Hugh - Interview 13

Age at interview: 68

Age at diagnosis: 68

Brief Outline: Hugh took part in screening for unrecognised heart valve disease. He was told that he had two leaky heart valves, but that it was not anything to worry about. He was invited to attend a follow up appointment. We spoke to Hugh after both of the appointments.

Background: Hugh is a painter and decorator. He is married with 3 grown-up children. Ethnic background/nationality' White British.

More about me...

In 2010 Hugh was invited to take part in a new research programme which is screening people for unrecognised heart valve disease. He decided to go, partly because there is quite a history of heart problems in his family. In the last few years he himself has twice been referred to hospital for suspected heart problems by two different GPs at his local surgery, but both times the tests have come back normal. On one occasion, the hospital told him he could stop taking some of the high blood pressure medication prescribed by his GP, but he felt concerned about that and rang the GP, who advised him to keep taking it.

 

Hugh has started to feel a bit more worried about his health as he gets older, and being diagnosed with a condition called Barrett’s Oesophagus has added to his sense of vulnerability. So he felt the opportunity to have a specific heart screening appointment would be valuable. During his first interview, which took place after his initial screening appointment, Hugh told us that he didn’t feel particularly anxious that anything might be wrong before attending for screening. Consequently, it was a bit of a surprise for him to be told he had two leaky valves. The person doing the screening reassured him it was not anything to be too worried about, and as far as he knows he is not expecting to need any further treatment. His wife is a doctor, so if he needs more information he usually asks her.

 

In some ways he is more worried about the implications of the Barrett’s Oesophagus than the heart valve problem. He is glad he went to the heart valve screening appointment, both for his own benefit and for any help the research may bring to others in future.

 

Hugh estimated that his follow-up appointment took place approximately four to five months after the initial screening. In his second interview he told us he was slightly worried during this time, but was well supported by his wife. He was pleased to have been offered the follow-up because of the history of heart problems in his family.

 

Hugh also recently found out that a friend of his is very ill with heart valve disease and this has made him ‘start to think a little bit more’ about his own heart. Knowing about his friend has made him keen to learn more about his condition. He would especially like to know ‘how long it would be before it really starts getting worse’, but acknowledges that this might be impossible to find out.  

The GP had referred Hugh to hospital twice for suspected heart problems, but nothing had been...

Well, when I went to the local health centre, the GP picked up that my heart, whatever you call it, line wasn’t normal. She didn’t think it was normal. So she got me to go to the hospital, and they put me through all these different tests, and at the end of it they said, “In our opinion you’ve got no problem.” And two, three years later I go to the health centre again, and the problem still seemed to be there. Different doctors. So they get me to go back to the hospital again, and they’ve reassured me again that in their opinion, there didn’t seem any problem, and told me that, they said that I could come off two of the tablets that I was taking. But then when I went back to the GP, he said, “No, I’d still carry on them”, and that’s the situation.

 

So this was all a while back now.

 

Yeah, I would say initially four years ago. And then this last one, two years ago.

 

And what was it that the GP had picked up? Did they do an ECG or something?

 

ECG. That’s, that was it. It was doing the ECG, whilst she was doing that, she went out of the room and had gone for ages, and I thought, “What’s going on?” Then she came back and said, “I’m not happy.” Although they now say it may have been there from day one.

 

And had you been feeling under the weather? Or why had you gone, or why did you go to your GP?

 

No, just I don’t know what it was. I think it was just one of the, that they were doing at that time, that they would like me in there and that’s when they picked it up. I’m saying not a lot, aren’t I? [Laughs].

 

Okay. So all of that had gone on. You’d kind of, they’d suspected there was something, nothing had been found twice.

 

Yeah.

 

So then this letter arrived, I gather, from--

 

From there, and I thought, “Well, maybe it’s good to be involved with it, really.” And, and that’s really why I responded. There’s, I’ve got quite a lot of history in the family, cousins and uncles, that have had - mainly the male section - have had heart problems. So I thought it would be a good thing to get involved in a survey and go deeper, and find out more, really. 

