultrasound of your heart) because I find it cool that I can hear the whoosh-whoosh of my heart. I’m used to the blood tests, which my mom usually does for me (she’s a nurse) so these don’t bother me in the slightest.
A big struggle has been medical management. I have a whole load of other conditions which require medication, so I had to have a long review to decide what was worth the risk and what was not. The problem with Long QT Syndrome is that anything or nothing at all can set it off, so medications that interact with the electrical activity of the heart might just be the thing that top it off. On the other hand, without some medication, I don’t function properly, which is also a risk.
Although this all can sound scary, it’s not. Possibly because I got used to the diagnosis and the warnings a long time ago. The people at my work are incredible and there is an Occupational Health nurse who makes sure that I am supported at work, and my colleagues have adjusted to my humor about my unfortunate health. My friends likewise make sure we can do things together (so if I can’t go swimming, I can join them later for tea) and laugh at my jokes. I think that’s an important part of any illness, disability or condition – having people, whether that is your family, friends, or colleagues – who keep you included and feeling like yourself.
Long QT Syndrome really isn’t the best. While I can rock an ambulatory ECG monitor with a Calvin Klein crop top, the reality is not so pretty. Fortunately, I have a wonderful support network, some great doctors and the wonderful NHS 111 service at hand.
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