Interview HF33

Age at interview: 46

Age at diagnosis: 45

Brief Outline: Heart failure diagnosed 2002.

Background: Unemployed; single with 1 child.

He lives a stress-free life and says that stress is a modern word.

Actually, I've never, how can I put it? I've never thought of stress like I don't know, probably martial arts training, I never sort of had you know, you can see situations and you just say 'yeah', you know I just blow it over the wing, you know what I mean?  Because it ain't going to effect me because you're not involved. So stress, I live a stress free life actually, you know what I mean?  

Anybody comes in here and gives me stress; they're back out the front door, 'cos I don't want it in here, you know what I mean. No need for it!  So stress, no. It's a modern word, love! [laughs] It's a modern word for people who won't stop working for a couple of minutes!  I'm sorry but I don't care. You know my parents grew up and if they had the stress that I see people having now, oh gosh, oh my gosh. Stress free man, you know, wherever, you know what I mean?  

He felt bloated after eating small amounts of food.

Basically it was about end of November that I started. Developed like well, I couldn't eat my food, my food wouldn't settle.  Any time I ate, no matter the littlest thing I ate, I felt like I was bloated. So I went to my own GP who, in turn, turned round and told me that I had a... suffered with asthma, so he gave me an inhaler and this was like in November. And I was using the inhaler up until the 28 or whenever it was of December when me and my sister went out, just normal, going out with her husband and so forth, just over the Christmas, because I hadn't been with them all over the Christmas. Went out with them and ended up collapsing after coming out of a club. Got to my local hospital, they turned round and says, 'Well, you've had a mild heart attack.'  

It felt as if the slightest, anything you ate, it could be half a bar of chocolate, an apple, it just felt that your stomach was full, and that was the fluid developing on the stomach because of the heart's apparently working too hard, and the fluid couldn't get out. Right so the heart was creating too much fluid on the lungs, that's it, water on the lungs, that's what they call it.
 

His diagnosis upset his family and worried his twin brother.

They were devastated and you know they were all thinking the worst, you know what I mean? Because obviously, you know my parents ain't got no heart condition, my grandparents never had any heart conditions, as far as they were aware, so this is like all a shock to them.  

And then inherited, or whatever he said it was, like I was born with it, so I'm saying, 'Well, bloody hell, if I'm born with it, how come they ain't noticed it before?' sort of thing? But obviously they ain't going to notice it, if you ain't got no complaints, you know what I mean? You know, what was that guy on the football field, 28, died, you know what I mean? He's a fit, athletic person, he's supposed to have had a medical, right, to be playing football and he passed away. And he's only 28 so you know it can happen any time, you just don't know!

Well, it was like tearful and then wanting to see Daddy straight away and all this, you know what I mean? And in the end I just told her, I said, 'Listen, you know I'm here now all right, so just be cool, just behave.' Because it was like stressful for her, you know what I mean.  

It was stressful for all of them really, because my Mum and Dad they were like coming up with the smiles, going out with a worried face, worried attitude. My sister, who's my twin, same kind of thing, so's my brother. He started to get panicky now when I says it could be in the men-gene in this family, sort of thing.  

So everybody had their own little agendas to deal with, you know what I mean. But whatever happens, I just, all I can say is that you need to be, you as a patient need to be positive and you've got to let that positive come out because otherwise you're going to get all your people around you starting to worry. And it's just going to cause them to an earlier grave, isn't it really?  So as much as sometimes it may hurt you to find that oh gosh, why me? Then I think about the others around you because they're going through it as well, if not more than you.  

He finds the internet a helpful source of information.

But I think a lot of men are getting more conscious now aren't they, because with the internet and everything, it's there for you to find, the information is there for you to find, so therefore you're only an idiot now if you don't want to look for it. Because that means you're really walking around with blinkers all the time, you know what I mean. Because it's there for you to find, you know so.

Well, that's a good link to my next question, which is how have you found out more information?  Have you used the Internet?

