Cathy and Fraser - Interview 04

Age at interview: 68

Brief Outline:

Cathy and Fraser took part in screening for heart valve disease in 2009. Cathy learnt she had mild aortic regurgitation; Fraser's results were normal. (Cathy is developing memory problems, so Fraser fills in some details of her experience).

Background:

Cathy and Fraser are married with two grown-up children. Fraser is a retired scientist and Cathy is a retired teacher. Ethnic background/nationality' White British.

More about me...

Cathy got a letter from her GP saying she was invited to take part in a new research study looking at screening for unrecognised heart valve disease. Cathy’s mother died aged 58 from a heart attack, so she was particularly interested to have her heart checked, as well as curious about the research. Her husband Fraser was also in the right age group, so he volunteered too. As a scientist he is always interested in research, and knows it can be difficult to get enough volunteers.

 

They both found it a very easy and pleasant process, and felt the doctor doing the screening was very good and communicated well with both of them. Fraser would have liked to ask more questions about the ultrasound technology, but he had another appointment to go to. His results were normal, but Cathy was told she had ‘mild aortic regurgitation’. This means blood leaks back slightly through the valve in the aorta (the main artery from the heart), as the valve does not close properly.

 

Cathy was interviewed twice for this study. At the first interview, she was still waiting to hear when she would be invited for a follow-up appointment. She was not particularly worried to be told that she had a mild problem, and would rather know if there is something wrong than not know. However, she would have liked some written information to take away with her after the appointment, especially as she is developing memory problems, so written information would have reminded her what had been said. She and Fraser would also like to have a clearer idea of when her follow-up cardiology appointment would be. She has various medical problems, and uncertainty about when the next appointment will be with various different clinics makes it difficult for them to plan their lives. But they are very pleased with the care they have had, and happy to have been involved in the screening programme.

 

We interviewed Cathy again (with Fraser) after her follow-up appointment. She could not remember a great deal about it, but had been reassured that the heart valve problem was ‘trivial’. They found the whole experience of this second scan in hospital very smooth, efficient and reassuring. Compared to her other health problems, the heart valve is a very minor concern. 

 

Fraser and Cathy got a letter saying the research study needed a group of people to be screened....

Fraser' We simply got a letter from via the surgery saying, “We are the [name] Heart Valve Study and we want to recruit a group of people.” - I think it was 3,500, something like that - “just to follow them through and look at treatments for valvular heart disease. And would you like to volunteer?” And I think it was that we fell into the right age group. So we made an appointment and went down to the surgery.

 

Cathy' Yes, my mother died at the age of 58 of a heart attack with complications. She had cancer as well, but it was actually the heart attack that took her off. So I sort of felt rather as if I’d be very happy to join in this study. 

Fraser thought the information was clear about what was involved and what would happen if any...

And the information that you were sent before the screening programme to ask if you wanted to take part, did that say anything about the kind of conditions that they were looking for?

 

Fraser' I don’t think so. I think that was just very simple and straightforward. I mean, at that, at that time, if I remember correctly, what it said was, “We’re going to study the, how effective are the various treatment pathways for valvular heart disease. And we want to identify a group of people, characterise them, and then follow them over a period of years.” And that’s simple and straightforward. There’s no mystique there. It’s not until you get to the second stage that you start to get out the medical details.

 

It says what’s the purpose of the study, and it describes visit 1 and what are the possible results from visit 1. And it says that the results from visit 1 will be assessed by experts and then there will be two possible outcomes. One is a suspected valvular problem. About 1 in 10 people will be asked for a follow-up and will, and the patient will be notified immediately of the results. And those people would be invited to a second visit. But 9 out of 10 people would be diagnosed as “no valvular problems” and there would be no immediate follow-up. So it’s, it’s all here.

 

But it doesn’t go into, you know, mild aortic regurgitation or?

 

Cathy' No, or what it is, no, or how you would know whether you had it.

 

Fraser' No.

 

Cathy' Or whether it was just wind.

 

Fraser' But there is a description of what would happen on the second visit. 

