Merilyn - Interview 41

Age at interview: 57

Brief Outline: Merilyn took part in a randomised trial of different procedures for carrying out a heart bypass operation. She was in the group which had the new procedure.

Background: Merilyn is a cleaner. She is married with 3 adult children. Ethnic background/nationality' White British.

More about me...

Merilyn went to her GP because she was getting occasional chest pains. She was referred to her local hospital and then to a specialist hospital, where she was told she would need a heart operation, a coronary artery bypass graft. This came as a complete shock – apart from occasional chest pains she had not felt at all unwell or breathless, and had carried on working full-time. She was told the operation would be in 8-12 weeks time.

 

When Merilyn was admitted to hospital she was asked by a research nurse if she’d be willing to take part in a trial of different procedures for carrying out the operation. The operation was scheduled for the following day so there was little time to think about it, but she felt it all seemed straightforward and she was happy to take part. She got on well with the research nurse and thinks the way she communicated with her helped her feel confident about the trial. It was explained that in the standard procedure a vein is taken from the person’s leg or arm to use as part of the bypass graft. In the new procedure being tested, the surgeon uses an artery in the chest instead of the vein. Merilyn was told she would be allocated at random to one of these two procedures and would only know which when she woke up. She did not mind which group she was in, but thought it might be good to avoid having an additional scar on her leg or arm. A colleague had had a bypass and she had seen that he had quite a big scar on his leg, as well as a chest scar.

 

She discovered she was in the group having the new procedure. The operation was four years ago in 2004, and she feels very well, although it has taken her some time to get over the emotional shock of facing a life-threatening condition. Every year the research nurse rings her to ask some follow-up questions, particularly whether she has been smoking, and whether she has taken any time off work or visited the doctor. She is surprised they don’t ask her other lifestyle questions such as diet and weight. Merilyn has had quite intense pain and sensitivity around her chest scar, and is surprised this is not something that is followed up as part of the trial. She feels very conscious of the scar and wonders whether it is bigger and more painful than it would have been if she had had the standard procedure. She knows it is bigger than her colleague’s chest scar, but she also wonders whether being a woman affects how the surgery is done. She would have liked to meet other women who have had bypass surgery and talk to them about their experiences, but found the cardiac ward and cardiac rehabilitation programme very male-dominated.

 

Merliyn feels it has to be a personal decision whether to take part in a trial, but that medical progress can only be made if people volunteer to test new drugs and procedures.

 

Merilyn was quite pleased when she found out which type of by-pass surgery she had been allocated...

I actually went and had the bypass in November 2004. When I went into the ward, I was approached by one of the consultant’s nurses, who asked me if I’d be prepared to do a clinical trial. I didn’t really understand anything about it. It was called ART, Arterial Revascularisation Trial. And usually in a layman’s term what it meant was, the usual way of doing a bypass, they take veins from the leg or the arms and do the bypass with that. The actual ART trial meant that they didn’t do this. They actually took the arteries from your chest wall. And what it, what they explained to me was it would be done randomly. You might have it done that way or you might not, you wouldn’t know until you woke up. So it wasn’t until I woke up that I realised that I’d actually had the one, the arterial revascularisation. And it, when I had it all explained to me it sounded quite logical. It seemed that obviously an artery is bigger than a vein, and hopefully I might never need another bypass or I might, it might take me a long time to have another bypass. I’m crossing fingers [laughs]. I feel pretty good [laughs]. And as I said I’ve had this four years now. I’ve had no problems, no angina, I’ve had no time off of work and I feel great.

 

And when she explained to you that you would be put at random into either the group getting the vein from the leg or the trial--

 

Yeah.

 

--group, were you worried about that?

 

No, not at all. I just hoped I had the one from the chest, so I didn’t have another scar, because I knew I was going to have a big scar, but obviously the less scarring you’ve got the better, so I was pretty glad when I woke up to find out I’d had it done that way.

