Interview HF35

Age at interview: 53

Age at diagnosis: 49

Brief Outline: Felt breathless 1999. Heart failure diagnosed in 2000.

Background: Retail manager; married with 2 children.

She was told she had heart failure by a nurse in hospital.

I was feeling confused I still didn't really know what was wrong with me. Nobody had told me! I was still on my own tablets from the GP, nobody had given any other tablets.

I was in hospital for a week in which time I had blood tests every day, I was taken off the heart monitor, but still nobody said to me what, you know... I didn't know what was wrong with me. "What was wrong with me?" I asked the nurses and they said, 'Well, you've got heart failure'...  Heart failure? Was I going to have an operation? What was, you know, I didn't know what was going on.  

I badgered everyone. I wanted to go home, I didn't like being in there because I felt no one was doing anything. Then a heart failure nurse came and saw me and explained to me what was going on. I felt easier and she said I could go home but I had to take beta-blockers. I was given beta blockers before I went and I had my blood pressure taken and I seemed to be okay. 

He didn't tell me why he put me on the water tablets, he just seemed to - when he saw me - he seemed to be really shocked as if he didn't know how I got into that state, and he said, 'Go straight home, go to bed. Take these tablets and I'll phone you and see how you are'. Looking back on it now, I wonder why he didn't send me to hospital. I wish he had of done, I wanted to go to hospital.

When I walked along to the doctors that day I thought I'm going to be in hospital by this afternoon and I wasn't and wished I was. I wanted to be in hospital. I wanted someone to do something for me, and even when I saw other doctors after that, I thought, and I was feeling a lot better, and I went to see a house surgeon I think it is or the one under the consultant, and he said to me, 'How are you getting on?' And I said, 'Oh, I'm fine,  I'm really getting on well,' and he said, 'Yes you look well,' and I said, 'Well can I come off the tablets now?' And he said, 'No.'  And I said, 'Why not?' And he said, 'Well you'll never come off the tablets'.  

I thought once I got better I wouldn't have to take tablets anymore. I never realised I'd have to take all this amount of tablets for the rest of my life. That's another thing that shocked me. 

When she was first told she had heart failure she knew nothing about it and was frightened.

When they first told me, 'You've got heart failure' I thought, 'That's it, I'm going to die!' And I said to my own GP, 'I've got heart failure they told me at the hospital,' and he said, 'Yes,' and I said, 'Will I die?' And he said, 'Not necessarily, no of course you won't.'  I said, 'Will I have to have an operation?' And he said, 'That is the worse thing that could happen, but you will recover'.  But I thought heart failure meant your heart had failed and you were going to die. I've never, never come across heart failure before. On the television, people have heart failure and they die, I didn't want to die. 

She hasn't let heart failure affect her life and she carries on as normal.

But I'm determined that having heart failure is not going to affect my life. I enjoy my work, I work full-time and I'm not going to stop working. I'm never going to sit down and say, 'I've got heart failure. I can't do this, I can't do that.' So I've made up my mind, 'Yeah get on with it, get on with your life do what you was going to do anyway!' And really and truly although I'm not quite so active and heat does affect me, I would say I'm back to how I was before, thanks to the medicines and thanks to a good doctor, and also the heart failure nurses. They are brilliant. Any problems I just phone them up. They're so..well they're like you're friends! They don't, I don't feel as if they're someone I can't talk to, they are someone I can talk to. Although the consultant is very nice, and I really like him, it's still the nurses who I think are the best, they really are.

I think taking the tablets is not a worry to me, because I've got it under control. At first I didn't think I'd have to take them all the time, I thought once I got better I could come off them. But once that was explained to me, well what else can you do? It saved my life, so of course I don't mind taking them.  

I think the only thing, I don't like being put in the bracket 'Oh she's got a bad heart, let's let her do, you know, let's treat her differently'. Don't treat me differently, there's nothing wrong with me!  I've got a bad heart but I'm living with it. Don't say, 'Oh don't pick that up, don't do this, don't do that'. I can do what ever I want to, a bit slower perhaps, but I can still do it and I will do it. I can still do my work, and it's not affected me and I won't let it affect me. I don't think about it. I just carry on as normal.

Her consultant thinks she contracted a virus that attacked her heart.

The most likely thing is getting a virus which attacked my heart when I was abroad. I could have had it before I went, and it got worse when I was abroad, but I've got no history of heart disease in the family, I don't smoke, so they just think it was a virus and I was just unlucky.

When you were abroad were you aware of being ill or having a virus?

As I say, when I was in Hong Kong a couple of people got coughs and colds, and my husband got a cold. I just seemed to start coughing and didn't really take a lot of notice, everybody gets coughs and colds. It's a funny atmosphere over there, it's very very hot, humid, but air conditioning everywhere and you go from the heat to the cold, and I just thought it was just a bug I'd picked up. But they said it had attacked my heart.

Who said that?  Can you tell me a bit about that sort of diagnosis as it were?

