Interview HA05

Age at interview: 39

Age at diagnosis: 37

Brief Outline: Cardiac arrest May 2001, 21 days in hospital. Coronary artery bypass surgery July 2001. Heart attack 2003, heart failure diagnosed. Current medication' aspirin, ramipril, carvedilol, clopidogrel, nicorandil

Background: Retired manager; Married, 2 children

When he had a heart attack after bypass surgery, the ECG showed no new changes.

I wasn't feeling well and I parked up deliberately as close to the door in the cardiac unit as I possibly could. I walked very, very slowly, really slowly, because it was aching. And I went in, took myself and told them and they put me on the ECG and they said there was an ST elevation. 

But that in itself doesn't mean anything with me because [pause] apparently postoperative coronary artery bypass graft, my ST elevation is raised anyway now, that's my normal ECG. So I have to carry one around with me so if I ever go to hospital they ever need to compare that with that and it's the changes. 

So although there was an ST elevation it wasn't anymore significant than before, but as it happened my consultant was around and they went to speak to him. And this is the weird thing, I'm, I'm telling the truth now, but this, this, this is how it was put to me, 'Well, if you want to come in and stay you can but it's up to you, you can go home if you want'. 

And this is twice now, once the ambulance [laugh] and this time. It shouldn't really I don't think ever be my decision, particularly when you're in that state and [pause] I think, you should, if anyone is listening to this err on the side of caution. If you're not sure at all, go, stay a night, you've wasted nothing, we did.  

I was still in pain, they gave me diamorphine, they didn't thrombolyse me this time, they took the troponin I think they take it 15 minutes, then they take it within 24hours later and I think the first one came back; it was 'You're okay'. But the next one, the next day ooh, heart attack. And they're 'We can't believe this', I'm like, 'Believe it, it was, I don't make it up', so he would have sent me home in the middle of a heart attack. So I was actually having a heart attack at the time.

Describes the very different approaches taken by two consultants and the effects on him and his...

We had two very different experiences from consultants, now whether this is a difference between cardiologists and surgeons I don't know. The cardiologist, my wife and I called Dr Death because he just gives it pretty much as it is, and, and when I said that they'd called my family in on the Saturday night, they'd been there till ooh, maybe 10, 11 o'clock whatever on the Saturday some of them and they'd gone home.  

My family are 40 miles from here, they're not next door and then they were called back in at 1 o'clock in, it was early in the morning, in the early hours of Sunday morning they were called in to be told look you'd better come across, because we really don't think he's going to be here much longer. And on the Saturday they'd been arguing about whether they were going to do this balloon, so they'd already been talking about that before I got really bad. 

And the Dr Death as we call him, it's a good job I don't give you the names here isn't it, [laugh], had been saying, 'I don't think he'll be around next week', you know. Where as the surgeon is saying, 'Oh he'll be up and fine, he'll have no problems'. So you'd that kind of polar view, both from very senior people and my family didn't know which one to take, because they hung on this one, the positive one.  

I think he's probably going to think he's trying to give it like it could be, but he probably over does how bad it could be. You don't want an over realistic view but similarly you don't want to be told that just 'Well, no it, you could be dead', because I think everybody knows if it's heart, you know, if it's a serious heart problem, yes of course you could be dead, you wouldn't be here otherwise, just slightly overplayed it. But having said that I think I have surprised him and that's maybe because I'm young and as I said I was fit. 

It took a long time to recover from his heart attack and now because of heart failure he has...

-This has been going on two and a half years now, you know because as I say it was May 2001 so this has been going on a while, most of their lives. And initially it was very bad, because you couldn't do hardly anything because physically you just couldn't move.  

Now I can do more, but I just have to make sure I get rest and I have to be careful of not doing too much or putting, cause I think when I walk, unfortunately round here it's hilly, as you've seen no doubt when you were driving. And they say well you can go out for a short walk on the flat. 

