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Heart failure

Attitudes to medication for heart failure

People commonly said that they didn’t like having to take medicines to treat their heart failure but accepted that it was necessary or that it had improved their condition. Although many disliked having to take lots of pills every day most said they always took their medication no matter what and had never considered not taking it. Some didn’t like the idea of taking certain medicines because of the risk of side effects or complications.
 

Roger says that taking pills is inconvenient at times and a reminder of his condition but he recognises they are keeping him alive.

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Age at interview: 68
Sex: Male
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It is a bind, to be honest. Cos you can’t ever forget what, you know, what it’s for and that sort of thing. But, yeah. It’s an inconvenience at times, having to take them. But, I mean, it’s keeping me alive. So, it’s something you’ve got to get used to. Your life’s ruled by it. Without the tablets I don’t know where I’d be.
 

She has asked if she could stop taking some of her medicines because of their unwanted effects but has been told to stay on them forever.

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Age at interview: 69
Sex: Female
Age at diagnosis: 64
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Well the perindopril, the ACE-inhibitor, is the one I believe is causing the renal problem. I’d like not to take that, I don’t know why, it’s just a bit psychological I think. But I was told at one time that it stops the heart getting too big, so I mean you can’t stop taking it, and I have spoken to the cardiologist once or twice because most people - after four years you’ve been discharged from hospital but I still see a cardiologist every 6 months - and I have asked her at different times if I can stop taking this, that and the other, like the simvastatin you know, and she always says, ‘No, you’ve to stay on them for good’.
Taking tablets could be upsetting or depressing because it interfered with normal activities. One man said he had once or twice felt so angry at being dependent on drugs that he had thrown his pills across the room, and another said that he preferred not to take pills at lunchtime because he didn't want his life to become 'a pill-taking exercise'. One man said he didn’t like taking soluble aspirin because it gets stuck in his false teeth and he needs to flush his mouth with lots of water to get rid of it. Another objected to being prescribed a statin because his cholesterol level wasn’t particularly high since his diet excludes meat and dairy products, but said he takes the tablets sometimes to pacify his doctors.
 

Beth says that taking her medicines upsets her sometimes.

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Age at interview: 57
Sex: Female
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Yes. It does get me down taking all those medications, it really does upset me sometimes, especially if I’m feeling bit low and sorry for myself anyway. And then I get all the tablets out on the bench and I just get upset when it comes to taking them.
 

Explains that having to take drugs everyday has affected his quality of life.

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Age at interview: 47
Sex: Male
Age at diagnosis: 41
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'I just sort of see them standing there and smash, because that's it! That's my bacon and egg and cereals in the morning, and without those I don't live. So it's not a nice thought. I have to take these things. I suppose if I wanted to be philosophical about it, if you stopped eating food you'd die, so in a sense it's another form of food. But this is a special dish - this is cordon bleu! I mean it's a specialist dish which I have to have and I can only get it from one source.  

So you'd be knackered if the only source of food you can have came from the rain-forest because we don't have rain-forests here. So you'd have to go to Brazil or Australia and that's the only snag. I have to go to a chemist and I need a doctor's list, so it reduces my freedom, my quality of life, freedom. And..it is just a split-second thing sometimes, I just see them there, and it's like the enemy instead of my friend, I just smash them - let them know who's the boss, I'm the boss.  

Once or twice, this was going back a few years, I didn't take them at all. I actually got away with it for about a day. If I did that now, I'd be struggling after a day, I couldn't do it now, my heart just isn't that strong, it is very, very weak now. 

These feelings meant that some had been tempted to not take all their medicines but most recognised that it would be foolish to do that because they would become more ill and it would be unfair on those people who would have to deal with the consequences. However, others had deliberately missed doses of their medicine to see if it would have any effect on them.
 

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

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Age at interview: 49
Sex: Male
Age at diagnosis: 44
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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.
Another man didn’t take all his doses of statin or aspirin because he didn’t think he needed them, whereas he adheres religiously to his beta blocker dosages because he considers this medicine more important to his health. A woman who had been prescribed digitalis when she was young stopped taking this medicine when she moved area because she hadn’t been regularly monitored and didn’t see the need for it. A man had not taken all doses of his digoxin because it was inconvenient when working underground as a miner; his doctor noticed from the repeat prescriptions that the tablets were not being consumed at the proper rate, got angry and stopped the medicine altogether, but the man noticed little effect on his symptoms.
 
The need for supportive treatments such as an anti-depressant was sometimes queried and one man had weaned himself off them; Richard had refused to take them.
 

Richard was prescribed an anti-depressant but he chose not to take it.

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Age at interview: 70
Sex: Male
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My GP also prescribed for me tablets for somebody who is depressed. But I was very reluctant to take those. I didn’t want to become addicted to tablets for depression. And sometimes people say that tablets for depression can give you highs temporarily, and I didn’t want that high/low flicking, so I didn’t take the tablets for the depression and I agreed that with my GP. 
Most people said they always adhered to their medication regimen and had never considered not taking them, either because they were happy with their medication or because they trusted their doctor’s advice.
 

He says that individuals are free to decide for themselves but he always takes his medication because he trusts his doctors.

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Age at interview: 65
Sex: Male
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Had I ever thought of not taking my medicine? No I don’t think I have because as I mentioned on 2 or 3 occasions the medical profession, the medical people that I’ve been associated with that have helped me, having built up a personal relationship with them, therefore the trust that goes with that I never doubted for one minute that what I was being advised to take was the right thing to take. But having said that, I do feel that if any person on any, who is given any medication to take is perfectly at liberty to use their own minds as to whether to take it or not. But not just not to take it but to ask.

No but I asking, I really want to know what you feel about it. I mean when you had the side effect of loss of libido did it ever occur to you, ‘Right I’m going to stop taking that medicine’?

When, with regarding the libido problem, no I never gave a thought to not taking the medication. Yes I’d been offered alternatives but by the same token I was told they wouldn’t have been as effective as the ones that I’m already on. And no you, there’s no point in going to a solicitor and asking them to draw up a will if you don’t take any notice of it when you’re given it.

No, you go to the medical profession, you take their advice to heart, you do what they suggest – you don’t have to - but yes in my opinion you should. By all means query it as to why, the wherefores. 

 




Summary added in April 2016.
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