Cathy and Fraser took part because they were curious, and Fraser is keen on science. Cathy was...

And when you got the invitation letter, what were you thinking about why you might take part? Was it mainly to do with your own family history?

 

Cathy' Yes, I think so. And curiosity.

 

Fraser' I’m afraid I’m, with a technical background, I’m just the sort of person who will always put their hand up for that sort of study or, you know, if somebody’s collecting statistics or something like that. It was the way I worked, so I’m, you know, an early volunteer.

 

Cathy' Well, I’ve always just been curious, so, yes.

 

And the curiousness was about your own health, really, rather than the research?

 

Cathy' No, I’m just generally curious - yes, as well. I mean, yes, in this case my own situation did play a small part. But on the whole it was just curious, that’s all. I, just think, because I have no scientific background whatsoever, I’m constantly amazed, delighted, horrified, you know - delete as appropriate. 

One research study Fraser has joined is comparing examples of his written work going back over...

Fraser' I can’t remember what the title of that particular project is, but what it is doing is looking at people’s writing over a long period of time. And it so happens because of my profession, and then because of my hobbies, that I have been writing - I first started writing, I suppose the first thing I really wrote was my PhD thesis, which was in 1964, and then you get technical papers which follow from that, and in the course of my career I’ve got technical papers in the open literature in my research field. And then because we were sailors for many, many years, you join sailing clubs. And boats are a bit like cars. You know, you might be a member of the Morris Minor association, or the VW Camper association, or something like that. And you write up your experiences of where you’ve been, and what you’ve done, and technical problems that you’ve bumped into with the boat, and how you tackled them. So here and there over the last, what is it? It’s now--

 

Cathy' Forty.

 

Fraser' forty-six years, I have been writing articles of one sort or another. And the early technical ones, of course, are in the open literature. But the later ones, over the last ten, fifteen years, are on my computer. So it’s very easy just to, you know, send off an email with all these files attached and say, “Well, here you are. That’s...”

 

Cathy' And they go, “Gulp.”

 

Fraser' [laughs] 

Fraser did not have to wait long for the appointment. He describes the tests and scan, for which...

I think she was running about ten minutes late. And I had the 11.30 appointment and I was going to a gym class at 12.30, which was why I was slightly pressed for time. But I went down to the surgery, sat in the waiting room, was called in. It was a single room. There wasn’t anybody else there. It was a lady doctor, who said she was in charge of the medical side of that particular bit of the data gathering. I guess she was sort of mid 30s or something like that. And she took some initial tests. I think she took a blood pressure. She took a pulse rate [laughs], because I can remember I was struggling with the mental arithmetic of multiplying the pulse rate up by four to, to get [laughs] the beats per minute, and we had a laugh over that. And then, you know, take your shirt off, lie on the couch. And she had a screen, a sort of a laptop screen, and as she ran the probe over my chest, I could see sort of images that were coming up. And she was obviously going through some sort of schedule of various recordings in different places. And then turn round or turn over and, you know, do it from 90 degrees round. And, and that was it. I, I think the sort of slightly messy bit was probably about 15 minutes, you know, and “Here’s a bunch of paper towels, scrub the, the jelly off”, and, you know, off I went. She said, “I’ll write to you in five years’ time.” [Laughs]. And I mean, that was it then. Simple and straightforward. 

Cathy had had a few 'twinges' and so she had wondered if she might have something wrong.

Do you think you were both expecting everything to be normal?

 

Cathy' I wasn’t sure. I’ve had the odd sort of twinge and things like that. And you sort of think, “Oh, that’s quite normal. It’s probably wind.” But because I’m getting older, and I suppose there’s something that rattles around in the back of the mind, I thought I was quite happy to have this check done. Mm. I mean, you know, I’m sure people do get twinges. But I haven’t had them before. So.

 

So when she said she could see something and showed you the dark spot, you weren’t that surprised?

 

Cathy' I think it reinforced the fact that I was aware of the twinges and thinking, “I wonder if it is wind?” [Laughs]. But that’s all. I mean I hadn’t mentioned it to Fraser. 