 

What do you think you’d have felt if you’d woken up and found it was the other way?

 

It wouldn’t have bothered me, no. I had to have it done. Obviously there was a problem, and I wanted to get the problem sorted out, so, no.

Merilyn gets on really well with the research nurse and feels comfortable talking to her. That...

I mean, how important do you think it was that you got on well with nurse? If she’d been somebody who wasn’t quite so personable, would that have made a difference to you, do you think, in terms of saying yes?

 

I probably would have given it a lot more thought, and it, you didn’t have a lot of time for thought, because I actually went in on the Monday morning and was having my operation on the Tuesday morning. So it wasn’t the sort of thing that someone approached you and you had a sort of a week or a couple of weeks to sort of think about it. So, it must help if you’re comfortable talking to somebody. If I wasn’t comfortable I, I’d probably, I don’t know, maybe I would’ve had to talk to somebody, I don’t know. But I felt very comfortable, and I thought myself it was a good idea, I didn’t have to discuss it with anybody.

 

What was particularly good about the way that she did it, do you think?

 

She’s probably done it to a lot of people. Obviously with anything if you do it enough, you get quite good at it, don’t you?

 

And if you were trying to pull out - because we use this site for medical training and nurse training - if there were some key things you’d try to pass on to student nurses about the way that she talked to you, what would you pick out?

 

I don’t know. I don’t suppose you can really teach somebody. It’s, [sighs] I don’t suppose you can really teach somebody how to put somebody else at ease. It comes with experience really. Well, yeah, it would come with experience, it’s not something you can teach somebody. The more, it’s like the more you do something the easier it gets, I would have thought.

 

Since the bypass surgery she has had pain for several years. She wonders whether it was because...

Where there any different side effects, as far as you’re aware, from having it done one way rather than the other, I mean apart from the scarring, obviously?

 

I’m not sure. I had quite a few problems, even now four years on. My, the skin around my, my scar is very, very sensitive, extremely sensitive, in fact I have to take painkillers for it, and this is four years on. Whether or not that’s because that’s the way I had the operation, I don’t know. I had a lot of problems earlier on with it. The, it was so sensitive, very, very sensitive. I couldn’t wear clothes like I’ve got on now anything that touched my skin, it was just, it was horrible. It wasn’t a pain, it was just sensitive, I didn’t want anything to touch my skin. It’s not too bad now. I think I’ve learnt to live with it now, because I was advised to wear clothes so that it sort of desensitised your skin, so that the nerves got used to something being on the skin. But I don’t know. I don’t know really.  

She has found it hard to deal with how the scar looks. She'd have liked to talk to other women...

I just, I felt that when I had my operation it was very difficult to talk to somebody. I had a lot of support from the family, but there was nobody actually who I could talk to who’d actually gone through what I’d gone through. I used to go on the web, everything. I tried everywhere to find a woman I could talk to, to find out how I was feeling, if they felt exactly the same. You know, did she - I couldn’t put a bikini on, not that [laughs] I’m a page three model. I’m not like that. But if I went into my bra and pants I had this awful twelve inch scar, which I have now, looking at me and it, and if you’re looking in the mirror you’re constantly, it’s a constant reminder what you had done. My husband said no, it doesn’t bother him, he doesn’t take a blind bit of notice, but he must do. It’s there, it - I see it, so [laughs] other people must see it. And obviously with a bloke, if a bloke gets a scar down his chest - big macho, this is good. It’s not the same for a woman. I found that hard to deal with. Not that I go about in flimsy stuff or anything like that. Even what I’ve got on now, I’m aware that this, I mean this is the good bit of my scar. Although people say to me, “God, that’s healed really, really well” I can still see it, it’s still a scar, and they don’t make me feel any better because I can still see it. They say to me, “Oh that’s, you can hardly see that”, but you can see it. It’s not a cleavage - because they muck about and say “God, you’ve got a really good cleavage.” It’s not a cleavage, it’s a scar [laughs]. So, and I’ve never met another woman that I can actually sit and have a conversation and say, “How did you feel when you had it done?” I suffered with a lot of psychological problems that really nobody could help me with. The hospital dismissed it with, “Well, you’re alive”, but that didn’t make me feel any better. I know that I’m alive, I had a problem and they sorted it out, but they left me with a - not the same as what I was.

