Looking for information about heart failure
Most of the people we talked to had been given information about heart failure by their own doctors and nurses, or from leaflets available at the hospital or GPs. Some wanted to know more and had sought information from support groups, the internet, books and medical journals. Several people said that if there was anything they particularly wanted to know they made a note and asked their doctor or specialist nurse next time they saw them. (See 'Getting the diagnosis of heart failure'.)
Mahendra’s information about heart failure and treatments available has come from medical leaflets and television documentaries.
No but I did read some of the leaflets when I go to hospitals and I do read some of them and that does sometimes. I’ve seen, you know, sometimes television programmes. They do help me because I watch a lot of programmes on Channel 4 sometimes they have ‘Embarrassing Bodies’ and sometimes they do teach you a few other things in life what you learn.
So one of the sources of information has been the television?
And the medical leaflets?
A nurse gave him a book about heart failure but he found it rather depressing.
So she said, 'How are you getting on with that book?' and I said, 'Not very well'. 'Why not?' I said, 'There are too many people dying'! And she said, 'Oh! I think I'd better take it back again'. But I don't really want to get heavily into books about medicine. I want a healthy interest in it, yes but not to become obsessive, no.
He does not want more information about his heart failure.
Some people wanted to find out as much as possible and used the internet and went to libraries. They described wanting to check up on the side effects of medication, to keep an eye on what was happening to them, and appreciated getting tips from other patients. One man had bought medical text books and said he thought he knew as much about heart failure as his GP; another person looked up his medication in the British National Formulary (a list of all the medicines which can be prescribed in the UK). One man explained that since all the information is out there on the internet, you'd be an 'idiot now if you don't want to look'. He pointed out that not even doctors could keep up and know everything.
He wants to know about his medications and consults the British National Formulary.
I mean it is fairly unusual, isn't it, to buy your own British National Formulary?
I didn't buy it, it was given to me, but anyhow. I find it fascinating and I'm interested. You know I read it up and I jolly well check the things I get given, I can assure you.
Do you find, I mean you mentioned you know, you don't want to become morbid about it, I mean some people might say that looking at the BNF is a morbid interest in your condition?
I don't think so. I don't think so. I mean I read 'The Spectator' magazine which is largely based on modern politics and everything, I don't regard that as morbid and I think politicians are the absolute end of the universe, but I still regard it as a thunderingly good read and a good magazine! I mean I don't sit there reading it every day and thumbing through it lovingly like a sort of family Bible or something like that, but I do find it quite interesting.
That's really all it is. It became a bit of a hobby because of all the stuff that was being shoved into me at various times. You know what I mean, what's this one? I mean why do they do that? Why not that one? Oh, I see, the side effects, yes, etc. So you link up all these things.
He finds the internet a helpful source of information.
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!
Unfortunately, not everyone who looked for information found what they wanted. A doctor, who described himself as a competent computer user, could not find an answer to his question in the British Medical Journal or on the internet. Another man said that he couldn't make sense of what he found. Some could not search the internet because they didn't own a computer, though one man said he knew he could use computers in his public library. Another said that his daughter had printed out information for him from American websites, including information about a book called 'Success with Heart Failure' which included accounts of how people of 'different ages and stages in their lives' had coped with heart failure.
He couldn't find an answer to his question about the ejection fraction test on the internet.
No, no I didn't really find answers to some of the questions I was looking for on the net, for example I... the ejection fraction test, I knew what my ejection fraction was but I didn't know what the norm was and when you're told your ejection faction is 25%, you know that in a sense that's a quarter of normal and I didn't think that could be right, but I actually had to ask my consultant what the 'normal' was and then he wouldn't give me a really clear answer because I think there are different definitions of 'normal', but the answer broadly was around 60% is normal, so 25% of 60 isn't too bad you know it's half, it's not a quarter! So you know I'm quite a sort of a competent internet user and I didn't find it terribly helpful.
He tried using the internet but found the information too technical.
I tried actually, looking, yes I did try looking for a heart thing because I wanted to find out what part of my heart wasn't working but I couldn't find it.
What did you look up?
See I'm not very clever on these, I mean my grandkids can show me more on this than I, I have to get them in when I want to do anything on this. But 'heart', you know look at heart and then search and then you get all these different lists and I just, heart failure, you have got heart failure and things like that on it and I've looked at that but I can't see what part of my heart they were talking about.
And they never really told me, only technical terms and you don't really understand the technical terms, you know what I mean? They just said it's part of your heart at the back and I looked on my notes to see if I could find out what it was and it was LV.
People also searched the internet to find out what it was like to live with a medical device. Angela was initially fitted with a pacemaker but her symptoms didn’t improve and she felt isolated. Through the Pacemaker forum – an online service - she realised her pacemakers wasnt working for her. She was later diagnosed with dyssynchrony (where different parts of the heart are not synchronised) and fitted with a Cardiac Resynchronisation Therapy (CRT) device.
Angela joined the Pacemaker club - an online forum for people living with pacemakers. The experiences of others helped her understand that the pacemaker wasn’t working for her.
Is it UK based or?
I don’t know if it’s UK or US based. As I say a lot of the membership is in the US but there’s also too quite a lot of English people there. And I’d say it’s quite good because I still don’t know anyone with a pacemaker. And as I say you go to the gym and the chap at the gym goes, and this is in a town, ‘No you’re the first one’. So you do feel quite isolated in just of how your experiencing. And people just write things and sometimes, you know, it’s how they are feeling or how they are getting on at work or sometimes as well we’ve gone back to the doctor and nothing has been done and then people who have got pacemakers for years and are quite experienced about this will talk about sort of adjusting the rate response. And there does seem to be, a picture emerges that doctors, the medical profession will often say, ‘The pacemaker is working fine and you’re not’. It’s like the old joke about the operation was a success but shouldn’t say it’s a joke. The operation was a success but the patient died. And pacemakers are a bit like that now that they are put in as a, ‘Well you’ve got a heart block we’ll put a pacemaker in and the pacemaker is working fine.’ And that, I think that was, was just the thing that has just been so upsetting is nobody would look at me and go, ‘But you’re not right are you? Ok lets’. I know I say nobody, my GP did, you know, my GP but they are just referring you through to the experts and when the experts are going, ‘Well your pacemaker is working fine.’
Last reviewed April 2016.
Last updated April 2016.