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Heart failure

Heart transplants for people with heart failure

Having a heart transplant is one of the last forms of treatment available to those with heart failure. Generally it is only considered when all other forms of appropriate treatment including angioplasty and medication have been tried and failed.

We talked to people who had been assessed for heart transplant at specialist hospitals and had undergone tests. One was shocked to be told he was not fit enough to go through with the operation. 

 

Explains that possible recipients of donor hearts are kept apart.

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Age at interview: 49
Sex: Male
Age at diagnosis: 46
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Do you know other people who are waiting as well?

No.

There's no kindred spirit?

No, when you have the call, I mean and my last one which was quite recently... my co-ordinator said, 'You know the score, we will be calling in other people as well you know.' I was probably one of three or one of four, and that's good because as I got turned down I'm assuming that hopefully one of the other's hopefully got it. [Pause] but that's how it is and and when the transport comes they sort of say, 'Our time slot for arrival is X because so-and-so is arriving at Y, and so-and-so is arriving at W..', and so we don't all meet or see each other and we are totally in different places, families kept apart etc., you don't all really want to sit in the same room looking at each other saying okay 'eeney, meanie, mynie, mo...' That's how they do it and that's great.

 

Describes his response to finding his heart was not strong enough for a heart transplant.

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Age at interview: 47
Sex: Male
Age at diagnosis: 41
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Another option was to have a heart transplant. So we started looking at the option about having an operation, and I went for lots and lots of tests and many of the tests, I can't even remember most of the tests I had because I had so many. And one of them, there was a lumbar one to test, I remember that one, taking a marrow reading and they took that from the lumbar region and then they did a biopsy and they took a vast amount of x-rays. And in the end they decided that it wasn't a good..it wasn't a good idea to operate because they believed that just putting me on to a life support machine would kill me. Because all the pipes supplying the heart were also, in their view, possibly calcified and wouldn't be able to be connected to pipes and that's why they couldn't put me on a life support machine.

This is the problem with the system up there, they're not very precise in exactly what they say to you. They're not very good at communicating. It was one of the worst places I ever went for communications. And at the time I was taking warfarin, that would cause a problem, the calcification would cause a problem, there was a number of things that I can't remember now. Because to be honest, when you're sat in that little room and he walks in and he brings a nurse with him, I said to [wife] 'It's no good', cause as soon as I saw the nurse you observe the body language.

So I walked out of the place totally numb, dumbfounded and I think that was the worst thing my wife ever said at the time since we'd been married when we went outside, 'Don't worry, there's people worse off than you'. And I couldn't believe she'd said it. And I understood, I know what she meant because when we were there, there were people 10/12 years of age being pushed around in wheelchairs with the trolley following them with the oxygen. But your illness is relevant, it's your illness, it's your pain, it's your discomfort. You can't put yourself into the place of somebody who might be worse off than you. So although I can sympathise with them I still don't want to be like I am now. I'd like to have had a heart transplant. And I had this discussion with the consultant in as much as 'quality of life', because he once said, 'We'll take a chance and do the operation on you in the 11th hour or when your 'quality of life' is such that you've nothing to lose'.

Another man, still waiting for a transplant, said that his height (he is 6' 2”) as well as the anti-bodies in his blood group were making it more difficult for the hospital to find him a suitable donor heart. He talked about the difficulties of managing his own pain relief without taking too much morphine. Sometimes he said he felt hopeful about getting a donor heart but when he is feeling relatively well he has mixed feelings about putting himself through a transplant.

 

Explains that his height and antibodies have to be matched before he can have a heart transplant.

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Age at interview: 49
Sex: Male
Age at diagnosis: 46
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I went back in January for angioplasty and another examination on my heart because of the problems I was having with the pain and they thought maybe one of the stents was obstructed and it was, then actually in January, January 2nd of 2001, January 4th or early January 2001 they actually broke the news to me that on further examination that's when they realised the heart was absolutely finished, and that I would have to retire from my work and everything else and incapable of carrying on. 

By July that year, the deterioration was sufficient that [wife],  I was then transferred, sorry, I was then put on to [Hospital] Transplant Unit and by July that year they felt that I should really go on the transplant list and I have been on that since then, July 2001.

Because of the apparent problems I have, one being my height which... I'm nearly 6'2' and it would appear that you have to have... a donor heart from a similar statured person, so if you know any tall people around give me a call, and also I have some uncommon antibodies in my blood which they're having real problems matching as well so that's why I'm still waiting. They do say normally it's six to eight months, six to nine months before a transplant comes up. I've had two shouts in, where are we, July, May nearly two years, neither of which actually matched up on the antibodies so that's why we are where we are today. 

 

Describes his mixed feelings about having a heart transplant.

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Age at interview: 49
Sex: Male
Age at diagnosis: 46
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Oh yes that would be nice, oh yeah I'd certainly go for it!  That in itself, we have flipped the coin over that one a few times. There are times when I feel great, and when you're feeling great and somebody rings up and says, 'Oh we're going to go to theatre now and you're going to have a transplant', you think there is an element of risk in this transplant. (You see, it's not like having your tonsils out! Someone's going to take your heart out and stick it on the sideboard, put somebody else's in and then try and whack it and get it going again.) The coin is certainly in the air, all the way through the procedure, and you're not really sure if it's going to be head or tails. I think its, the odds are fairly good now I mean, it's getting more practice procedure but it's still no no solid event and when you're feeling good you think well do I really want to take that risk, because it is a risk... Even if you get through the procedure you've got to survive after it. One of my cardiologists said to me, 'All you've got to do, is survive till your transplant, survive the transplant, survive after the transplant for a few months and you're in with a chance'. And I thought, 'Get in there!', so I mean you know, you have to weigh this up when they say, 'Oh there's possibly a heart', and you feel great and..do I really want to go and do this? Other days I feel that dreadful, that it would be a gift you know if I had a transplant so [shrugs].