Yes, because it's there, it's on, it's there 24 hours a day and provided you've got access to it then why not use it, you know what I mean? Because nobody's perfect, nobody knows everything, right, and no disrespect to anybody but you know, not even the doctors know everything. And the best way to find out anything in life is through personal experience.  

I think that's how we did it, actually, because my niece was with me, we did get some answers because I'm trying to get into this heart thing, you know what I mean? Because I had the and it brought up the diagram of the heart on there and I said, 'I've got that at home on one of them pamphlets,' and I says, 'Oh yes, there it is there,' and then she was saying, 'Well, what's wrong with you?' And I went, 'See that one there, it's blocked, it's narrowed, and you see that there it's pumping too fast, the valve,' and she said, 'Oh...' and then she got an insight into it as well so, you know what I mean? It was nice, it got us a bit closer actually, but then she started to worry, 'Oh, you're not going to be here much longer are you?' and I went, 'No, don't start!'. But you know at least she could see for herself what I was going through, you know what I mean. So if I was walking up the stairs at my sister's now and I felt a bit out of breath, they could understand. He says 'Oh, it's the old ticker, isn't it?' 'Yes,' and we started to make a joke about it and you know that's the way you get light-hearted man, and you know you've got to be! You can't take it too seriously, you know you'd be in a coffin already, man, I'm telling you!    
 

His doctors were surprised at the state of his heart.

The tissue or something under the heart itself, you know what I mean? That's why they were so, with the angiogram they were so amazed to see the heart in that condition for my age, or whatever it was, you know what I mean? Because they were saying 'well, you shouldn't be here' sort of thing, you know what I mean? Because that's the way I looked at it, anyway. You shouldn't be here because look at this, look at that, you know what I mean? And that's how they were going over this television screen. It's good though, to actually see your heart on the screen, honestly. You can see it pumping away there, you know and then he pointed out that that scar, that tissue needs to be repaired. And the only way they're going to repair it is to lessen the heart rate, which is the beta-blockers and things slowing down the rate of the heart so it's not working as fast. And like my nurse, she explained that hearts are supposed to be pumping like that [claps] - mine's like that - and it's better for it to kind of level because it's repairing the heart. So let's hope it sorts itself out.

He feels that his doctors take most interest in his beta-blockers compared to his other medicines.

No, because the main concern is the beta-blocker, isn't it? Not even the water tablets are they concerned about because they're, you know they ask you if you're still taking them and you tell them. But it's the beta-blocker that's more of, the tablet that they're more concerned with because that's the one that they're regulating with me.

Since I've been in hospital and come out, it's nearly 6 months now, they haven't altered any other tablet apart from the beta-blocker, right. So you know, even when, I had to re-register my doctor and I thought he'd give me like a medical, nothing like that. Got my notes and says, 'Okay, you can have these whenever you want' because it's like a repeat prescription and what have you. Fine, no problem but you know, are there any different doses for the water tablets? You know like in the summer, you know could it be higher because there's more intake of fluid because of the weather? I don't know, nobody's said nothing to me, you know what I mean? So, I don't know, you just don't know, do you?

Have you noticed any side effects from any of them?

Well, it's hard to pin-point because I take 4, 5 in the mornings so I've got 5 tablets working around so I don't know if it's this or that. The only one I have, well obviously the beta-blocker, when I went up from the 1mg to 2.5 and then 3.75, then it went on to 5, oh that was, you know that was when I could feel the heart, you know what I mean?  

Because obviously, well the way I look at it, it's slowing it down so if I'm continuing doing what I normally do it's putting extra pressure on my heart so obviously you're going to feel it more, ain't it? Because you've one slowing it down and there's you trying to work it and it's going, hang on, what's going on here, you know. This has said slow down and you're saying you want more, you know what I mean? So, I explained that to the nurses down there and they says, 'Oh, if you feel uncomfortable just drop that down to the one that you feel comfortable with.' Like again, none of the other tablets, nobody said nothing to me about the other tablets, you know what I mean? And it doesn't seem like they're interested about the other tablets, it's just the beta-blocker and that's it.  
 