Cathy would have liked some written information to take with her after the appointment to...

Fraser' I can guess from a layman’s point of view what it means. But I have no idea whatsoever. I haven’t looked at that yet. I shall go and Google it later.

 

Cathy' I was going to say, one will Google it, yes. If I could have remembered what it was called I would have Googled it yesterday, because I was thinking about it yesterday. But I might not have understood what it said anyway, but it would have, there would have been bits of it that I could.

 

Fraser' My guess is that one of the valves is not closing properly and there is a bit of reflux.

 

Would you have liked more information to be given to you at the time, when this result was given to you?

 

Cathy' I think some literature would have been helpful, so that I could go away and read it in my own time and discuss it with Fraser, since he was having the same thing as well, and get more out of it probably, more understanding out of it, I should say. But I sort of felt, “Well, there’s going to be an opportunity to talk about it with somebody anyway.” So I wasn’t too worried. I just prefer to be well primed really, I think. And then I can forget [laughs].

 

So at the moment you don’t know whether this is something that might need treatment, whether that’s tablets or surgery or anything?

 

Cathy' No, I don’t know that, yes. So I’m, the mind’s in limbo there. It won’t start to click in until I discover what I need to worry about [laughs]. So yes.

 

I know talking to some people who’ve been through the screening programme that you get told at the appointment if they can see something. But then they also send a, a sheet of results. Have you had a written sheet through?

 

Cathy' I don’t recall seeing anything written at all since my appointment, really.

 

Fraser' No, no. I’m trying to remember why we know, or why I can remember that you have mild aortic regurgitation. 

Cathy and Fraser were not sure when her follow up appointment would be. It would have helped to...

Cathy' I think if there were a pamphlet or a booklet or something that I could take home and look at, that would be helpful. But the person-to-person parts of it were absolutely fine. No problems there at all. Very pleasant. It wasn’t, it was not in any way an unpleasant action, activity.

 

Fraser' I’d second that. I think the, the process itself was fine. I, I wouldn’t place so much importance on a pamphlet, because if I want to find out about something, being a geeky sort of person, I would go and look on the Internet. And I’m probably one of, becoming one of those people who is a pain to the doctor, because I go in [laughs] and sort of say, you know, “I think it’s this” or, “I think it’s that.”

 

The one thing that I think would be helpful to us is that having picked up Cathy as a person that they want to follow through, it would be nice to have some kind of feel for the timescale of that. We assume that since we’re now two and a half months or thereabouts downstream that there is no pressing urgency there. But, you know, are we talking about a week, a month, six months, something like that? And actually that knocks on to other experiences that we have, because this is not the only point of medical contact we have with the hospital system. And that is that timescales are firstly very drawn out, and secondly very indefinite. You really don’t know when anything is going to happen at all. And I mean it’s assumed that since you’re retired you actually don’t have anything to do. But that’s not true at all, you know. 

Looking back, Cathy wasn't much worried by the wait because she knew the condition was minor, but...

So I guess the first thing is to, is to sort think about that waiting time, and how long you had to wait, and what it was like waiting.

 

Cathy' It wasn’t a problem at all, because they made it fairly obvious that it was very minor. So it was nothing in particular to worry about. I mean, it’s the wee small hours when things sort of catch up with you a little bit, and I was sort of listening to my own heartbeat and thinking, “Well, come on, you can do better than that.” [Laughs]. But, you know, I mean it’s not a worry because they were very relaxed about telling me. I mean, they treated it beautifully. There was no sort of, “Oh, dear, we had better do...” or fuss, fuss, palaver. Nothing like that. It was totally professional and smooth, and quite reassuring, “You have this little problem.” Okay, other people have other problems. That’s mine.

 

And can you remember how, how long it was?

 

Cathy' Not a clue. I can’t tell you that at all, I’m sorry [laughs]. 

Fraser has had prostate cancer screening, but he knows that the results can be hard to interpret....