Several other people said that the possibility of a heart transcplant in future had been mentioned. For some this gave them hope for the future, though one man thought a transplant may put him at greater risk of dying. Most people who had talked to their doctors about having a transplant had been told either that they were too old or that their hearts wouldn't withstand the operation. Philip had been told a transplant would only be possible if he lost a certain amount of weight.

Paula, whose heart failure was caused by congenital heart disease, had previously been on a transplant list but subsequently taken off it when her condition improved. Daniel had initially been assessed for a transplant but his condition then improved. He has been told that a transplant is a likely option for him if he gets worse again but he would have to lose some weight and be well enough to withstand it. At age 38 he has mixed feelings about whether to have a new heart as it may not last for more than a few years.

 

Paula found it difficult to come to terms with being on a transplant list but although now off the list she would be prepared to have one if offered.

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Age at interview: 46
Sex: Female
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Two years ago I did get word that maybe I would be going on a transplant list, that would be the next step forward. Thankfully my health has picked up and I am not on a transplant list, but there is always that, it is a possibility further on in life, which at the time I couldn’t deal with. I don’t want anybody else’s heart, I’m happy with mine. My heart’s got me to 46 and I’m proud of that. I don’t want another one, I’m quite happy with that. So I did go through another emotional time; I had fantastic family who supported me, talked me through it all. Two years on, even though I'm not on a list, and it doesn’t look like I would, I don’t need a heart transplant in the near future, but I have got my head round it, and if that’s the case, yeah, bring it on, let’s go for it.

Oh okay so now you would be prepared to have…

I would now, yes, yeah, yeah. I didn’t agree with it, I’ve always been very, we are born individually with what we have and we should all be thankful of what we have. And I did find it very very difficult to comprehend having some, somebody else’s heart to keep me going, because as far as I was aware, and as far as I was concerned, my heart’s done me proud, and I would feel like I was letting it down. It probably sounds ridiculous but everybody has their own emotional ways of dealing with things. The family sat down, my three boys, my husband, we all sat down, had a discussion about it. They all put their points of view across and, to be fair, they were all right because I chose to get married, I chose to have a family, and as a mother and a wife, and now a grandmother, it’s my responsibility to keep me here as long as possible to look after them. And if that means I need a transplant, I need more operations, then so be it. So yeah I’ve, that’s all sorted and thankfully, like I say at the moment, I’m not needing a transplant and I’m not going on any list, so it’s just keep ticking over and keep looking after myself as best as I can and live my life to the full.
 

Daniel may be offered a transplant if his condition worsens but he is unsure about the balance between quantity and quality of life.

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Age at interview: 38
Sex: Male
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Well, initially when I came home, it took a good year to recover, to get myself back to being able to walk properly. And then ever since then, I've just kind of remained at one level, with, with having little dips in my health. But then I don't seem to get any better, or sort of any worse, as time is going on. They do tell me that I will have to have a heart transplant at some point, but it's just a matter of time before they, they make the decision for me to go on the list.

What will determine that, do you think?

Being well enough to have the operation and, and recover after. But also being ill enough to need the operation. 

That must be a very difficult balance.

It is. And I often think whether I'd want one now, because with having two small children, there's lots of things I'd like to be able to do with them. And I know a heart transplant would, you know, you can virtually have a, a normal life afterwards. And I'd be able to do the things I want to do with them, you know, kick a football around, and take them swimming and what have you. But they kind of only guarantee a heart transplant for ten years. I think that's something to do with the rejection therapy that you take. Although there are people who live a lot longer with them. So you, the balance for me is to think you live longer, or you have a, a better life now.

Mmm.

But it's not my decision, it's out of my hands.

Do you have any say in it? 

I don't know. I really don't know. I don't know if you get the choice to reject being put on the list or not. But I suppose if it's needed and they've decided, I would just go with it. 
 
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Thinks that having a heart transplant can be too risky if done too late.

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Age at interview: 39
Sex: Male
Age at diagnosis: 37
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I couldn't sit and say I deserve it ahead of him or her [laugh] you know, somebody now has to sit down and make that decision unfortunately, not a nice one to do but, somebody has to make that decision.

And course it may not work so why would you exchange at least what I've got now to dying shortly following a transplant. So it's not as if, I think some people have the wrong idea perhaps of transplants, oh it's okay I'll have a transplant it'll be all right. People still die with these things [laughs], you know, the improvement rate's improved, got a lot better but they still die with them.

Now okay, most of us maybe because they're very weak but it's like the chicken and egg situation, they've got to be weak, ill before they get onto it, and of course you then think, well they're too ill to go through it. Where as ideally if there were enough hearts you could probably do them a bit earlier, when they're stronger to get through the procedure and survive it.  


 

Last reviewed April 2016.
Last updated April 2016.

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