Jeni’s heart was ‘really pounding out of my chest and going really fast’ soon after arriving at work one morning. She felt dizzy, hot and sweaty. With chest pain, a heart rate of 211 beats per minute, and her body shaking, she was rushed to hospital where, after trying ‘every other option’, doctors injected her with adenosine. Although unpleasant, the treatment was successful. An ECG identified arrhythmia. Jeni was diagnosed with supraventricular tachycardia (SVT) and referred to an arrhythmia cardiologist.
Ironically, Jeni and her husband were ‘both extremely happy’ with this news. For a number of years, Jeni had been experiencing palpitation episodes while walking the dog, lying in bed or even just talking to someone. On one occasion she was admitted to hospital. Yet despite having ECGs, including 24 hour monitoring, her arrhythmia failed to show up. For Jeni, ‘finally catching the issue on ECG’ meant that she had a definite diagnosis and treatment plan.
Jeni felt ‘wiped out’ after the adenosine and took a week off work to recover. She still had the ‘odd palpitation’, felt constantly breathless, very tired and occasionally dizzy. Contacted by her arrhythmia nurse, she was put on the list for an ablation and prescribed the beta-
blocker bisoprolol to regulate her heart rhythm. Although initially reluctant, ‘I don’t like taking drugs’, Jeni was soon persuaded to take the medication because of continuing palpitation episodes which left her feeling drained. She describes how she felt drugged and dizzy, ‘like being drunk’, the first few days as her body adjusted to the drugs. However, while she still feels tired and dizzy and has ‘a bit of a hacking cough’, her pulse is much slower, her palpitations have eased, and she’s not as breathless.
Jeni is unsure what caused her AF. A genetic predisposition is possible. Born prematurely with a heart murmur, Jeni recalls having palpitations when very young. She also has an aunt with ventricular tachycardia (VT). Her consultant feels that she may have had an episode in the past during surgery. Jeni remembers two major palpitation episodes soon after operations for unrelated conditions. Work stress, as a teacher, may also have contributed as Jeni had worked a 15 hour day just before her major attack.
A diagnosis of AF has had a considerable impact on Jeni and has made her reassess her life: ‘I feel like I’m a little old granny, like I’m 71’. She maintains a healthy low fat diet, exercises every day, drinks decaffeinated tea and little alcohol, and sleeps well. She carries a bottle of water, ‘something I can blow into’, and a fully charged mobile while out but otherwise tries to ‘just get on with life’. Since going on beta-blockers she has more energy and feels ‘a bit more like myself – I don’t feel like the strange person that was inhabiting my body’.
Jeni’s experience of care has been very positive. She has felt in control of her treatment choices ‘they didn’t force anything on me’. Although yet to meet her consultant and on a
waiting list for an ablation*, she is satisfied with the standard of care she has received. She speaks very highly of her arrhythmia nurse who is ‘just on the end of the phone’ for advice, support, and to ‘allay any fears’. She describes the relationship as ‘invaluable’. She urges people with AF to be proactive in their treatment and to ask questions to ensure that they’re ‘not seen as a number, but rather as a human being with a personality and fears and questions and thoughts and aspirations’.
*Jenny had her ablation end January 2012
Interview held 20/12/11
It was not until she was admitted to hospital after a suspected heart attack at work that Jeni’s AF was finally recorded on ECG.
It was not until she was admitted to hospital after a suspected heart attack at work that Jeni’s AF was finally recorded on ECG.
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I had beginning of August two thousand and eleven I had a twenty four hour ECG, which didn’t really show anything. So I was just put on the back burner. My GP and the cardiologist said, “Well, next time you have an attack make sure you get to a hospital because we need to get it recorded so we can see if there’s an issue.”
I was in the cardiac unit of the A and E so I had specialist cardiac nurses with me. One who said, “Right. Okay. This is what we believe has happened.” It was then that they decided that I had arrhythmia and they showed me, the good news was, they’d caught it on the ECG so you could see. So that was excellent news. My husband then arrived and they thought it was very strange that we were both extremely happy. It was like, “Why are you so happy?” “We’ve finally caught the issue on an ECG. We’ve been trying to do this for a number of years.”
