Interview HF27

Age at interview: 59

Age at diagnosis: 55

Brief Outline: May have silent heart disease. Heart bypass 1999. Heart failure diagnosed. 2002 angioplasty and stent.

Background: Registered nurse; married 2 children.

Says that getting her diagnosis was traumatic.

I remember the doctor, certainly sort of showing concerns about my heart which had never sort of happened before. My ECGs, I think, were abnormal and I had a very rapid pulse. So I was actually referred to a cardiologist who, who felt that I had a non-specific pneumonia causing myocarditis! [laughs] Then they treated me conservatively for a week and I was actually a bit better and ready to go home, when the cardiologist said. 'I'm just not sure about this. There's something not quite right. I think we need to do an angiogram'. So I just knew in my heart what was wrong, I think really. 

But after the angiogram I came back and cried, I don't know if it was a drug they gave me but I was just really tearful for the first time. And my husband was there which I wasn't expecting and I just really cried for about 5 minutes but then I was okay. And the doctors actually came to see me very briefly and said that the results were not good and that my left coronary artery was almost completely occluded right at the top, and that I needed surgery as soon as they could fit me in.  

I remember saying to them, 'Can't I go home for a while to wait?' And they said, 'No, you can't. You have to wait until we can do it.' And in fact the senior cardiologist came back that evening with the registrar, when my husband was in, and sort of sat down and explained everything to us [pause] which was fairly awful, really and fairly traumatic, because although I'd had a sneaky feeling what was wrong, you know it was very, it was... just a complete shock to realise that I actually needed major surgery. And that I couldn't go home and wait for it, like lots of people with heart disease can, that I was in fairly acute heart failure and was very ill.

Her 'silent' heart disease presents itself as serious vomiting and nausea.

Yes, once the nausea and vomiting stops I actually do feel quite a lot better. That just makes me feel so wretched that it is actually almost like, it's like status something. 'Status' is usually used in medicine when it's something that keeps on like 'status epilepsy', you keep on and on. And my consultant now and I call this 'status vomitus' because I actually don't stop. I don't sleep in between; it's just incessant. It's actually non-stop, it just wears me out, I'm exhausted.  

I mean now we actually know what does tend to stop it, it's much better. When I go into hospital I have intravenous infusions and they start giving me the drugs that help stop it straight away and so it does now stop between 2' and 3 days. Interestingly, we don't know whether this is a symptom of my cardiac disease or not but I think we think it is. Most people get angina, chest pain, I don't actually get chest pain, I've got silent heart disease and we think that the nausea and vomiting is a symptom of me either going into heart failure or of heart attacks. We're just not completely sure. I always get said to me, 'You're a very unusual presentation'. 
 

She was given a special stent which has worked well.

But I was told that I could have this stent fitted, and it was a new American stent (quite expensive with VAT on) but it's a drug-secreting stent which is different to others in that it does secrete this drug which would hopefully prevent it blocking. So it was arranged for me to have this stent, again on my birthday, or the day after my birthday'

...it was '1500 plus VAT, so fairly expensive. My husband now says it's worth flogging me because I'm worth a bit! [laughs] More than I was anyway.

Yes, so I had the stent put in I think about, I was actually quite ill for two or three days again and I had the stent put in about three days after the angiogram when I'd actually, I'd stopped vomiting by then and actually feeling much better.  

Again a scary time for us because you're not quite sure whether you know they're going to proceed, if the stent's going to work or whether they're actually going to need to proceed with bypass surgery. So I remember going down for it thinking, oh I hope this works, I don't really want to be opened up again, to go through that again. But luckily it was fine, it was put in and in a good place, evidently, and all seemed to be working well. And I was just in, I think, for a couple of days after that and then home to recover.  

She felt she needed some follow-up and rehabilitation to help her manage her heart failure at home.

I think as part of the follow-up programme someone perhaps that could come and see you at home and just see how you're managing and just sort of how it's affecting your daily life.

You know, not just the physical but the traumatic effect it's had on you and what it's actually done to your confidence, because that's the big thing. It does just knock your confidence for six... you know, in just doing simple, everyday things really.  

I had a really bad experience about, it was a couple of months after, it may have been longer, a few months after I'd had it done. One Saturday morning my husband was out and I was feeling really well and I am quite hard working when I get going, and I'd decided to do something like clean the car, do the windows and do something else. And at lunchtime I felt terrible, my heart, my pulse rate had gone up mad and I was just feeling really ill and didn't quite know what to do really. It was really sort of panicky and in fact we did go, we got an emergency appointment with the GP, who in fact, wasn't my regular GP who actually just sort of sent me home really and told me to stop one drug. In fact on reflection I should have gone and had an ECG at the hospital, I think.  

But it would have been nice to have somebody I could have, that perhaps knew a bit more about heart disease that I could have called. I mean what I did have as support because there wasn't a rehab programme in my area, was I knew there were 2 local ones and I was given the phone number of one of them and I did actually ring that number twice. The first time about, I was still really worried because I was painkillers after 6 weeks and as I said before, I don't like taking tablets so I was really worried that I was getting hooked on these, but I mean that was great because I was greatly reassured that it is still going to be painful for some people, you know and you need to take them for as long as you're getting the pain so don't worry, continue to take them.  

And the other thing I rang up about is when I did start going to a gym was to ask about my pulse rate and how high could it go? And they were really good because they actually got hold of the person that was able to work that out for me, and she rang me back and said you know you can go between these levels. So it was there, distantly something by the phone. But it would be quite nice to have something in the area that you know was much more easily accessible, that you could either get to easily by bus or car or that they would come out. I think that would make quite a difference to the healing.
 

She describes the effect of a nurse's negative body language.