 

Did you ask them if they could find anybody for you to talk to?

 

It was extremely difficult, they couldn’t find anybody either. It, every, this, this bypass business is very male-dominated. In the hospital the whole ward was men, in the cardiac rehab it was all men.

Merilyn would like to know how the trial is going, but she hasn't asked. She doesn't think she...

Did she or anybody since say to you whether they would in the long term let you know what the results of the trial have been?

 

No. [Laughs] I’m very tempted, every year that they ring me up I’m very tempted to say, “How’s it all going? Is everybody alive still?” It’s not the sort of thing you ask really [laughs], and they wouldn’t tell me if I did ask that, so I never ask it. But of course the trial goes on. I think I would probably ask that sort of thing at the end of the trial because it’s actually a ten-year trial and I’m only in the fourth year now, so it’s quite early on in the trial.

 

But as I say I get very tempted to ask [laughs].

 

And you’d like to know?

 

I would, I would, I would. Yeah,

 

But probably a few more years towards the end of the trial, because obviously four years is quite new.

 

Yep, yep, yep. But as far as you know there’s no formal arrangement to let you know at the end of the trial?

 

No.

 

It wasn’t something that was offered?

 

No, no.

 

Do you think it’s something that ought to be offered up front to people, that you’ll get the results of the whole trial later on?

 

I think it would be nice, but maybe somebody else wouldn’t want to know, but I think it would be nice for it to be offered if somebody, you know, does want to know.

 

So you could, like tick a box on the consent form or something?

 

Yeah, yeah.

Follow-up after the trial doesn't include questions about the surgical scar and post-operative...

Do they ask you anything about side effects?

 

No. Not at all. No, not at all, which I think is a bit strange.

 

So just remind me what kind of things they do ask you about when she calls.

 

They always ask me if I smoke, if I’ve carried on smoking. That’s one of the first questions, which I hasten to add I haven’t. I haven’t had a cigarette since before my operation. They ask me if I’ve visited the doctor, how many times I’ve visited the doctor in the last year, how much time I’ve had off of work. That’s really it, basically. I would have thought they would ask you about your weight for a start, and maybe your diet, because it must sort of attribute to it really, because the problems that you get with the bypass are not just smoking-related. It’s diet, it’s your lifestyle, stress, all sorts of different things. But they don’t really ask. I would have thought they would have asked me a lot more, a bigger picture of the lifestyle that I’ve got, but they don’t. I don’t know why.

 

Yes, it’s very interesting that they don’t ask about the scar--

 

Or if I’ve got any--

 

--pains or --

 

Yeah, no, they don’t ask. I did mention that once and she just said to me, “Well, you’ll have to go and see your doctor.” Because I did mention that early on in the trial, I said “Oh, my skin is just alive, it’s just on fire”, and she said, “I’d go to the doctor.” But I thought that they would ask that sort of thing, “Am I getting any problems?” They do ask me if I have suffered from angina, have I had any angina, which I hasten I haven’t.

 

No.

 

Not since before my op. So that’s a good thing.  

Being in a trial is a personal decision, but Merilyn encourages people to consider it. Medicine...

A trial is a very personal thing, I think. Some people would be quite positive like me, and would think, “Yeah, it’s going to be good for me, it’s going to be good for others.” Other people might be a bit dubious whether to go into that sort of thing. But I think if you sit back and think about it, that medicine has made such a progress over the years, and it’s only because the likes of people doing clinical trials, drug trials. You’ve got to practice on somebody, you’ve got to find these results from somebody, and the only way they can do it is to do these trials, so it can only be for the good of yourself and for other people.