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Freda

Age at interview: 70
Age at diagnosis: 68
Brief Outline: Freda first noticed symptoms lying in bed at night. She had to visit her GP a number of times before she was referred to a cardiologist. Her AF symptoms got worse after a long chest infection. Freda takes aspirin, plus a statin for high cholesterol.
Background: Freda is a retired administrator and married with two grown-up children. Ethnic background/nationality: Japanese.

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Freda noticed that she was having palpitations when she was lying in bed at night. She saw her GP four times, and he told her that everyone gets palpitations at times - she found it frustrating that he did not take her symptoms seriously.  She then saw another GP who conducted some blood and urine tests, to rule out any underlying problems. She was then referred to a cardiologist and wore a 24 hour heart rate monitor, but her heart was not in AF at that time. She was prescribed 75mg of aspirin daily. Her palpitations usually lasted a few minutes but could last up to one hour, which Freda found tiring, and they could interfere with her daily life. Looking back, when she was younger Freda remembers her mother having palpitations and feeling dizzy. Freda had a chest infection for six months, and noticed that the nature of her palpitations changed, so that they happened in the daytime too, plus she felt light-headed. She also noticed that occasionally her heart rate could get as low as 30 beats per minute. Once when she had an episode she went to the hospital, but nothing showed up in tests and she was sent home. 

Freda kept a food diary for a year, to see if any foods triggered her AF. She could not notice any patterns, but did notice that tiredness and a lack of sleep can trigger an episode of AF. However, sometimes after an episode she cannot sleep even though she is tired. She says that she has never had an AF episode while on holiday. Freda jogs once a week and walks daily, and sometimes finds that she gets palpitations as she starts off, but these pass. She carries a note with her saying that she has AF and takes aspirin, plus with her husband’s contact details on, in case she ever becomes unwell while she is out on her own. She says that she experiences AF on a daily basis, to varying degrees. She feels that it happens mostly when her mind is blank and she is not involved in doing anything. Freda also takes a statin for cholesterol. She tried simvastatin and atorvastatin, but these gave her acne. She now takes rosuvastatin, and wonders whether this medication affects her AF, as she is aware that statins can affect muscles. She asked a consultant but he dismissed that there could be a link. She also asked her cardiologist whether her AF would get worse in time, but says that she did not receive a definite answer. Freda was been discharged from the cardiologist, but was unhappy with this and wanted her condition to be monitored. She feels that the routine cardiologist dismissed her condition and kept her on aspirin, when perhaps other options could have been explored. On her request, she was referred to an AF specialist at her local hospital, and has found this to be a ‘defining moment.’ She says that the AF specialist has explained her condition and prognosis in detail, and given her a 48 hour monitor and echo-cardiograph. 

Freda has joined the Atrial Fibrillation Association and finds it useful to read about other people’s experiences of AF, and read the information leaflets that are provided. She also looks up information online, and reads forum posts, but does not post herself. She believes that patients should research their conditions themselves, so that they are informed when they are making decisions about their care. She says that she prefers not to take too many medications due to side effects. 

Freda is pleased with the care she has received. She feels it is important for doctors to put patients at ease. She admits to sometimes not asking some of the questions she has, because she feels restrained during the short appointment and not able to ask ‘silly’ questions. She thinks that people are not aware enough of AF and that awareness should be raised. She says that it is the stroke risk which is more damaging than the symptoms, although these can also be unpleasant.  Freda urges people with AF to consider if anything in their lifestyle could be triggering their AF. 

Interview held 27.1.12
 

Freda suspects that she might have inherited AF from her mother.

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I knew I was quite healthy, so I was quite puzzled why I had this sudden palpitation. Then I suddenly remembered that when I was a teenager I was about fifteen, sixteen, when I came home my mother would be in the sitting (room) and doing needlework or something like that, then I would chat to her and various things that happened at school and she would suddenly say, “Oh, I’ve got my heartbeating. I wonder what this is.” You know, I clearly remember that moment. Of course, I since I’ve got married I had been away from my mother. I have never noted that she complained of heartbeat but she complained of funny head. She didn’t say it was a headache but light hearted head and that she occasionally, when I visited her, I mean to say, in recent years, that she complained about, “Today, it’s my bad day. I’ve got funny head. You know, giddy and I can’t really keep standing up.” And things like that and precisely, this that symptom I began to have together with this heartbeat after two years or so, 2000, later 2010, I began to have this symptom. I had no idea that it was, I have no idea that this is anything to do with my heartbeat or the condition of my heart but that’s one query I have but the GP, GPs are not able to help me understand what’s happening to my body. 