I've asked my consultant at the hospital why I got this and he said, the only thing, it's a mystery, the only thing that he can think is that the virus I caught when I was abroad. Nobody else knows. I was asked to have, I don't know what it's called but they put a camera into your vein, to look at my heart, but I was really nervous about having it done, and I said, 'Would it benefit me at all?' My consultant said, 'No, it won't benefit you. And if you really are nervous about having it done we won't do it'. So I didn't have to have that. I've had a scan on my heart, and I'm really pleased to say the last scan, my heart's nearly back to normal size, because what I've got is an enlarged heart, and it wasn't pumping things around my body and that's why I got all swollen up.
 

She describes digoxin as a 'poison' that improves her heart beat.

That was 3 or 4 years ago now and I'm now on 36 mg of beta-blockers a day, plus the blood pressure tablets, only two water tablets, and I'm feeling a lot better. I have had one or two scares where my heart went out of rhythm and I had to have a special treatment. 

It's like you see on the telly and it's quite scary, where they shock you back alive again! [laughs]. And I was a bit scared but I had that done and it did, it made my heart go back to normal, and touch wood I haven't had no problems. I'm also on another drug and that makes me laugh because it's made out of foxgloves, but it's a poison but it makes your heart beat better! [smiles]. My consultant said he couldn't understand why I needed to take that because the electric shock treatment should have done it, but it seems to work with me so I'm pleased. 
 

Felt ill at first with her beta-blocker but has persevered with them.

I think taking the tablets is not a worry to me, because I've got it under control. At first I didn't think I'd have to take them all the time, I thought once I got better I could come off them. But once that was explained to me, well what else can you do?  It saved my life, so of course I don't mind taking them.  

The only side effects I had, was when I first started taking the beta-blockers, and I was really ill, sick and dizzy and breathless again. But no, I'm... I suppose I should read the packets and it says, 'You may get this side effect' but I don't!  I don't want to read what side effects I'm going to get, because who knows, in my head I might start getting them, and I don't want to do that. I know I trust my doctor, my consultant who put me on these tablets and I know that they're good for me, and if I didn't take them then I wouldn't be here probably. 

She doesn't want to know anymore about side effects in case she imagines having them.

The only side effects I had, was when I first started taking the beta-blockers, and I was really ill, sick and dizzy and breathless again. But no, I'm... I suppose I should read the packets and it says, 'You may get this side effect' but I don't!  I don't want to read what side effects I'm going to get, because who knows, in my head I might start getting them, and I don't want to do that. I know I trust my doctor, my consultant who put me on these tablets and I know that they're good for me, and if I didn't take them then I wouldn't be here probably. 

She was surprised that she had to attend an appointment in a department for the elderly.

I got home and I still felt quite ill but I took the tablets and by Monday I was feeling absolutely dreadful. I was sick and bad. My husband wanted to phone an ambulance but I wouldn't let him, but the next morning we phoned up the heart failure nurse, the same nurse, told me to come straight into hospital. My husband took me up there and they took me off beta-blockers and put me back on the tablets the doctor had given me. Then the next thing was, I went to see another doctor... about a month later, and was told just to keep taking these tablets.

This went on for about 3 or 4 months I should have said and then I had an appointment to see another doctor, the funny thing was it said 'Surgery for the Elderly' and I was quite annoyed about that! I said to my Mum, 'Will you come with me Mum, they'll think it's you not me?' Because I didn't feel elderly, I still don't feel elderly!

I saw this doctor and he explained to me the tablets I was on was helping me but they wouldn't prolong my life. This gave me a big shock. What did he mean, 'prolong my life'? He said, 'Go on beta-blockers,' and I said, 'No they make ill!' And he said, 'Please go on beta-blockers, it's proven that they will help you. You're still a young person,' (that cheered me up) 'You're still a young person, these will prolong your life'.  

She tried various complementary practices - homoeopathy and osteopathy - but found they didn't...

Yes, my sister is very much into homoeopathy. And she asks me to try it, and I did try it and... it does help some people, it didn't help me. And I tried lots of things before I got onto the right dose of medicine but no, nothing helped me not like the doctor's tablets, I don't think anything does, not for a heart. 

Did your sister try any particular treatment or any particular pills or?

Yeah I forget what they were now. But I know homoeopathy is, is very good and it does suit some people and I also went to an osteopath..a cranial osteopath I think they're called. Yeah, and I had massage and it was very nice but it still didn't do me any good. I still think that it's just the doctor's tablet's that have made me feel better. But some people it might, I'm not saying it's no good you know. And my sister gave me aromatherapy and reflexology as well because she can do all that, and it's very nice having it done, but no just the doctor's tablets make me better. 

Tells people not to give up and to carry on as normal.

If you've got a good consultant, listen to him, take the tablets and carry on as normal. Don't give up because you've got a bad heart because there's no need to, you just carry on as normal. Do your normal job, do your normal whatever you do, just carry on as normal. Don't let it get you down, don't let it make you an invalid that's the main thing, just don't let it make you an invalid, because you're not, you're just the same as everybody else. You just have to take tablets to keep you going - you're not the only one!