Interview HF29

Age at interview: 49

Age at diagnosis: 44

Brief Outline: 1998/9 idiopathic dilated cardiomyopathy and heart failure diagnosed. Experiences episodes of chest pain and breathlessness.

Background: Unemployed; married with 3 children.

He found his diagnosis very difficult to grasp.

I was convinced, I'm not going to sleep I'm going to die, I'm not going to waken up. They've said I've got heart failure, does that mean I could go for a bus and just die at the bus stop? I think for a layman it's hard to take in when somebody says, 'You've got heart failure', you don't understand it, the term. The doctors will explain that, explained it and explained it but I find it hard to take in!  To me it's a bit of double dutch! I don't know you know, I think the word 'heart failure' frightens anybody. It's like the word 'cancer', anybody's got cancer it's everybody's terrified, 'I'm going to die - but some do, some don't!'

It is difficult to grasp because you can't basically see what's wrong with you. You can feel it inside you, I mean you've chest pains, and you say, 'Something's not right', but it's hard to grasp, I've been sitting looking at scans and things like that and to me it's just a big blob there somewhere, so why am I still ill? I'm a big fella, I'm a big fella so I've got a big heart, but it doesn't work that way!

His first thoughts on getting his diagnosis were 'how long have I got?'

I thought I was dying! Yeah. That's the first thing you think you know - I've got the heart failure and I'm dying - how long have I got? How's it going to affect the family... all the things go through your mind the first month or so.  

I was convinced, I'm not going to sleep I'm going to die, I'm not going to waken up. They've said I've got heart failure, does that mean I could go for a bus and just die at the bus stop? I think for a layman it's hard to take in when somebody says, 'You've got heart failure', you don't understand it - the term. The doctors will explain that, explained it and explained it but I find it hard to take in! To me it's a bit of double dutch! I don't know you know, I think the word 'heart failure' frightens anybody. It's like the word 'cancer', anybody's got cancer it's everybody's terrified - 'I'm going to die- but some do some don't!

Having a shower can make him feel as though he's run a marathon.

I find it's only when I'm exerting myself. If I go for a shower I've got to sit down for an hour after it. I've actually got a shower chair in the shower room to sit in the chair and dry myself because I can't stand after I've had a shower, it's very very tiring..

Can you describe the tired, it's not tired like I'd feel tired is it?

No it's like exhaustion. You'd run a marathon and that's how you feel after, well I feel like that just getting a shower. You'll feel dizzy, sometimes nauseated, basically just really really breathless, and you can feel your heart pumping as well. You can feel it thumping you know, it's weird, it's a weird feeling so it is. It's basically tiredness like when I say running a marathon, well I have that with a shower which is a big big difference.
 

He feels that heart failure nurse care has kept him out of hospital for 2 years.

The nurse that comes out just now, she'll come out and take my bloods and the IMR take them back to the hospital. She's usually here about 10 o'clock in the morning, and by 4 o'clock I've got the results from the hospital, blood test results she phones me up that day and tells me everything's fine, or if I'm a wee bit off she usually speaks to the consultant as well at the time, and he'll say well you know put the water tablets up or cut them back, try something else.  

But basically the system I think is fantastic. It's kept me out of hospital a year, maybe two years, I think, yeah, two years now. I've been in a few times when they take you in for a test or something.

One day I went up to the hospital for my tests, my drug test at the clinic and found my blood pressure was sky high and so they took me in for 24 hours, didn't find a reason for it, it was just one of these things. Between the drug tests and the cardiac nurse I think there's a great system, I think every hospital should have one and a lot of hospital don't have it.
 

Describes the care and consideration shown by his consultant.

The one I'm under, the specialist, is fantastic. He's that good that the wife and I always say if we won the lottery we wouldn't go abroad because I couldn't take my specialist with me! That's the way we talk, it's..when you go abroad because I wouldn't get the same treatment. He's really, he's a caring doctor as well as, you know, he'll talk to you, it's.. he talks you down to earth like it's not all medical. He'll speak to me on my terms rather than speak to me and talk about cardiomyopathy and things like that, whereas he'll talk to me 'Your heart's not working well'. It's a good system.  