Get me to the flat first, then I'll do me short walk [laugh], I can't [laugh], I either start up the hill or go downhill and I've got to turn round and come back up, and when I go out for walks yes I can get, it starts, so I have to stop and ease off.

It's not so much fibrillation but you, you can get ectopics, what I feel are ectopics. It starts beating suddenly very quick, you know. Not as if under normal exercise it gradually it gets quicker, it could just be going along and I'm not out of breath.

Again this is probably the other side that my respiratory system is probably still very efficient and that's what made you a good runner, so I probably get oxygen passed through very well it's just unfortunately that the blood's not as good as, as getting rid, passing it along. 

So I'm not out of breath and I'll suddenly go from probably feeling 90 beats per minute to [noise] you know, well over 140, 150, so I just have to stop. Now what suddenly triggers that I don't know it just, suddenly it happens, and so you play wise, you stop, calm down and try and, and set off again.  

And that kind of thing I find frustrating, cause obviously I've always been intensely physical, was competitive, the competitive side which probably going to go as you get older anyway but I was intensely physical, you know. I used to love just running up the hill or a mountain if it was there and [pause] now I can't walk without having to stop, it's such a change it's quite frustrating.  

His wife provides the majority of the support.

Without a doubt my wife is probably the one person that's [pause] taken on a lot of supportive role that people don't see. The actual, from the actual medical side of course, it's the staff and the treatments that have pretty much helped me survive and maintain me. 

If you stopped the drugs tomorrow, I'd probably die fairly quickly because my heart wouldn't survive on its own. But that's only part of the story. Reducing the stress, reducing the load in terms of things that I do, is taken on board and so obviously by my wife to a huge degree, with having two young kids as well.  

And that's sort of like the unwritten side in that, I'm fortunate to have that. There are people who are single, there are people that are married where they might not even get that, they don't have that kind of support and perhaps as a, as a country we take that for granted and as a society, in that we've looked at things like it's too much detail but the kind of support that you get with DLA [Disabled Living Allowance] etc. 

I think they always assume that because I've got my wife that she'll do everything for me and that's a little bit unfair on my wife, what if she wanted to go out and work full time and have a career, it's now assumed she can be around supporting me. 

I don't think that's necessarily a totally fair assumption, of course you marry me for sickness and health and all the rest of it, but I think as a society, as a society we should have probably better broader care.  

The benefits of Reiki were deep relaxation and time out to reflect on his experiences.

I didn't think it did an awful lot. The person I went to see was actually a Reiki master as well, a Reiki healer and she did one Reiki exercise on me, mainly where I laid down and put the hands over the face and you can feel the warmth. Whether that's this magical transference from A to B or the fact that you've got a small amount of air between A and B and of course it heats up between the two. Body heat, is what I think it is.  

You still feel that but for me, it doesn't matter where you think necessarily the energy comes from, whether it's a mystical being or whether it's from somewhere you can see, you can understand. It's about feeling relaxed and can you think deep and get in a relaxed state and I can. 

I've always been able to do that before, so I was okay with that, but it didn't, wasn't as if oh this was now hocus pocus, it makes no difference, it was just another technique, somebody else being able to do it to you. Just like massages, those sort of things can deeply relax you. 

And some of the sessions were okay in that it, I think that what was good about it was, it was a set time to think, time out of here if you will, just to sit and perhaps just chat a little bit and then just reflect. So that was probably the biggest benefit. There wasn't anything that I came away thinking, 'Oh, I'm glad I did that because now I feel better about this.' I don't think there was anything so startling about that came out of it.

He feels conscious of people looking at his scars when he takes his children swimming.

You get very conscious about some of these things. It's weird when you, like we're about in November we go, as a family we go to the [a leisure complex] in [the lake district] every year, and it's lovely, but I went last year and you go into the pool with trunks. Well I'm, I look like bloody Frankenstein and you just see people going [pause], looking at you like that.  

