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Kidney health

How did people find out about their mild kidney impairment?

We asked people how they had found out that their kidney function was below normal. The people we talked to had been diagnosed with a mild kidney impairment for different lengths of time, ranging from just a few weeks to 20 years or more. Jackie has always known about her kidney damage. Her kidneys were damaged in childhood as a result of repeated kidney infections, so she has needed to take tablets to lower her blood pressure since the age of 10. Robert, now aged 70, found out about his kidney impairment in his late forties after being diagnosed with high blood pressure. Jill, aged 77, learned only very recently that her kidney function was decreased after her GP did a general check-up testing her liver, kidneys and cholesterol.
 

Bill was first told 12 years ago that his kidneys weren’t working properly; although he has regular blood tests for his diabetes, his kidney function hasn’t been mentioned again until recently.

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Age at interview: 71
Sex: Male
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Now I'd like to ask you a few more specific questions around kidneys and kidney function.

Yeah

So, just tell me please in as much detail as you can remember exactly when kidneys were first mentioned by your GP…

Phew [exhales]

…and what they told you, what tests you had, what explanations you were given.

I really I can't remember …the first time they told me. It must have been quite a long time ago; …it must have been about twelve years ago or something like that I would think. And they just told me that my kidneys- my kidneys weren’t functioning properly and I went back, had more blood tests and when I rung up to find out about the blood tests they said, "Oh it’s - everything's fine," and… everything's been OK until this last time when I've had to go back again and have the, you know, have another blood test done. …And now I'm just waiting for the results of that.

So… I don’t…as I said I don’t really know, nobody's ever explained to me what is really wrong.

So when, twelve years ago, you were told “they're not working properly”, can you remember who told you?

My doctor, my doctor. Because then at one time we used to go and see the diabetic…we used to go and have our bloods done, then we used to see a diabetic nurse which checked, and then we'd have to go and see the doctor.

And the doctor told me then that… my kidneys weren’t functioning proper.

Do you- can you remember at all what kind of questions you asked at the time?

I really don’t think I asked any questions about it because I wasn’t – I wasn’t too sure what it was all about.

[laughs] And what happened next then – did you have further tests?

I- Sort of - I just went back and had my… every six months I go and have the tests done – my blood sugars done – and they tell me then whether it's…if there's- and, you know, they never said anything about it again after that until this time.

Was it the same doctor you saw afterwards who then said “everything's fine”.

Usually yeah, yeah, yeah.
 
 

Gerald was referred to the renal clinic three years ago after his GP found raised creatinine levels. However, his kidney impairment has caused slight concern over the last 5 months because it may affect which treatment he can have for his angina.

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Age at interview: 79
Sex: Male
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I didn’t know I had a kidney problem until… because of my heart attack nineteen years ago I was having a check-up every three months, and they were taking my blood pressure and a blood test. And it was during the blood test that my GP said to me that my creatinine levels were higher, not terribly high but higher than they should be. And he did explain that really- because I was - I taught PE and games and was reasonably fit – my muscle bulk was bigger than average for my size which meant my creatinine levels would be higher anyway than the average person. …And that was the position and he said obviously I had a bit of kidney problem and as a result I was advised then to go up to the renal clinic.

So I didn’t have any real treatment for my kidneys and then the… I didn’t have any problem until I had started… this angina started five months ago and as a result of that they told me that my right kidney isn’t functioning as well as it should.

And it's only this last few months, since the problems has really emerged as far as I'm concerned because of my heart problems and now linked to my kidney problem that I've really been aware of it and …not- not worried about it but it’s just a slight concern and the concern's only arose because of it's had an effect on my treatment, heart treatment, for my heart condition.
 
A mild kidney impairment does not usually cause symptoms, so a decrease in kidney function is often only picked up because people have routine check-ups or investigations for other problems. Many people we talked to attended regular check-ups with their doctor or nurse for other health conditions such as diabetes, heart disease or high blood pressure. Bill’s GP told him during one of his diabetes check-up appointments five years ago that his kidney function was ‘borderline’ but did not explain anything else about it. Martin, who had Non-Hodgkin’s Lymphoma in 2009, had his kidney impairment diagnosed during his annual review with the specialist oncology team. Peter’s decrease in kidney function was detected because he had frequent blood tests in the weeks and months following a heart attack.
 