He describes how his beta-blockers affected him.

Religiously in the morning I take them. In the evening that can be up and down, but if I miss an evening then I make sure that I'll take an easy evening and take them that evening, you know what I mean?

But the water tablets, the morning ones and the heart tablets which now have been regulated now. I used to take them in the mornings but now I'm taking them in the evenings, which I think is a better thing because when you took them in the morning, well I used to have like dizzy spells if I was to bend down too quickly, I'd feel faintish. And then my GP at the hospital turned round and said, 'Well they're changing the programme and putting them on nights because obviously, you're relaxed, your sleeping.' So if your pressure goes down or whatever, you're in sleep, it's not going to kill you so you're there in sleep so not going to feel it, which is better.

Are those the beta-blockers?

The beta-blockers, yes.

Well, it's hard to pin-point because I take 4, 5 in the mornings so I've got 5 tablets working around so I don't know if it's this or that. The only one I have, well obviously the beta-blocker, when I went up from the 1mg to 2.5 and then 3.75, then it went on to 5, oh that was, you know that was when I could feel the heart, you know what I mean?

Because obviously, well the way I look at it, it's slowing it down so if I'm continuing doing what I normally do it's putting extra pressure on my heart so obviously you're going to feel it more, ain't it? Because you've one slowing it down and there's you trying to work it and it's going, hang on, what's going on here, you know. This has said slow down and you're saying you want more, you know what I mean? So, I explained that to the nurses down there and they says, 'Oh, if you feel uncomfortable just drop that down to the one that you feel comfortable with.' Like again, none of the other tablets, nobody said nothing to me about the other tablets, you know what I mean?  And it doesn't seem like they're interested about the other tablets, it's just the beta-blocker and that's it.  
 

It took him some time to realise that surgery wouldn't help his heart failure.

And okay, I'm still here and the tablets are helping but you know, at the end of the day, I sometimes wish they had said, 'Let's do the operation,' because you've psyched yourself up mentally now to say 'Well then, okay.' You're talking to the nurses and what have you and they're all saying 'Well, it looks like you're have to have a bypass or... could be a transplant.' And I says to them well, you know, they don't know but they're just talking you know what I mean? And I'm thinking, 'Yeah, right!'  

So you get talking to the patients and then you find out this patient is waiting to go on to go to another hospital to get his angiogram or bypass or whatever, and he's been in 6 times. And that bloke's been waiting 18 months and you know, you start to get a better picture of what actually is going on.  

So you know, I come back down to earth then, I says, 'Well, I ain't going to go and have an operation,' because if he's been here 12 times and he's been here 18 months, in and out, and every 5 weeks he gets a phone call, come in we're ready, and he comes in and spends 2 weeks, and I'm sorry you know I'm saying, 'What chance have I got?' I mean I'm just here like, so you know, so I says 'Okay then.'  

So I talked to this one nurse and she says, 'Well, that's the way to think about it, have a positive think that the tablets will help you. Do light exercises, do things that will help motivate the heart to get back or to help the arteries open' or what have you. And that's what I've been doing ever since, know what I mean.

His heart failure nurse has booked him in for a course to help him quit smoking.

Well, how it works up here. I have an appointment at my hospital every 2 weeks to see the one British Heart people, right. And they're the ones that are giving me the beta-blockers to slow the rate down and I'm supposed to be going up in percentage, I've reached like 3.5 now and I'm supposed to be on 10 eventually. But you know, it's a process that you take gradually, it's up to you, you know what I mean? It's up to your body how it responds and what have you. But apart from that, that is basically, that's it. The only person I'm seeing, not even the consultant when I was hospital, none of the people really am I seeing. 

So you're just seeing the nurse?

Yes, you know what I mean.

So you're seeing the nurse every 2 weeks and what does she do when you go and see her?