Certainly some of the care was excellent. Certainly before surgery, while I was waiting, that was very good. I actually found the care on the after-surgery was slightly different because I guess, unfortunately for the nurses and perhaps unfortunately for me, I'd actually been made very aware in my work of person-centred caring with a group of people I work with. We've been trying to sort of change the way we care in actually working on a very, very individual basis with people and trying to sort of see each person as an individual and recognising what was really important for them. 

I can't criticise the actual high-tech, saving-my-life-care because that's what happened. I think it was my sort of spiritual well-being that probably wasn't catered for very well. And I don't necessarily mean that in a godly spiritual way, although that is also quite important to me but it was also about things that actually mattered to me. And it was just about the way [pause] people looking after me spoke across the ward, like I heard a nurse shout across the ward one day to somebody, 'Have you had your bowels open today?' And I thought that had actually stopped and my husband was there and he said, 'Oh, do they still do that these days?' And I said 'well obviously in some areas, yes!'

And certainly I was aware of people who didn't want to be at work, their body language would sort of say, 'well I'm here for the night but perhaps I don't want to be, so don't ask me for a commode.' And I think the impact that has on you when you're actually feeling very ill, out of control, hopeless is just very pertinent you know. It wasn't therapeutic; it didn't help my healing at all. It just made me feel desolate at times and I can almost sort of, well I definitely know that at night I would be looking to see who was coming on duty. You know it just made a difference. There was one night nurse who was just so therapeutic, so busy but so therapeutic that when I saw her, you know my heart just lifted really and I would think great. And at other times, you know I could think, 'Oh no, I must try not to ask tonight.'

Her keep fit class has motivated her and improved her well-being.

...because when the 6 months come up, I'm sort of almost waiting for it to happen. You know I'm thinking is it tonight, it's got to be, you know we've gone over. But that's actually gone at the moment because I've passed the 6 months, and because I've actually lost some weight as well, I've lost two stone in weight now, you know which is part of it. I just feel much more motivated and I can work out without getting breathless, I can do a workout at the keep fit class. I keep going as long as other people, you know if not longer, I'm very determined when I get onto it!  I'm very competitive when I'm on a keep fit floor, I can tell you!  

I actually felt I was probably doing too much because I'm only supposed to let my pulse go up so far, not above something - which I won't mention. But I actually checked it out with the cardiologist and my consultant and they said, 'No, you're looking really well, you do it'. And it's very much about my well-being; you know what makes me feel good. And I've said to my husband, you know if something happens when I'm doing my keep fit, it would be awful for the class, but at least you'll know I was motivated, happy, active and feeling very good about myself!  Which for me is very important. 

Prefers not to be away from home in case she's taken ill.

It's actually made a great difference to our travelling, the illness. We were never great at going, we've never been one for going on holiday going abroad because we have birds and dogs and fish and, until recently, rabbits. When we did go our sons actually looked after them but now they've both moved away, it's much more difficult. So we'd never go away for more than a week in the past and I suppose over the last 4 years never more than a couple of days or even less than that'

So it's actually made us very worried about being away and even going to conferences or courses, I actually went on a conference once and actually became ill there and had to be brought home. So now I can't go out to a conference where you have to stay overnight. My mentor is now, one of great mentors in nursing older people, is now Professor of Nursing in Northern Ireland and asks me over frequently, to perhaps share my experiences of person-centred caring and you know, individual care for people, and I can't go because I just can't take the risk of being away.  

Being away from home, being away from my husband, being away from my local GP, being away from local consultants and from my local hospital - I'm just, we're just... my husband possibly more than me, much too scared! We've actually talked about moving house, we'd actually like to move down towards the South Coast but it's not just moving away from our family, it's moving away from all our support links!  

Describes how she took a few months to recover from a setback.

I actually took a long time to get over this.  I think emotionally I was really knocked for six at this setback and for the next three or four months really I functioned certainly, I was off sick from work but I did housework, I went shopping you know, as usual. But I'd certainly lost something, I'd certainly lost my umph, which we couldn't even find under the settee, we looked. My motivation and you know, I think I was just a bit down really and you know, just wondered if it is worth carrying on really like this. And I sort of sat and ate and fiddled around and gained weight and felt generally miserable. But thankfully, after Christmas I actually found my umph again somewhere, it sort of came back and my motivation came back but I actually felt well again, I think. I actually felt better than I'd probably felt for the last 3 years, which is very interesting. 

 

Has organized her possessions and planned her funeral service.

Yes, I mean I guess you know, certainly having all this has made me much more aware of you know, that perhaps I'm at greater risk of dying than perhaps other people that I know. And really I don't have any great fear of dying. I am a Christian so, and it's a fairly simple Christian belief that I have but it's very important; I am a practicing Christian. But after I'd had surgery one of the things that I needed to do certainly was to, it made me want to tidy my house up. I felt that okay, this might happen to me, and I need to make life as easy for my husband as I could. I don't want all my old things, like my wedding dress hanging around and him thinking what am I going to do with that or what am I going to do with all those things in the cupboard? So... I didn't do everything at once but I've certainly over the past two years, I've actually gone through the house and got rid of lots of things and put things in order. And said, because I actually manage most things in the house, finances, you know I know where the birth certificates are, the marriage certificate. So it's made me actually put everything in order, much more order, so that he can find them. And we've actually done our will as well, which we hadn't done.  

But also I was very keen that my service, when I actually die, that my funeral service would be just how I wanted it, really and I've made that easy for him because I knew he would be dithering and thinking shall I? What would she want? So I've actually had my service arranged, soon after I had surgery really. I've changed it a few times because I hear a new piece of music and I think, you know that would be really good, I'll have that as well! [laughs] And I've actually warned people that it could take all day to bury me because I do love hymns and I do love music so it's going to be a long one! So don't book half a day; you need the whole day!