What do you do, do you look at them in the eye or, or you carry, or if they catch you, it's things like this. I've just got to carry on but, but you do feel so self-conscious of it, you try not to but it's worse because with being, still relatively put on a lot of weight on from the running point of view, I'm still relatively thin, by comparison to, to most people and, and the, the scars have what's the phrase, is it gravelled up or grained up or whatever they've, they've become quite proud and, and the skin, so they stand out. 

And you've got this big one there, down there, your tracheotomy, there's these, four chest drains, there's two there either side, you know. And you've got from there down to there and that's fine, that's actually healed up you can't see it, but from there to there it almost as thick as me, me finger.

The scars?

Yes, so of course you [laugh] you're walking, I mean if I saw somebody like that you'd just go, even if it was, I would have mine, “Oh bloody hell what's up with them?”, you know and you just like, and you just feel. The kids don't really comment on it now they just go, that's where you've been sore yeah, things like that.

Describes how his young children reacted to his scars as he was recovering from bypass surgery.

I mean initially when I came back I sometimes do forget she wanted a hug and cuddle, she's one of those crawling all over you. She couldn't because physically, this is after the bypass, well you're in real pain, and just a little nudge here were like, and it was painful and they'd be upset if they hurt you, so you have to be very careful. I mean my son is the most adorable loving creature you could ever see.  

It's quite surprisingly is, you'd almost think I hate gender stereotypes because most people say the behaviour he exhibits are female and that he's so loving, he gives you a kiss but if he gives you a kiss he asks for a hug as well. If you just give him a kiss and walked away he'd be upset, give me a hug as well. 

But if I'm hurt, if I feel as I'm, say the scar, he'd go and kiss the scar, I'll make you better, he'll come and kiss and hug and then go away again. So that's what I get from them, you know the hug and the kiss and they'll actually touch the scar and kiss and walk away again.  

The cardiac rehab programme was not as strenuous as he would have liked it because he was the...

There is a cardiac rehab and I initially went through that in terms of some of the exercises but again that's, you see that's the weird thing in that, I'd go there and of course I'm almost half the age of most people on it and they're doing the exercises. Well I'm like, you know, it physically wasn't, although my heart was, was, obviously you've got to be careful, I'm governed by my heart and what my muscles and brain can do, but I, I moved through it reasonably well. 

The first few weeks not so, because I was still recovering from the chest and so I was getting intense pain, I was having to sleep sitting up. So when they did for example the floor exercises and say, 'Lift your body off the floor', I couldn't get up again [laugh]. I'd have to roll over on my side, because it was so painful to move your body that way. 

But in terms of the other ones, like lift, lifting your knees up and what, I mean, I can go for ever and a day at that. But again it's comparing, I think, understandably generally within the medical profession you get a range of people to you, you tend to discuss the general the norm.  

Well from a physical point of view, as I say, I was well outside the norm, there were those who were pretty ill before they come in, there were those who were, physical attributes that make them great athletes or whatever, you know. So I'm probably going to be a little bit different to the norm and, and these are some of the areas that I were. 

So as I say from a personal point of view, I'd like to have done more. And I did go to a gym then you see and started doing, I joined a local gym, I started doing more there.  

He has heart failure after a severe heart attack and now he tires easily which affects his daily...

Every day I'll need some kind of rest, this has been a well-used couch if you will and, and that's anything from half an hour to 3 hours. I just have to lie down and, and you, the tiredness it's difficult to describe. 

It's like, if you'd doing a series of exams, 3 or 4 exams and you've not slept in between or anybody that's had young children, very young children, those first few months particularly if they're not sleeping and you're the one that's having to get up or you sharing it between you, and you get 3 or 4 nights of no sleep or hardly any, where your brain can't think, you can't digest the information, you actually don't want anything there beyond you, you don't, you can hear a television but if somebody asks you a question, well that's now too much information. 