He's a caring doctor, he's, it was him that done my angiogram and I thought, 'Oh he'll just get some young doctor to do it', and when I went in he was standing there, joking with the nurses talking about his family. And you know it helps, it reassures you that you're getting something like the angiogram, I'd never had it before, this was the first time, I was terrified, I was crying with the wife before you know, are they going to find something here that they're going to say, 'You've got 6 months to live'. Because before I got the angiogram it was a case of they thought maybe that the tubes were blocked, they thought I'd angina. So going for the angiogram I was terrified what they were going to find, and yet the doctor reassures you, he jokes with you, laughs with you, you know, that helps you to settle down and then as soon as he's finished he explains what he found, that there wasn't any blocked tubes, I've not got angina and he explained it all. As soon as I got back to the hospital ward again he was inside in 20 minutes, he was by the side of the bed, explaining what he'd done, how he'd done it and what he found. I felt a different man after that!

He has an alarm system set up to remind him to take his medication.

I take 7 in the morning, 4 at lunchtime, 3 at 6 o'clock, and I have one going to bed.

How do you remember them?

Alarms, I've got two alarms in here, up on top of the cupboard there, one goes off at 4 o'clock - that's my frusemide tablets. That one goes off at 6 o'clock - that's my warfarin and my heart tablet. The other ones I just take when I go to bed. When I get up first thing in the morning, 8 o'clock, half past 8, I've got to take my morning dose which is, that's the main dose, I take that, and it's 7 there in the morning. So it's alarms everywhere! When we're out one of the kids usually sets their watches for me, they've got a watch that's got an alarm on it so they set the alarm on that.  

Sometimes you forget, I mean I must admit it's not the first time I've missed it out, but you've just got to take the worry out and let the hospital know that you missed the dose out. It's only happened twice so that's not bad.

Have you ever felt like not taking them?

Oh quite often, every day you feel like, 'Do I really need to take this?' You're restricted. You go on holiday, like we go down to the wife's mother's and I've got to take a box with tablets, lotions, sun cream - you name it, just for myself because you know - you can't do without them.  

We went to Ibiza last year for the first time, I still had to explain to Customs why had a box of tablets and what they were for. I had the list with me so they could read that, and in this respect you do feel like, 'I'm fed up with this' you've got to go home and get the tablets at 6 o'clock and take them you know. 

Describes how his fluid retention keeps his weight high even though his diet has completely changed.

Yeah, I've always been heavy-built. I've tried numerous diets, the doctors tried me on this that and the next thing, I'm under the dietician just now, I'm actually due back next week. 

Fluid retention is a big thing with me because the heart's not pumping right it's..I get a lot of fluid retention. I'm on frusemide tablets but it doesn't keep the fluid away. It'll build up and build up and build up. So I can go to bed at night time and I'll be say 22 stone, I can wake up the next morning and I'm 22 1/2 stone and I swear it works with me. I take my tablets and I take the extra tablet which is bendrofluazide, and I'll be weeing all the day, and I'll go to my bed at night time and the half stone's away again! It's just fluid, just constant fluid. So that makes you tired as well, carrying that extra bit of weight and you feel it, you know it. I mean I'll get up in the morning and I'll say to my wife, 'The fluid's back,' and she'll say, 'How do you know before I've even set the scales?' - I stand on the scales every morning, and it's annoying, I can't stand it, I hate it because it goes up and down, and up and down. 

One night you'll say to yourself 'oh great I'm away back down again', you get up the next morning and 'no, I've half a stone back on again' and it's really annoying but you've got to do it, you've got to stand on the scales every morning and get yourself weighed and check your weight because it's the only way I know for sure that the fluid's back again. 

