Mary

Age at interview: 84

Age at diagnosis: 84

Brief Outline:

Mary has had palpitations for many years caused by a hiatus hernia. A recent episode lasting 5 hours led to hospitalisation. Against her consultant’s wishes, she decided not to have cardioversion. She is currently taking warfarin and beta-blockers.

Background:

Mary is a retired teacher. She is widowed with one adult child. Ethnic background/nationality: White European (Italian).

More about me...

Mary has had palpitations since her forties and was told these were caused by a hiatus hernia. Palpitations would come on suddenly and her heart would ‘give a jump’ in places such as the supermarket and on her way to the airport. Advised not to have an operation to correct her hernia, she decided to ‘just soldier on’, getting rid of occasional palpitations  by standing on her head. In recent years, she was prescribed omeprazole tablets for reflux and the palpitations stopped. 

Six months ago, however, after eating a few biscuits at 3am to help her sleep, Mary developed palpitations which ‘went on and on and on’. At 7am she rang NHS Direct and was taken to hospital where AF was diagnosed. She remembers being given an injection to stop the palpitations and was advised to have a cardioversion. She declined and was prescribed warfarin and beta-blockers [bisoprolol]. 

Mary describes taking warfarin as her ‘pet hate’ and would prefer instead to take aspirin. Although she recognises that warfarin may help avoid a stroke, she wonders whether she is at increased risk because she has AF. She wishes she knew more. Mary has never attended a warfarin clinic as her local surgery organises regular blood tests to measure her INR levels (the time it takes for blood to clot) and to adjust the dosage of warfarin as necessary. She carries an alert card which she has to show to the chemist when buying products over the counter. She has had to stop taking vitamins such as zinc and ginkgo biloba, and found warfarin incompatible with antibiotics she took for an infection. The prospect of falling and cutting herself while taking warfarin concerns her because of the potential for bleeding. 

As well as her dislike for warfarin, Mary has experienced side effects since taking beta-blockers including tiredness, dizzy spells, depression, and a ‘patch of psoriasis on my scalp’. She is annoyed that she has had little say in her treatment and would ‘really like to be in charge of my own body’. Care-wise, Mary is unimpressed: ‘I can’t say I’ve seen that much care’. She describes how the consultant pressured her to have a cardioversion immediately and ‘lost interest when I wasn’t cooperating’ warning her that she would have to take more tablets. She felt she was given no explanation about the surgical procedure, knowing only that it involved ‘stopping her heart’. Mary has had no follow-up since her admission to hospital and feels she’s in ‘no man’s land’ in terms of who she should turn to for advice. She plans to see her GP and ask for a referral to a cardiologist ‘to have a good examination and find out more about AF’. She has the impression that she is overlooked because she is old. 

Mary advises others diagnosed with AF to reduce stress but otherwise not change their lifestyle. She describes AF as ‘just a nuisance’ rather than a disease to worry about. A regular traveller to Italy, she is concerned about how her diagnosis will affect her travel insurance. Although she has had no further symptoms, Mary has been warned to call an ambulance in the event of another episode of AF. 

Mary, who was reluctantly taking warfarin, wondered whether her risk of stroke warranted taking medication.

I don’t know why they put me on warfarin. I know that I don’t I didn’t think that atrial fibrillation and warfarin, I mean warfarin won’t do anything for atrial fibrillation I don’t think. It’s more for avoid a stroke obviously, but am I likely to get a stroke because I’ve got atrial fibrillation and I haven’t taken it for a long time anyway. I haven’t had any more instances or. I just wish I knew more.

Describing warfarin as her ‘pet hate’, Mary talked about the incompatibility of warfarin with some prescription and over-the-counter medications.

I’ve had this cough lately. And I was coughing all night. I was going, I was sick with it and I wasn’t I couldn’t take cough linctus because it wasn’t. I asked the chemist. I asked the doctor, “No, no just a simple glycerine and lemon. You cannot have anything stronger.” But, when I started being sick with this cough, the doctor gave me a linctus with codeine in it and that has helped a lot that linctus but this, you know, it’s, you’re supposed to show it to the chemist whenever you buy anything, any drugs or medicine. So it’s very or I find it’s it ties me down a bit.

It ties you down. In what way?

Well, I can’t choose what drugs to have. I mean I used to take zinc. I used to take ginkgo biloba for memory, all sorts of things now I can’t.

And I’ve got to give up all those, all my vitamins. I suppose I could go through them with the doctor to see what I can take and what I can’t but it’s so time consuming I just get, they say, “Don’t take any more. That’s it.”

Mary, a woman in her eighties, hinted at ageism.

I can’t say that care-wise, I’ve seen much care. Really. It just I, you know, this impression [coughs] and I think when you are old, you say, you know, “Oh, well. She is old and she’ll.” I get that impression sometimes.

What gives you that impression?

Well, there hasn’t been any follow-up or anything. No suggestion of seeing a cardiologist again. I mean I saw one for a few minutes, one in May my GP is sort of, if I go with something, you know, tries to but I mean I don’t often go to the GP either unless it’s. I mean he was very good. A couple of weeks ago I was feeling dizzy and I started this cough again. Actually, I was I was bringing up all the meals with coughing. So I just said, could I speak to him on the phone, when his when they put him on he said, “I’m I’ll come round and see you and chest, and check your chest again.” I was quite grateful, yeah, but I mean of course, they’re very busy people as well. No, I no, I’ve not really been impressed with the with the treatment.

Mary remembered being put on warfarin without discussing alternatives.

No, I don’t like it. I feel like I, I wish other, I say they didn’t give me a choice but maybe I wasn’t, I was sort of semi-conscious and didn’t know what I was doing but I have a feeling they just said, “We’ll put you on warfarin.” I don’t think there was any, “Would you like to go on warfarin or not or there is an alternative?” No, I didn’t take didn’t get that at all. I thought that annoys me because I really would like to be in charge of my own body.

Mary’s AF was diagnosed after she was taken to hospital with palpitations.

So anyway, last May, June I couldn’t sleep one night. I got up and must have eaten a few biscuits thinking that they might send me to sleep and when I got back to bed about three o’clock in the morning, I had these palpitations started and they went on and on and on. I couldn’t get rid of it. I didn’t stand on my head mind you, but I’ve given up lately. So seven o’clock in the morning, I still had it. I was a bit fed up with it and I thought, oh, I should just, usually I ignore when I have these palpitations but it didn’t last that long. So I rang up NHS Direct and I talked to the nurse. “Right,” She said, “I’m sending an ambulance round.” And I couldn’t believe it. I said, “Is it necessary?” “I’m sending an ambulance.” So seemed that my blood pressure was high then took my, they must have given me an ECG, I don’t know, by these two chaps and they said, “We’re taking you in.” And I thought, “This is, you know.” I mean I’ve had these palpitations so many times and survived, why do they? All this fuss. Took me in. Straight in examination room. I was absolutely flabbergasted because I don’t, didn’t feel like, they just get this sort of heart beating fast. So they said it was atrial fibrillation. That’s when I was diagnosed.