Ursula - Interview 10

Age at interview: 82

Age at diagnosis: 81

Brief Outline: Ursula took part in a screening programme for unrecognised heart valve disease in 2010. She was told she has a leaky valve, which left her feeling a bit anxious, and was invited to attend a second appointment. We spoke to Ursula after she attended each appointment.

Background: Ursula is retired from her job as a vacuum operator with a car component manufacturing company. She is widowed with one adult daughter.

More about me...

 Ursula was interviewed on two occasions during this study. The first interview took place in 2010 after she had been invited to be screened at her local health centre for unrecognised heart valve disease, as part of a research programme. She went along mainly thinking it would help other people if she took part in the research. She is normally fit and active, apart from occasional tiredness or shortage of breath, which she just puts down to old age.  She was not expecting anything to be wrong with her heart, so when she was told she had a leak in one heart valve it was quite a shock. 

 

At this time Ursula was not sure what the next steps would be and what this might mean for her. She would have liked more information about what it means to have a leaky valve and whether there is any action she should take, for example avoiding strenuous activity. At the time she was told the results she felt too shocked to think what questions to ask, but now she might go back to her GP for more information and advice. Ursula finds it worrying not knowing, not least because her husband died of heart problems.

 

Apart from the need for more information, she felt the initial screening appointment itself was very well-handled and efficient, and she was pleased that it could be in her local health centre. Even though she was worried about what might happen next, she is still pleased that she went along and would rather know if there is something wrong, even if there is little that can be done about it. Ursula thinks anything that may help other people is worth doing, and medical research needs more volunteers who think that way. 

 

We spoke to Ursula for a second time after she attended a further appointment, which took place at a hospital. She was able to use her bus pass to get to there. At this appointment she was told she had an ‘extra heartbeat’. She was unsure if she had always had this problem and wondered why it had never been discovered. She thought it may have developed since her initial appointment. 

 

Ursula spoke to her GP about the diagnoses she received as a result of the heart valve screening and he ‘didn’t seem to be unusually bothered by it’. She does not feel worried and takes ‘each day as it comes’. As something different was found at her second appointment, Ursula thinks that she might be invited to attend for another in the future. However, she has not been informed that this will happen, but said that she expects it to. 

 

Ursula described her overall experience of the screening process as positive. Despite being told that she had a leaky heart valve and an odd extra heart beat, she still thinks it is best to know if there is something wrong so that she can accept it and adapt to it.

 

Ursula did not remember being told there would be a follow up appointment, perhaps because she...

Would you have liked to have been given something to take away with you? some information?

 

I might have been happier had I been told what, how serious it is or how unimportant it is, because to me it seemed, although it was found, but nobody gave me any indication as to what I can or cannot do, avoid any strenuous exercise or work or anything like that. But, as I say, at the moment I’m just waiting to see what happens.

 

And you’re not sure yet whether they’re going to ask you to go back for another appointment?

 

No, up till now nobody has bothered, so I’m just wondering. I feel rather, a bit let down.

 

Can you remember her saying on the day that you went for the screening and giving you the results whether you would be asked for another appointment?

 

She may have done, I cannot remember. I was a little bit shocked to discover there was something wrong, but having said that, she may have said. I can’t remember.

 

I did receive a letter from...

 

From the screening programme?

 

Yes, from the screening program.

 

And what did you think about that letter?

 

Well, there again, it gave me some idea that there was in fact something wrong, but I am no judge of the seriousness of it. As I say, it may not be much, it may not be very serious, but not knowing, this is a bit of a worry.

 

Could they have done something to make that letter better? I mean, if they’d included a sort of a, a summary of it or something? Would that have helped?

 

Well they could have assured me, “There’s absolutely nothing to worry,” or given me advice as to what I can or cannot do, should avoid any strenuous exercise, any strenuous work, bending, stair-climbing or whatever, jogging.

 

Anything that could have an effect on the heart valve. 

At her follow up appointment Ursula learnt she had an irregular heartbeat. She wonders how...

And the latest one, it was discovered there was an odd extra heart beat and I think it was something else which seemed to have developed since my initial appointment. So I’m wondering how significant that is.

 

OK.

 

It’s not bothering me in any way because I don’t feel ill or anything, I don’t feel any different but I’m just wondering if there’s anything that could tell us about the progress,

 

And so do you think that the extra heart beat was something you didn’t have...?

 

I’m wondering if it was there all along…

 

Yeah.

 

...if it was, why was it not mentioned or diagnosed except at the last appointment.

 

And did you get any information about your condition?

 

Not necessarily, no, not really.

 

OK.

 

I was just told what I just said and that was it.

 

Yeah. And how did you feel about that?

 

I’m quite happy. As I say, it doesn’t hurt me or it doesn’t cause any problems. So now I’m here telling you all about it. There’s not much to tell because as I say I don’t feel any different. I feel quite happy. I’m quite able to do anything and everything I want. It doesn’t worry me personally, but if there is anything that can be gleaned from this then that will be helpful, if not to me then to somebody else perhaps. It will, may help you in your research.

 

OK.

 

Hopefully.

 

And were you given any treatment for the leaky valve or …

 

No, not at all.

 

… the heartbeat?

 

When I spoke to my doctor he didn’t seem to be unusually bothered by it.

 

Hmhm. OK. And did you speak to your GP after you had been to all these appointments?

 

Yes, yes.

 

Right. And did your GP already know about you having been to the screening?

 

I told him but I think that he has been informed. He is aware of it.

 

So I imagine he will keep on being informed.

 

OK. And has he told you that he’s going to keep an eye on you in the future because of your….