Perhaps I have inherited something of my mother, which obviously, started in her in her late life or middle to later late life. By the way my mother survived to live to age of 102. So she was, in a way, healthy. 
 

Freda is realistic about the future and believes in making the most of the present.

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I am aware, one of these days I might just suddenly, you know, fall down and faint or there’s a chance like that I might I might be found dead in bed as well, yeah. Yes, I am aware of that. So every time, you know, my life is very much, I’m seventy now. Lots of people die at fifty eight and sixty and mid-sixties and seventies and so I am facing sort of sudden, you know, the end of my life on a daily basis or that if I, well, for instance, I try not to do the washing up in the sink, you know, overnight or something like that. So that the, you know, try and get rid of the dirty washings and paper works are nice and tidy and things like that. You know, they just in case I drop dead next moment you know, people are not troubled with anything of my possessions or something I didn’t, I hadn’t done or etcetera etcetera. So, yes, in a way, I have been like that. I, you know, it affects you in all sorts of ways. In a way, it’s good. Makes you carry on going, yeah. Makes your life more alert, yes.

Yes, as I mentioned a little while ago, I could be drop dead any time. So I try and make the most of the time I have, yes. I’m not afraid of dying because, you know, we all die eventually, so I [laughs] it’s a destiny we have to face up to isn’t it, yes, to go. We make the most, must make the most of what we have now, yeah.
 

Freda experienced skin problems after taking simvastatin to control her cholesterol.

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I am on statin. I take rosuvastatin, five milligram for to control my cholesterol level, because although I we have a very good diet but I my make-up, genetic make-up is such that is incapable of controlling, you know, eliminating extra fatty acids, so, therefore, I was told to take this. Before I came to a super-statin, I was given a… the simvastatin, ten milligram or something like that and then, which I came out with spots on my face, with acne, you know, acne like spots, which did not disappear for months, very hard red spots which hurt, for months. My GP said, “Oh, it’s nothing to worry about.” But I knew it was a reaction to the simvastatin. I demanded that he gave me a different kind of a statin. He gave me atorvastatin, again I came up with spots. I came up with the spots on my face. I came up with spots on my buttocks. I had huge acne on my buttocks and the doctor gave me this rosuvastatin. 

Then I deliberately didn’t take rosuvastatin until this acne disappeared because I wanted to give the rosuvastatin a clear, you know, chance to react on me and I didn’t have any spots but a tiny, tiny acne appeared on my face but I decided I’d better carry on with this, see how I get on. Fortunately, it seems to me that there wasn’t any further acne to come up and nowhere else on my body. So I continued to take this rosuvastatin. I’m on this for about four years or so. 

On reading and studying that the, on, not sort of, you know, I what you can get from the internet, the statin is famously notorious for affecting the muscles like legs etcetera etcetera.
 

Despite keeping a food diary, Freda has not found anything that triggers her palpitations.

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I don’t get unduly worried in the middle of the night when I get I get woken up with the palpitation, which is does happen. Sometimes it goes on for a long, long time. Sometimes it’s just a minute or so. It makes me wonder why the behaviour of my palpitation differs like that, and I decided to take the food diary it’s about a year ago and they, what I have for breakfast, when I have my breakfast, what I had for evening meal, what I drank for in between for my refreshments etcetera, etcetera. To start with I decided to cut down on any kind of caffeinated, drinks with the caffeine such as tea and coffee. When I’m desperate for coffee I do have, I allow myself one decaffeinated coffee a day but on holiday, it’s, where decaffeinated coffee is not available, I end up doing, drinking ordinary coffee but it doesn’t seem to affect unduly. That’s what I noticed. 

With regard to food diary, I have not come across any particular vegetable, any particular dish or anything like that appears to affect, not that I have any sort of varied diet. 

Over a year of food diary, I have no nothing to tell myself that I would be careful with this. Neither on caffeinated drinks either but I have noticed that the lack of sleep, lack of exercise, exercises, suddenly a lack of exercise, it doesn’t give me a very good sleep. I tend to wake up during the night. So perhaps disturbed sleep, it may be something to do with a lack of lack of exercise. 
 

Freda believes that public education is the key to raising awareness of AF.

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It’s a public awareness, public education and public awareness. …It’s that the symptom is not the symptom of irregular heartbeat isn’t the problem. That the irregular heartbeat that may cause you inside, that is the problem isn’t it? That’s the core message isn’t it? That has to be sent out. It can only be public education, and I think five a day, five veg and fruit a day, it’s you know, it’s a… you see that ubiquitous and then it’s in everybody’s head I think. I don’t know whether the government would like to do a similar things, check your pulse, you know, and amazingly some people don’t know how to make, how to take your pulse do they? Some people don’t know where to go for, that’s what I’ve found.
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