When he first got the invitation Hugh thought it must be something everyone was invited to, until...

So you got the information. You decided to go along. Were you surprised that it was going to be at the local health centre?

 

Well, I was. I didn’t, they hadn’t said anything there, and , but I thought it was just one of these surveys that was going round to every health centre, because you get these things that go round all - like screening - go off to different health centres and all that. I thought it was, just this was it. It was going to happen in most health centres. But I found out since that it isn’t that, is it?

 

No.

 

No.

 

This is the only place. That’s right.

 

That’s it, yeah.

 

Yeah, yeah. So was that, when you found out that it was the only place, what did you feel?

 

I thought it was a bonus, really, to be there and to be involved, and hence I’ve gone on further to this. 

Hugh was reassured that his heart valve problem was nothing serious and quite common at his age,...

I think you said to me you were you were able to see the picture on the screen.

 

Oh, I did that, yeah, after. She said, “I will be able to show you. Just let me carry on”, and then she put the computer in front of me and I saw everything in detail. And she went through all the different, “There’s the big one, there’s the--” and so on. I come home all excited [laughs] saying, “You’d better look after me. I’ve got a couple of leaks.”

 

[Laughs] And at what point did she tell you that she could see leaky valves? What it whilst she was doing it or was it afterwards?

 

That was--

 

Do you remember?

 

That was afterwards.

 

Ah ha.

 

Yeah.

 

And what--

 

When she was going through, you know, sort of, but she reiterated, kept saying, “There’s no problem. It is a thing with age.” So hopefully she’s right.

 

Yeah, and what were your thoughts when she said that to you and showed you the picture?

 

You know, with her saying, “Well, it’s, it happens with age” and all that, and I’m, what, sixty-nine, so I thought it was par for the course, as you might say.

 

But you did mention earlier that you found it quite frightening as well.

 

Oh, yeah. Well, you know, it’s when I started to think of my cousins and uncles and all that that have had heart, so that’s always in the background, I suppose, the heart. Although my daughter might argue the fact that stroke is worse than heart, but [laughs] for me within the family, being that there’s so many males in the family that have had heart problems - another uncle as well has had sort of like three, I think. So you start to think, could it be your turn? One died when he was fifty-four. So you start to think back, then, thinking, “Well, is it all in the family?”

 

Yeah.

 

With the other Barrett’s oesophagus I’ve got, it’s I know there’s a couple of nephews that have got it as well. So you start to tend to think it runs in, don’t you?

 

Were you anxious before you went? Had you been thinking, “Oh, gosh, I wonder if they’ll find something?” Or--

 

Not really, because I’ve always, I played a lot of football up until I was about forty, and I’ve always considered myself fairly fit, and I’ve always worked, and sometimes I was working seven days a week for years. And I still go loads, still do work now, still can go on long walks and feel okay. So I suppose I’m like everybody, we think we’re pretty immune from the [laughs] the big bang, as they say. So no, I didn’t worry. Maybe if I’d - I’ve often wondered how people who’ve had a heart attack, how they cope with life after. Do they push themselves, or? Like yesterday I worked really a sort of ten-hour day, because the people are away and I’m trying to get the job done before they come back, and I was told off when I got back here that I should be doing it less, gentle, but I feel I’m okay. 

Hugh doesn't like hospitals but given his family history he feels reassured that he's being...

And it was a morning appointment. Two young ladies and there weren’t anybody else, there didn’t seem to be like a waiting room or maybe enough for two people to sit in, one being seen and maybe one waiting like, you know.

 

And how did you feel about having to go to that hospital?

 

I’m, I’ve never been a great lover of hospitals even from a youngster. I had to go in when my sister was in hospital for a long time, about nine months. And I had to go more or less every other, or every week to see her. And it just sort of put me off really so, the shorter time I spend in them the better [chuckles].