Normally when I see her, it's blood pressure, weight, height, right, generally ask you about your cholesterols, like for instance with me now, with smoking and what have you and how I'm getting on with it and you know, like I say, I'm booked in for a counselling course and what have you. So you know, she's like the liaison and I think she makes all the notes down. So obviously, I suppose the consultants are seeing the notes so obviously if they see something irregular, obviously they would call you in.
 

He does stretching exercises and sit-ups now rather than martial arts.

I still do the skipping. The martial arts I've had to cut down because it's, I don't know, I can feel, whether it's my mind or conscience or whatever, but I can feel my heart when we're going through certain exercises. And I can feel it going [claps] and I don't think I'm supposed to feel it doing [claps]. You know, it's supposed to be [slow claps] so I've had to cut down, but I still do the stretch exercises and sit-ups and what have you because they still keep your upper body strengthened and your leg strength, you know what I mean. So it's still good for you.

Describes feeling pressurised to join research projects.

I think they need to, and then you've got all these people who, like in the hospital, who are all different segments of other organisations wanting you to sign up to do this with them, to do that with them and you know, because 'this is an unusual case' sort of thing.  They should stop all of that, you know what I mean. The person's got enough to worry about trying to get out of the situation they're in, sorry get out of the situation they're in, right and family, immediate family, girlfriend, whatever, they've got a lot to consider there, more than having these other people come in, 'Oh can you sign this form for me?'  

This was like thee days after I'd first got admitted, all these doctors coming up and asking me to sign and I says, 'No, no, no,' I says, 'Let me have a word with that person there, you know what I mean, because that person's looking after me.' You know what I mean? So I think that needs to be broken. I know they have to do their research but I think there should be a little bit more tactful way of doing it, you know. 

His attitude has changed and he no longer worries about the time it takes to do things.

You know, if I'm preparing something in the kitchen, I mean if it takes me 20 minutes longer, it's still prepared isn't it? If I'm going upstairs and I feel short of breath and I know the bath's running, you don't turn it on so full any more, you let it trickle, you know what I mean. So in case, you know what I mean? All them things you start thinking a way different. Or that's what I've done anyway.  

One time, the first time I came out of hospital I came back longing for a shower. Jumped in the shower - oh I want a bath - set the bath, came downstairs. I'd forgotten that the bath was running! Luckily I got upstairs and it was just starting to just, you know that moment when a little more would have come over' And I went, from then I says no and I'm setting the bath, turn it down low. If you go upstairs 5 times because it hasn't set properly, it's better to have it low than to be overboard, isn't it, you know what I mean? Next thing they're going to say, 'He's incapable of living by himself' or whatever. You know so you've got to think, you've got to think a way different, you know what I mean. 

Says he prays and puts himself and his health in God's hands.

Well, we're all religious in a way and when things happen we all call his name no matter, I don't care who you think you are, right. Right, you're still going to say 'Oh My God,' right? So if you don't believe in him, why call his name? So he is up there, right. Now, it's not so much that I was brought up in a Christian background, obviously right, but obviously as you go through life you learn different things, right. And you know... I put myself in his hands at the end of the day. Like I said, if I was going to through an operation I have to trust in him and he's going to use the doctors as an instrument and help them to help me, you know what I mean? So that's all I could do, all I could wish for, just pray to him saying, 'I hope it goes through.' If it does, it does, I'll see you on the other side sort of thing!  And that's it basically but it's not so much, I have my beliefs, everybody has beliefs and everybody interprets their beliefs differently, you know what I mean? So, I'm not saying follow me or do this but we've all got beliefs you know.

He missed two days’ worth of medicines when he ran out.

I mean I’ve had a situation where I’ve had to miss two days because I ran out, because my doctor my GP, it’s like 24 hours waiting. And you know two days without it, you know what I mean? I’m thinking how I could feel the pressure coming back so I’m saying, ‘No’. Those two days you’re just in zombo, you know you just don’t want to do anything because you’re frightened that if you go out there you’re going to collapse.