I can't take two things at the same time. I have to turn one off, [pause] and automatically that's, well I'm not listening to you, it, that's how it goes, it, it's just so fatiguing and its, my family get the brunt of that unfortunately.

He doesn't have the energy to play with his young children as much as he wants to.

If I do play with them they are energetic and I love playing and I like doing stuff with like from an early age, you roll round and pick them up and swing them and do that sort of stuff with them, which not all parents do that, but that's something I'd do. I think it gives them like a bit of strength and rough and tumble but different parents differ, I don't make any judgements on any other parents, that's how I do it, but physically that has a, an impact on me.  

It's one thing sitting down and read a book, okay, you can do that for a while, but having said that, you can't really do it if you're really tired either, trying to concentrate it's not easy. But physically if you lift them up and doing that, I get out of breath quite quickly, now they're just getting hyper and hyper and hyper, they want to do it more and more and more but I have to say, 'No'.  

Now they tend to understand that, 'Ok, Daddy's tired now, have a rest, Daddy's tired' and [my son] will say like you he'll go out like, say going to grandma's, 'Are you tired', 'Yeah' and they'll kiss me leg and walk out in to the other room.  

Now okay he understands that I'm tired, so that's what I'm trying to get that there is a reason, it's not just no Daddy just doesn't want to do, I want them to understand that there's a reason, because I don't want them thinking I'm doing it I'm, pulling away from them because I don't like them, there's a choice thing there so that's what I'm trying to do but it, you know, it's not easy when you, it doesn't help me when I hear them saying things like, 'Oh you, you can't do or you can't read' and my wife then ends up having to read with them or play with them, because I'm just so tired, I'm just laid, laid out there.  

Because it often coincides when they come home. I go and pick them up about half four and come home. Now as I say, that's starting to get to be the time when I get worse, it can be anywhere between half three, four and say seven, well that's the time when they're home, when they're crammed and tired, they've been at nursery all day. 

So the combination actually isn't a very good combination, weekends are slightly different because you've got the whole day, you know, but of an evening it sometimes it's okay other times it isn't. I, all I need to do sometimes I just want to lie down and rest and they want to play. What do you tell them?

He talks about how he copes after having a massive heart attack and now heart failure.

But you know, I look at, I've had two and bit years extra to after having a [cardiac] arrest, a lot of people would have been dead then. People have often asked me on the moral front, 'Why you etc?' you know, how can there be a God that allows people to be ill. I tend to think, He, for they call him a He, was there that night that helped me survive, because I actually had last rites twice in the first three days. If He hadn't been there then I wouldn't be here now, you know.

I try not actually, thinking about the here and now too much, or even about the future what may happen. A lot of it's probably about soldiering on because, I'd probably get upset if I think about how I feel about things and, and not trying to put a, a morality on it and 'Why me?' sort of thing, because that's just a, a dead end, I mean there's just, just nothing, nothing to be gained in looking at anything like that. And I can't change things. For what, whatever reason it's happened, the fact is I now have this; it's now about how I go. 

I'm trying to get a quality of life and do things as much as I can either me by myself, me with my wife or me with the kids of which, whichever relationship that is at various times, trying to do things. My, my biggest fear is dying while they're still young, before they understand, not being able to put in much, much of an imprint on them and support so they can be self supporting to a degree.  

Find out information from the cardiac care team and talk to other heart patients.

Beyond that, is yeah, do ask questions, don't be frightened to ask questions. I find it not so much the, the doctors and the consultants don't want [you] to ask, I think they're just unused to putting in layman's terms and I think they can quite quickly flummox you. And they don't have time to be fair, they really have very limited time, but make use of, for our condition, the cardiac nurses, who I find are pretty good.

Make use of the cardiac nurses and the other support networks that come from that, like you go to rehabilitation, you meet other people. Talk to other people, realise that they've been through something similar, that you can actually get through it, as bad as it may feel at the time.