The people we talked to passed on messages of advice to others, based on their own experience. People are all different and what works for one person might not work for someone else (see 'Reaching acceptance about heart failure'). Here are their comments'
- Take someone with you to consultations - two sets of ears are better than one.
Advises people to take someone with them to consultations so that nothing is missed.
Advises people to take someone with them to consultations so that nothing is missed.
Age at interview: 49
Sex: Male
Age at diagnosis: 46
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I have my wife with me who is... a great, great support to me because when we are having sometimes the discussions, she's always with me, when I'm with my doctor, my GP, my cardiologist, talk with the team down at the transplant unit, she's always with me, at my request. I don't think she always wants to come with me but I always say please come in with me because, you know, two sets of ears are always better than one, and then to have somebody you can discuss it with, to say you know, 'When he said such and such, what do you think he meant?' is far better than saying, 'He said such and such, what do you think?' because they've actually heard it as well and they've heard and in the connotation etc., so I would always say you know when you are in a consultation always have a second party with you. Plus the fact, you tend sometimes to wander, that's a pretty broad statement, I tend to sometimes... my mind wanders off the point a little, you know I'll still be thinking about something they've said to me, and they've gone onto something else and I've sort of missed a wee bit, so it is always better to have somebody with you.
- Prevention is better than cure so pay attention to diet and exercise.
- Do things that you always did, but take it more slowly.
She tells people to look on the positive side and get on with life.
She tells people to look on the positive side and get on with life.
Age at interview: 63
Sex: Female
Age at diagnosis: 61
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Anybody, yes just look on the positive side. Just think about it, that there's always somebody worse off than you and just get on with your life even if it's at a slow pace. But just do the things that you did, but do them more slowly, and hopefully it will be... you know, everybody else will, just plod round and do like as if'You want to be felt the same, you don't want to be treated different, you don't want to be 'oh she's got a bad heart, don't do this, don't do that'. Just get on with life, that's it.
- Do as you are told by the doctors; take your medicine and do as much exercise as possible.
- Think about what you can do to help yourself and always ask questions.
- Take each day as it comes; do what you can and leave what you can't manage.
- Don't spent your time worrying, stay determined and always try.
She trusts in God to look after her and says you must be determined. (Video and audio clips in...
She trusts in God to look after her and says you must be determined. (Video and audio clips in...
Age at interview: 84
Sex: Female
Age at diagnosis: 82
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(This interview was conducted in Punjabi and the transcript translated into English.)
'I live here alone but my son phones me twice a day, first in the morning at 5 o'clock. In America it's 9 o'clock at night. There's about an eight hour difference. He always says, 'Mum, you must look after yourself.' I tell him that I do and that the rest is taken care of by God, he's my keeper. That's how it is for someone on their own, isn't it? You can't spend your time worrying, you have to stay determined and always try. That's how my life is, dear.
- Take care of your partner and main carer and be patient with him/her.
- Concentrate on living and don't dwell on the future.
- Don't be afraid.
He's prepared for death and isn't afraid.
He's prepared for death and isn't afraid.
Age at interview: 82
Sex: Male
Age at diagnosis: 72
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I'm aware that I could die at any moment, I'm aware that I might not be here tomorrow. I've tried to meet that circumstance, it's a mental thing, I have arranged my own funeral, I've paid for it, and tried to set my affairs in order so that whoever tries to look after my estate whoever it is, will have the easiest passage imaginable. I've brought my financial affairs into some sort of simple order and I don't worry about the future. I've done all that I possibly know how to, to cope with that eventuality whenever it happens, whether it happens tomorrow or three years time or what have you.
But I'm not worried about the future. I'm not afraid of death; I'm afraid of dying and there's a difference isn't there. I mean if I went to bed one night and didn't wake up in the morning that would be the way I would wish it to be, just as simple as that, like turning over a page.
- Have a cry if you feel like it.
- Try to face your condition head on and say to yourself “I'm going to make the best of my life as it is”.
Encourages people to make the best of their situation and be philosophical.
Encourages people to make the best of their situation and be philosophical.
Age at interview: 62
Sex: Male
Age at diagnosis: 56
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No, I think what it means is it is the things that are happening to you 'it doesn't really matter' because you put them into a perspective that you can handle. And I would just say to people that I'm sure you're feeling pretty down and depressed about it all but that isn't going to help you. And I know it's very difficult but you've actually got to say, 'Well, you know every day you take it on its own and deal with it', and just try and think of the fact that you know, for a start we're very lucky, probably to be alive at this age anyhow because not that many years ago the life expectancy was about 40 (I know this doesn't help people, young people who get heart problems and I can't really relate to that in that sense), but the answer is you've just got to try and face it head-on and say, 'Well, I'm going to make the best of this. And that's it!' - or sit on the sofa and cry your eyes out. I know which I'd rather do.
- Don't let it make you an invalid. You're the same as everybody else and you're not alone.
Tells people not to give up and to carry on as normal.
Tells people not to give up and to carry on as normal.
Age at interview: 53
Sex: Female
Age at diagnosis: 49
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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!
- It will be with you all the time so you've got to learn to put it to the back of your mind.
- Carry on as normal and hope for the best!
- Learn to live with it and slow down.
- Don't let having heart failure rule your life; just get on with your life.
Advises people to get on with life and do what they want to.
Advises people to get on with life and do what they want to.
Age at interview: 55
Sex: Female
Age at diagnosis: 53
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I think the only advice that I would give, is just to get on with your life the way that you would like to do it. Do what you wanted to do, even if it means doing it just a little bit slower. Because that's the only way it's affected me and that's the only advice to give really. Don't become an invalid with it; don't let it rule your life you know. That's the only thing to do, just get on with your life.
- Accept it because if you don't you'll be struggling all the way through.
Last reviewed April 2016.
Last updated April 2016.
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