Is there anything you can do to lower your own weight, I mean can you do?

I've been dieting for at least the last 6 months pretty rigorously. I used to be bad for the likes of Mr Kipling cakes - I loved them - but now I just, I get myself a treat of the weekend of one or two but that's it!  During the week I try and stay off the pastry, I don't eat a lot of potatoes. Fry-ups - we used to have a fry-up every second or third day and now basically if I have one, it's once a week. The deep fat fryer's hardly ever used because, myself and the kids don't eat a lot of chips now.  

I've changed my way of eating a lot but my weight's not getting down and psychologically it's terrible because when I go back to see a dietician next week I'm going to say to her 'What's the point? I've given up this, that, this, that and it's probably helped me giving them up, but to me it's not!'  I've still got the same weight as I started off with.

He eats less fruit than he should but generally his diet has greatly improved.

What's she made you give up?

Cakes, biscuits, crisps. Don't eat a lot of cheese, I used to eat cheese terrible, something terrible, now I'm on a quarter pound a week, that's all the cheese want, so it's not a lot I don't know what kilograms, I can't work those things! Juice, I used to drink an awful lot of juice. I've been tested for diabetes and things like that, but it's all came back okay, but I drink a lot of juice, a 2-litre bottle. I've seen me drink that in a day, so I've started going on to diet just water. We buy a lot of bottled water now where 6 months' ago we would never think of it, we'd say why are people buying bottled water for when you've got a tap there? And now of course, no, the bottled water is a good thing for me, for diluting juice rather than fizzy juice.

It's changed, she's changed my way of eating, sweets, I used to be a big chocolate eater and now I can't, I'll have it at the weekend I must admit I have a bar at the weekend, but... no she's entirely changed my way of eating.

What about, I mean does the dietician say the normal thing which is you must have five portions of fruit, do you find that difficult?

I find that difficult. I'm eating a lot of tinned fruit and she said that's all right so long as it's in natural juice and not in sweetened juice. So the wife buys a lot of tinned fruit now - peaches, pears - fresh ones are alright, but I find they're not very nice just now so I don't eat them. Oranges - I love oranges! [laughs] Bananas I can't stand - and they tell you to eat a lot of bananas because of the fibre - but I can't stand them! So fresh-wise we eat a lot of fresh food now. The wife'll, if she's making things like stewed sausages she'll make them herself whereas 6 months' ago she'd go into the freezer cabinet and buy a packet and stick it in the microwave. So the dietician has told us that you're better cooking yourself.

He left off two doses of his diuretic medicine but it made his gout worse.

Are there ever, have the feelings that ‘I really don’t want to take this’, have you ever actually tried not taking them and then been ill.

No not really because it’s been explained to me just how bad I will get ill, if I refuse to take my tablets, I’ve missed out doses that, I felt tired, headaches side effects are dizziness because I’ve missed the tablets out, so I never do now, but you do get to the point where you say ‘I don’t want to take this’ - because, the water tablets especially since this gout’s came I’ve been saying ‘I’m not taking them I don’t want them’. I actually missed out two doses because I says, ‘No it might bring the gout back’, and I missed out the doses and I went to see the consultant and he gave me a right rollicking and put me on the Bendrofluazide, and three days after, the gout was back you know, so I know that especially with Bendrofluazide, that if I take that, three days later or 4 days later I’m going to have the gout back and I can’t walk. 

The wife had to buy me a walking stick to help me round the house. The last time we were using the chair in the bathroom and the shower room she was wheeling me from the bed to the shower to go to the loo since then, the cardiac nurse that comes out, has brought me a bottle which is, it’s not a thing you want in your house for your kids to see but it’s helped the wife, she doesn’t have to push me from one room to the bathroom now.

So medication-wise I’d love to say, ‘No, I’m no taking anything more of that, that’s it’ but I know if I don’t take it I’ll be in hospital if not even worse than that, so I can’t afford to no take them.