Fraser' Yes, it’s not so much screening, it’s just that if there is a problem, then, you know, it makes sense to go and --

 

Cathy' Go and get it fixed, if it can be fixed.

 

Fraser' -- go and talk to the medics and see what they say.

 

That’s quite an important issue about getting it fixed, if it can be fixed. And as you may know there’s quite a lot of controversy about prostate screening--

 

Fraser' Mm.

 

--because it’s unclear what is the best treatment. Or none at all might, might even be the best thing. Have you had the PSA, the prostate specific antigen?

 

Fraser' I did actually, because very sadly we lost a close friend through that. And you get to that sort of age where these sorts of things happen, happen to some of your contemporaries. And while you can stop smoking and take exercise, there are some things that you can’t control. And, yes, I had a PSA test done and looked at it. And my doctor was very good. You know, he sort of said, “Well, what will you do with the number?” And I’d already thought that through. So, and there had been discussions around, again with numbers of our contemporaries, you know, that, “What are you going to have tested? And then what will you do with the result?” So, fortunately my, my result was very low, so that’s fine. But, yes, there are issues with screening and especially, you know, with the numbers of false positives. And do you end up then getting treatment for something which actually isn’t a problem? And, you know, there’s a whole mare’s nest in there.

 

Yeah, I mean, which is why I suppose it would be interesting to know what they tell you about the, the heart condition and whether there is any --

 

Cathy' Yes, it will.

 

-- treatment for that.

 

Fraser' Yes, that’s right. And we’re both on statins because we have mildly elevated cholesterol. And of course you only have to put statins into Google and, you know, you’re--

 

Cathy' Yes, you’re doomed.

 

Fraser' --you’re deluged with information, both pro and con, you know, as to whether it’s the pharmaceutical industry making vast profits because they want everyone, the whole population to go on statins, or whether statins really genuinely do reduce the incidence of strokes and cardiac events, or - and whether or not they have side effects like muscle pains and memory loss and all of these other things. And it’s very, very hard for the layman to unpick that. Because once you set up a mechanism for bulletin boards where people can post their, you know, their experiences on the Internet, you’ve only got somebody to go out and say, “I started statins last week, and today I tripped over the kerb coming out of the supermarket. So I think statins are bad.” And, you know, there’s a huge amount [laughs] of that sort of correspondence which you have to wade through if you, and be careful about it. 

Cathy and Fraser say they don't worry about their health, but they are conscious of it and try to...

Would you regard yourselves as people who are normally quite interested in your health? Do you worry about your health?

 

Cathy' Not worry, but, so much as try and make sure we’re fit. I mean Fraser goes to a gym three, four times a week. And it’s a regular thing. He just does it.

 

Fraser' Yes, yes, yes.

 

Cathy' I have a physiotherapist to whom I go regularly, and I have a, an exercise regime, which I do at home.

 

Fraser' Cathy has a lumbar scoliosis as well as arthritis.

 

Cathy' Oh, well, I’m just falling apart.

 

Fraser' I’m going to hire her out as a study project for medical schools. But --

 

Cathy' It could be quite useful for somebody [laughs].

 

Fraser' Yes, yes. But I don’t think we worry about our health, but we are very conscious of our health.

 

Cathy' Well, it keeps digging you in the ribs, doesn’t it? The wretched thing [laughs].

 

Fraser' Yes, yes. We’re nearly 70 and so, you know, we consciously try to have a healthy diet and take exercise. We managed to give up smoking thirty years ago and that sort of thing. So we, we are very health-conscious but I hope not hypochondriac.

 

Cathy' No.

 

Have you been for other kinds of screening tests?

 

Cathy' Ah, well, I have a gynaecological problem as well as everything else, so I’ve had tests as well [laughs].

 

And mammography, do you go for the breast screening?

 

Cathy' Yes, yes, yes. I had one, and I’ve just had a clear, a letter back saying it’s clear. So that’s one thing that I can forget about. Good. But otherwise, yes, I mean, I do as I’m told, medically speaking.