 

No, he hasn’t. As I say, he doesn’t seem to be unduly worried.

 

OK. OK. And so the day that you went for your appointment to the hospital, did you find it convenient to get there or …

 

No trouble at all. I can use the bus pass, I can get there provided the timing is right…

 

… it doesn’t cost me anything. 

Ursula is now 82 so the research is more likely to help others than herself. She was happy to...

Well, a few weeks ago, or a few months ago, I received a communication asking me if I were interested in a program about monitoring. And I thought it might be good idea. I had no idea I might need help, or anything was wrong. But in spite of everything I thought, “It can’t do any harm. It may do some good.” So an appointment was made and I went to this.

The nurse did the necessary…

 

Screening?

 

She did the test, and there she told me then that I seemed to have a slight problem. There appears to be a tear in a valve, in a heart valve. I had not been aware of any problem before, but this has left me rather wondering how serious it might be, or it might become. So when I’ve been asked, when I was asked to, if I would be prepared to take this further I’m quite happy to do so, if it helps. It may not help me, but it could possibly help in the research. So from now on I’m quite happy to help if I can.

 

When you got the letter asking you to go for screening, did you have to think very hard about whether you wanted to do it?

 

No, not at all. No, I’m quite happy to help.

 

Right. And were you thinking at the time that there might be any benefit in it for you, or were you mainly thinking, “Oh well, I’ll help somebody’s research”?

 

Precisely, it’s my idea. And I thought, “Well I’m now 82. It may help somebody else.”

 

So you weren’t expecting anything to be wrong?

 

No, I wasn’t. I wasn’t, I was totally unaware that anything could be wrong. I always felt quite fit and well. Although I had experienced slight out of breath and tiredness occasionally, but considering my age I accepted it. 

Ursula was worried about what the diagnosis meant. She would have liked more detailed information...

 Is there any family history of heart problems?

 

No, none at all.

 

No. And you don’t have high blood pressure or anything as …

 

No, no …

 

...far as you know?

 

...it’s never been diagnosed as high blood pressure. Always quite normal.

 

So when she said to you that there was something, was that a bit of a shock?

 

Well, of course it did make me worry, especially since I don’t really know how serious it is now, or how serious it could be in time to come. I’m not quite sure what I can or cannot do. I’m a very active person and one who likes to know beforehand.

 

So for you there are some questions here about what this really means. Did you get any information from them about what heart valve disease is?

 

No, I didn’t, and I didn’t ask either. I haven’t been back to the surgery since. And I did receive a, the notice officially of what was found at the time, but I haven’t taken any further steps.

 

Would you have liked to have been given something to take away with you, some information?

 

I might have been happier had I been told what, how serious it is or how unimportant it is, because to me it seemed, although it was found, but nobody gave me any indication as to what I can or cannot do, avoid any strenuous exercise or work or anything like that. But, as I say, at the moment I’m just waiting to see what happens.

 

And you’re not sure yet whether they’re going to ask you to go back for another appointment?

 

No, up till now nobody has bothered, so I’m just wondering. I feel rather, a bit let down.

Ursula is not affected by the condition and it has not changed her lifestyle at all.

And before you went for your follow up appointment were you worried about anything?

 

Not at all. Not at all.

 

And how do you feel now that you know that you have these problems?

 

Well, [sighs] I’ve lived a good life up till now and I see no reason why I can’t live a few more years. I don’t think it seems to be bothering me. I certainly don’t dwell on it.

 

I don’t dwell on anything, I’m not a hypochondriac. So, no I just take each day as it comes and make the most of it [chuckles].

 

And have you continued to do everything that you did you before all of this happened?

 

Absolutely. Absolutely.

 

So it hasn’t changed any of your activities?

 

Not at all. It has not changed my lifestyle at all. I’m still active and do everything I set myself to do.  

Ursula admires researchers for their dedication, and encourages other patients to give them all...

If you were giving a message to somebody else who was asked to join this heart valve screening program, what would you say to them? If they got a letter …

 

Oh, by all means go ahead. Oh, get it. If it’s offered, then why not? It’s bound to be beneficial, if only to put your mind at rest, if there’s nothing wrong. Can’t do any harm [laughs].

 

And what would you like to say to the sort of, the doctors and nurses running the programme, from your experience? What would your messages be for them?

 

I admire people like that. It takes something to do medical work in the first place, in my opinion. Not everybody could do it. And if they are interested, they’re usually dedicated people. And I think one should give them all the help one can. It’s bound to help somebody. I mean, there are people prepared to put themselves out and do things like this for other people. Well, in this present day and age, there’s not many people like that now, is there? [Laughs].

 

It is true that it gets harder to find …

 

Yes.

 

...volunteers for research.

 

Yes, volunteers, dedicated people, genuine people, not just who do it for the money.

 

I' Mm, yeah.

 

R' I think that’s the trouble, we’re too mercenary these days. Money means everything - but it doesn’t.

 

No.

 

Absolutely not.

 

And is there anything you’d want to say to them to, sort of things they could do to improve the experience? I mean, you know, summarising your views about the information and so on.

 

Well I think, be open with the people, put their mind at rest. If there’s anything, tell them that from the start. I know some people are different, they cannot take. But I’m sure whoever is in charge of this project will know what sort of person they’re dealing with, if the person is too anxious and cannot take the truth or, ask certain questions to find out what their views are before, if it’s bad news.

 

So to try to tailor the information you give, the amount and the detail.

 

Precisely, yes.

 

But in your case, you wanted more really?

 

I want to know everything [laughs].