Anne

Age at interview: 73

Brief Outline:

Anne was diagnosed with cardiomyopathy and heart failure 2½ years ago after experiencing breathlessness on exertion. She has a biventricular pacemaker and receives a weekly automated telephone call from a specialist nurse to check how she is.

Background:

Anne is married with adult children. She is a retired sick children’s nurse. Ethnic background: White British.

More about me...

Anne was shocked to be diagnosed with cardiomyopathy and stage 3 heart failure two and a half years ago after experiencing breathlessness when out walking or going upstairs. At first both she and her GP thought it was just lack of fitness and she was advised to increase her activity levels, but after having some tests she was referred to a cardiologist. Anne was depressed by her diagnosis at first and took an anti-depressant until a few weeks ago and had some counselling to help her come to terms with having heart failure. 

Anne was prescribed medicines for her heart but had a bad reaction to an ACE inhibitor, so now has to avoid that type of medicine. She currently takes bisoprolol and losartan each morning. After speaking to someone from the Cardiomyopathy Association, she asked her consultant if she could have a biventricular pacemaker, and he agreed as she fitted the criteria. She has felt much better since it was fitted, and it has been adjusted once.

Anne weighs herself every morning. Her pacemaker is checked twice a year, she has a check-up with her consultant once a year and can see a heart nurse in between if she has any problems. She rarely, if ever, sees her GP about her heart but has a blood test twice a year to check her kidney function and general health. For the past six months she has received a weekly automated telephone call with a recorded message from a hospital nurse asking whether her ankles are any more swollen, she is more breathless or has put on weight, and instructing her to call a particular phone number if she has any problems. She would have appreciated the reassurance provided by these frequent phone calls when she was first diagnosed, but now that her condition is relatively stable she finds the calls intrusive as they serve to remind her that she has heart failure. If she forgets about the call and is out when it happens, she is phoned in person by the nurse later on.

Because of her heart condition Anne tires easily and can no longer do everything that she used to do. If she does a lot one day she has to rest the next. She is a keen gardener and feels sad to have had to give up her allotment because of her condition. She has been advised to exercise but she doesn’t enjoy walking for walking’s sake and gets some exercise through her gardening. She grows her own vegetables and considers her diet to be relatively healthy.

Anne attended cardiac rehabilitation sessions for a while following her diagnosis but she stopped going because she had expected to receive education about her condition alongside the exercise sessions, but this didn’t happen. She finds information for herself about her condition and likes to keep up to date with developments. She also requests copies of all her test results for her records. She is keen to get to know other people with similar problems and has started up a local support group for people with cardiomyopathy. She has a good relationship with her consultant and is happy with her care.

Anne stopped taking an ACE inhibitor because of a cough and was switched to various other medicines in turn, each of which gave her unacceptable side effects.

No problem with beta blockers but it’s the ACE inhibitors. They cause me to cough at night. So that was changed to an ARB, and I can’t remember what the initials stand for.

Angiotensin Resister Blocker, or something like that.

Blocker, yes, yes, yes. That’s right. And then I was put on to spironolactone or eplerenone and both of them gave me absolute disaster with my gut. I couldn’t go out anywhere without rushing to the loo and so I can’t take either of those drugs which are very useful for extending life apparently. So I don’t take those and I can’t take. When I was changed from the ACE inhibitor my consultant wanted me to take a particular dose of candesartan. So I started taking it and with the nurses I was increasing it and it just made me unbelievably breathless. I couldn’t walk half way down the garden. It was dreadful. So I, I said, ‘I’m not, I’m not going to stick with it. I can’t. It’s just awful’. So they put me on to losartan and I had the same effect, so I am on a tiny, tiny little dose of losartan, although I don’t think my consultant is very pleased with it , the nurses say, ‘Well, you know, everybody is different and that’s all you probably need.’ I’ve never had high blood pressure so, you know, it probably is all I need. So, but it keeps me well.

Anne describes the automated weekly phone call she receives to check up on her heart failure signs and symptoms.