For Jeni, palpitations could be uncomfortable and painful.
For Jeni, palpitations could be uncomfortable and painful.
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It feels like your heart is going to jump out of your chest. They can be uncomfortable. They can be painful. I can imagine most people get quite scared because, to some people, that they’ll think, “Oh, I’m having a heart attack.” You can get breathless. If it’s a small palpitation attack it’ll just be, “Oop.” And it’ll just sort of beat for up to ten minutes quite hard and quite quick and it feels out of synch, your pulse will race and you might feel a bit dizzy and light headed but if you’re having a major attack, it really does feel like it’s coming out of your chest. You can feel sick. You can feel sweaty, very dizzy and you can get chest pain, which is why sometimes it presents like it’s a heart attack.
After initially resisting going on medication, Jeni found that beta-blockers helped her.
After initially resisting going on medication, Jeni found that beta-blockers helped her.
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I’m currently on beta-blockers at the moment, which I didn’t want to be on, because, of course, they lower your blood pressure and my blood pressure is already low, in the meantime, just to keep my heart regular because I was having too many episodes of my palpitations coming. So they decided to give me a small dose, the smallest dose of bisoprolol, which is a beta-blocker. So I’m on those at the moment, which were very interesting to get used to. You felt very drugged, shall I say, and dizzy, for the first few days just not quite, you felt like your body was one place and you were another place because, of course, it’s regulating everything and again, your body has got to get used it. But I haven’t had any big palpitation issues. I get dizzy. I get tired still but I’m not as breathless. Before, after my major palpitation incident, I was constantly breathless. I felt like I was a little old lady, you know.
Now I’m on the beta-blockers it’s also made me realise how poorly I was for a while and how my heart was having to work overtime. So I do feel better now I’m on them, I just don’t want to be on them long term.
Jeni, a teacher, explained how her body gradually became accustomed to beta-blockers after experiencing side effects in the early stages of treatment.
Jeni, a teacher, explained how her body gradually became accustomed to beta-blockers after experiencing side effects in the early stages of treatment.
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It’s very common in the first few days. I was warned. I took my first one on a Wednesday morning and went into work and by the afternoon I felt very strange, very dizzy, like being drunk. I felt very drunk and sort of was finding it difficult to think and so I was slurring my words a bit, which the students found very amusing. Luckily, I had another teacher with me so she sort of, “You okay, Jeni. You’re not looking.” I said, “No.” So the next day I got up to go to work and felt very peculiar, very dizzy and odd, took the dog for a walk and nearly fell over. So I thought, “No, maybe it’s not a good idea to drive to work and stand in front of teenagers.” It wouldn’t be very fair on them, especially as I work, I have a practical job and we use machine tools. If I wasn’t fully compos mentis it wouldn’t be very safe. So I took two days off, just adjusting to the tablets. You know, I felt a bit dizzy. They can, when you first start them, give you a bit of a stomach but I didn’t have that issue, which was good. You can get headaches but I haven’t. So the first few days, I mean the arrhythmia nurse actually rang me on the Thursday to check I had collected them and started them. I said, “Yes, I’m on day two and.” “Oh, they’ll make you feel a bit strange.” “Yes.” She said, “Ah.” And her next words to me, “You’re not at school are you?” “No, I decided to take a couple of days.” “Good idea.” And I’m glad I did because it got me used to them.
Jeni, who has supraventricular tachycardia (SVT), readily agreed to having adenosine to stop uncontrollable palpitations. She explained the process.
Jeni, who has supraventricular tachycardia (SVT), readily agreed to having adenosine to stop uncontrollable palpitations. She explained the process.