 

And your first appointment was at a local health centre.

 

It was. It was, yeah.

 

And just how did you feel about those two different locations that you had to go to?

 

I didn’t mind because it, it was a with having a family with heart problems I was pleased to think that I could be kept a check on. And I found it very interesting looking at the, when they gave me the feedback to show me the actual leaks.

 

On the screen?

 

On the screen. And they just on, and then on, when I went to the second appointment they just confirmed, yes they are leaking but you’ve got no problems.

 

OK.

 

Really. It, well what they said is, it’s quite normal for a person of your age or fairly normal for somebody of your age to have these leaking valve things.  

Hugh wonders how long it would be before his condition needed treatment, if at all, and how that...

I’m, no, I’m sometimes intrigued really to in, ask, you know, how long will it take for them to get that bad where they’ve maybe got to do something about it. Because maybe they left it too long with my friend from Australia because now they’re saying he’s too weak to be operated on. So I just wonder whether there is a, somewhere along the line a cut off point where they might decide to do something, you know.

 

So with having these follow ups and stuff and hence it keeps the doctors I thought you would, they were doing this survey in all the practices but it was mainly in the, in the health centre where I am. And the feedback goes to the doctors there, doesn’t it? So…

 

I don’t know how they would whether they would say to or how long it would be before they decided to do anything, or if they decided to do anything at all.

 

And have they asked you to come back for another follow up?

 

No they haven’t.

 

OK. And…

 

No.

 

… was it discussed that you might be called back again?

 

Memory’s a great thing, isn’t it? [laughs].

 

[Laughs]

 

I think, I don’t think so. I don’t think they, there was any sort of mention.  

Hugh never used to worry about his health but now feels he has reached a 'vulnerable' stage in...

How do you sort of regard yourself as someone in relation to thinking about your health? Do you worry about it a lot, or do you not take that much interest?

 

No, I don’t. I’ve got Barrett’s oesophagus and so I’ve been going in for endoscopies and stuff like that, and so that started making me think, “Oh, you’re quite vulnerable.” I got that in my fifties, I think. And then a cousin had a massive heart attack. One of my uncles had a triple bypass. And I started to think, “Mm, you’re getting to the vulnerable maybe stages” and that. So that’s why I’ve, you know, got involved about it more.

 

So it’s that sort of family history in the background that’s--

 

That made me think. And yet all the time I’ve - even with the oesophagus, the GP said that he thought that it could have been there from day one. But the cousin, he’s sort of had no problem since. He’s fitted with a pacemaker. But it started me thinking, “Well, I’m his age, or maybe a year older, and it could happen to me.”

 

And what about other sort of health screening? Have you been for any other screening? Have you been invited for prostate screening or bowel screening, or anything like that?

 

No.

 

No.

 

Although the local GP, who’s now retired, he had had prostate cancer, so I have done the blood tests. They do that, I think I’m due again in June. So they keep an eye on that. But it was the fact that he had had prostate cancer, so once if a GP has had it he’s going to be on the ball with you on that, I suppose, isn’t he? And they’ve all come up natural. 

Taking part was reassuring, but Hugh still worries about what it means to live with two leaking...

And if someone else came to you and said, “I’ve been invited to take part in this screening and you’ve done it already. What would your advice be, or how would you describe it?” What would you tell them?

 

I would so just go for it and I’ve found it so easy, people are friendly. And I found it reassuring really. And the more people that go into it the more you’ll like to think that it will be enlightened up to more people and stuff like, you know.

 

And I suppose I would like to know, deep down I’d maybe like to know how long is acceptable to have a, a leaking valve, or two leaking valves [laughs] I suppose that would be more reassuring really.

 

But then I suppose they can only do that from numbers.

 

The more they know about it the more they will be able to inform you …

 

Yeah to …

 

about it?

 

...inform and that like, yeah.

 

And you don’t, I don’t know how long I’ve been living with it.