He phones on the dot of 10:00 every Tuesday and he says, “Is that [name]?”—‘cos that’s the way I’m known. (Oh dear, sorry.)  “Is that [name]? If I am speaking to [name] please press one. Hello [name], this is the Heart Clinic calling. I am phoning to find out how you are getting on today.” And then the three questions, you know: “Are you more breathless? If you are not more breathless press one; Are your ankles swollen?’ If your ankles are not more swollen press one”; and if you have put on weight, “If you’ve not put on weight press one”. And then it’s, “Thank you for telling us how you are today. I will phone you again next week. Good bye.” Oh, and “If you have any troubles”, you know, “any difficulties meanwhile phone….” And he gives you a phone number to contact him.

Okay, so it’s just a recorded voice?

Yes, yes and it is picked up on, because once or twice I’ve completely forgotten about it and gone out and missed the call and forgotten about it and not checked up on my recorded missed phone calls, and then later on or the next day, early, I get a call from the nurses saying, “We didn’t pick up the messages that…”, you know, “From the recorded voice. Are you alright?” So it is, it’s efficient. 

Anne was unhappy after her GP of many years had inaccurately recorded the duration of symptoms she presented to her and didn’t send her for tests.

I mean we’d been with our, the GP that I had then for over 20 years, and when she referred me she said things in the referral letter that were covering her tracks. And I was pretty appalled at that, so I wrote her a letter and put in what actually had happened. And I think, you know, the surgery were quite worried because she is a person… I mean she’s a very, very good GP. She’s absolutely super. She’s been absolutely marvellous to us and, but I thought, well, but she has in the past, she had in the past before this happened to me she has actually said that she’s rubbish at diagnosing. And so I thought, well she, she acknowledges the fact that she isn’t good. But when she put in this letter that I’d had breathlessness for a few months, when it was over a year, because I mean I didn’t go to her right at the beginning, you know, I thought, ‘Oh’, you know, ‘I’m unfit; I must get fitter’, as you do. You don’t rush, rush to GPs, and I said to her, ‘Why didn’t you send me for more tests?’ And her reply was, ‘You didn’t ask for them’. And I said, ‘But who’s the GP?’ No I didn’t. I said, ‘But I’m not the GP’ [sigh] I couldn’t believe it for an answer. 

Anne weighs herself daily but doesn’t keep records except on clinic days when she tells the nurse her weight because she doesn’t want to be weighed again.

I weigh myself every day, and if I have an appointment with the cardiac nurse, ‘Oh we’ll weigh you.’ I said, ‘Well I’ve weighed myself today. I’m not going on the scales again.’ And I think to be treated like that is just awful. They, you know, that. So I tell them what I weigh, which my silly scales only do pounds, and that, you know, they have to convert it into kilos. And I think that, for goodness sake I’m an adult , I’m not going to, I’m not going to fiddle the books. What’s the point? And they should take. So I don’t go on their scales, which upsets them a bit.

Oh so you don’t ever go on their scales at the hospital?

No, no because I weigh myself at home. And that is a weight which I do before I get dressed in the morning. So it’s a very good weight. Whereas every time I go and see them I’m wearing something different. So their weight is all over the place and not really a good guide.

You don’t get fed up with just having to do that as part of your routine?

No. I mean I go into the front bedroom, draw the blinds, go on the scales and that’s it. I’ve stopped writing it down. I wrote it down at one time and that was a, that was a hassle because I could never find my pen [ha]. But no, there is no point writing it down because nobody is going to look at it.

Right. So when you go and see the nurse on the occasions that you do, they don’t want to see all your records?

No they’ve never asked. They’ve never asked, and I’ve got pages of the stuff and I think, ‘Well it’s a waste of paper’.

Yeah. And is it relatively stable?

[mmm] Yeah, yeah. 

Although a comfort at first, after 6 months Anne is finding her weekly automated telephone calls from a nurse a bit tedious.

But once a week I get a phone call from the hospital asking me how I am today. Are my ankles more swollen? Am I more breathless? And have I put on weight? And it’s all, you press a, ‘Press number one if these results are okay’, and then I get, ‘Thank you for telling us how you are today. Goodbye and I will phone you next week.’ 

I’m finding it a bit tedious and it is reminding me that there is a problem. So I am not sure how long I want to continue with it but it’s, it’s a real. I think when I was first diagnosed it would have been a real comfort to have that, but I’ve had it probably now, it’s, it was under a pilot scheme. I suppose I’ve had it for about 6 months now.