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So I had all these doctors milling around me and they were, you know, asking me questions and keeping me calm, as calm as you can be when you’re having a massive attack. And they talked through everything and they explained everything and they wouldn’t do anything, I was given the choice, “Do you want to have the adenosine or not?” My response is, “Is it going to stop my palpitations?” “It should do.” “Well, let’s try it then.” But if I hadn’t of wanted it they wouldn’t have given it to me.
By the time they’d decided to give me medicine I was I had to be given adenosine. I had been going for an hour and a half because they tried every other option. So then it was, “No, adenosine has to be administered.” Which isn’t very pleasant. I was warned that it’s not very nice. Basically, what happens is, you’re injected via a cannula. It’s basically adrenaline, which interrupts the electrical signal to your heart, so it actually stops your heart for a second, so you feel light-headed, you can feel your heart stop. And you can actually taste the medicine. It gives you a metallic taste, which they didn’t know, because nobody has ever told them [laughs]. But I talked all the way through it because that’s what I do when I’m nervous. And, luckily, it worked first time. They didn’t think it would.
Jeni refused to take beta-blockers initially but changed her mind later after discussions with her arrhythmia nurse.
Jeni refused to take beta-blockers initially but changed her mind later after discussions with her arrhythmia nurse.
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When I was actually at the hospital they did offer to give me beta-blockers then, the choices were I could go straight onto beta-blockers and wait to see the cardiologist on beta-blockers or I could do nothing, have nothing and just monitor them and if I have another bad attack, go to the hospital. I chose not to have beta-blockers because I don’t like taking drugs but, as the years progressed, as the months progressed, I’ve, you know, talking to the arrhythmia nurse, she said, “No, you need to go on beta-blockers because you’re having too many episodes, you’ve not been very well.” Because it does drain you. If you’re having a lot of episodes, a lot of small episodes, it does make you very tired. You’re constantly dizzy. You’re constantly out of breath because, basically, your heart is trying to beat too fast all the time.
Jeni pointed out the need for good communication between patients and health professionals.
Jeni pointed out the need for good communication between patients and health professionals.
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Talk to other people. If you have questions, ask. Ask your GP. Ask your consultant. Take a little, before you go for an appointment, have a little card with all your questions on because you might go in and suddenly go blank. Always take somebody with you because every time you go to the consultant they might tell you things and you might not be listening to it properly. You might hear it differently, whereas if you’ve got somebody else with you, they’ll actually hear what they’re saying as well. So they might actually understand a bit more and just be open and, you know, the more information you’ve got, the better informed and the healthier you can be.
Jeni talked about how frightening an AF attack can be for others.
Jeni talked about how frightening an AF attack can be for others.
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Don’t be scared. It must be must be quite frightening. I hadn’t realised because when I had my major attack, I hadn’t realised how scary it must be for people to witness it because the look on my colleagues’ faces when I was carted off in the ambulance with the oxygen mask on and the cannula in my arm and looking very white and pasty and, of course, at the time, they didn’t know what it was. They looked very scared and it wasn’t until I got back to work and one of my colleagues, who used to be a cardiac nurse, she came down and gave me a big hug and she said, “You do realise, Jen, that your whole body was shaking and you were grey.” And I said, “No.” Because I was just coping with the situation and to other people, it must have been quite frightening and (you need) to reassure them.
Jeni stressed the need to recognise the ‘human’ side of AF and to treat each person differently.
Jeni stressed the need to recognise the ‘human’ side of AF and to treat each person differently.
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I think sometimes when you go to see doctors or hospitals, especially if you’re in the hospital, you’re just another patient. You’re just another you’re just, not a body, but you’re another condition, another illness to them. You’re not actually a person and an individual. And I think sometimes in in any form of the NHS and with, you know, it can sometimes be forgotten that actually, inside there’s a human being with a personality and fears and questions and thoughts and aspirations. So it, I do feel that they need to look at the person and each person is different. Each person is going to deal with atrial fibrillation differently.
Keep people informed and tell them the reasons why you’re doing things and just remember that that person could be very scared and too scared to ask a question because they might not want to hear the answer and they might of thought the worst and it’s probably not the case.