Eric’s kidney impairment was detected through a kidney scan as part of hospital investigations into the cause of his anaemia. He found out about it when he received a copy of the consultant’s letter to his GP.

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Age at interview: 79
Sex: Male
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Whilst being investigated for anaemia I had an ultrasound scan of my kidneys in June 2008. As a result of that scan whilst seeing a specialist at the chest clinic in… his report indicated that I had chronic kidney disease stage 3A. My GP obviously picked this up when the report was sent to her and since then I've had six-monthly blood tests and the results have varied, not considerably, but there has been some variations in the readings which indicate how my kidneys are working. I have never had any problem with my waterworks and if somebody hadn't told me that I'd got chronic kidney disease I wouldn't know - I get no effects at all of what is happening to my kidneys.
 

Kath found out that her kidney function had been damaged by the diclofenac she had been prescribed for her rheumatoid arthritis when she was in hospital for a hip replacement.

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Age at interview: 72
Sex: Female
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Well, because of my arthritis, I was on anti-inflammatories, which are by far the best thing for arthritis. And when I went into hospital to have my second hip operation in 2006, when I came round from the operation, I had a catheter in and I’d never had a catheter in before. So I immediately said, you know, “Why have I got a catheter?” And they said, “Well, we’re just testing your urine output.” And then they came back the next day and said, “You mustn’t take anti-inflammatories again because they have damaged your kidneys.” So, ever since then, I’ve not been on anti-inflammatories, apart from a very brief spell a few, well, only a couple of months ago, when I had a really bad flare-up and my left shoulder was excruciatingly painful. And the doctor put me on anti-inflammatories just for a fortnight, just short-term, to try and kick my shoulder back into proper action. And that helped immensely. But otherwise, I’m not supposed to take them at all.

I knew that anti-inflammatories were always a bit dicey because my mother was on them and she had trouble with her stomach and they had to take her off anti-inflammatories. So I knew there was a slight risk with them but I, it was the first I heard that they could cause damage to your kidneys. I didn’t know that before.
 
 

Martin has comprehensive tests every year as part of the after-care for his Non-Hodgkin’s Lymphoma. Last year the oncology team told him he had a decrease in his kidney function but did not seem concerned about it.

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Age at interview: 70
Sex: Male
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Tell me when were kidneys first mentioned to you and by whom?

Well, it’s about a year ago I guess. I think it may have just been flagged up with the… Non-Hodgkin’s lymphoma team. I think it was just mentioned, you know, “oh, your kidney function is a little bit on the low side”, something like that. They weren’t concerned about it.

And didn’t say anything about going to see your GP. But then I mean he’s got access as well to the results of the blood test and it was… probably about six months ago that he mentioned it, you know, that… there was some… you know, just an issue over the readings.

You know, it’s just, it’s marginal.

And what were your concerns or questions at the time? When that was mentioned to you, what did you want to know about it?

I wasn’t really that concerned because nobody seemed to have regarded it as an issue. The rheumatologist didn’t, but there again, that maybe because she’s looking for other factors. And the Non-Hodgkin’s lymphoma people they’ve never really mentioned it, just acknowledging that… it flagged on the, you know, on the on the list of, because it’s not just the kidney test they do. They do like a full blood count, liver function, various other tests.

And kidney function is just one of the tests. And they just said in passing, “Oh, you know, your kidney function is just a little bit on the low side.” But no one has made an issue about it and it’s only recently, with my GP really, that he has sort of… pointed out like what the figures relate to.

And what the future might have in store.
 
Even though people with early stage chronic kidney disease do not usually have symptoms, kidney function can be seen as a ‘barometer’ of a person’s overall health and well-being. A few people we spoke to had found out about their kidney impairment as a direct result of consulting their doctor because they had been feeling unwell. Lesley consulted her GP because her legs were swollen. He prescribed her a diuretic (water tablet) and ordered blood tests. A few weeks later she received a letter informing her that she had early stage chronic kidney disease. John X felt run down after separating from his wife and was concerned about the health impact of his drinking. His GP tested his liver and kidney function and found that both were reduced. Pat consulted her GP with multiple health problems but was particularly concerned about swelling in her legs and yellowing of the whites in her eyes. One of the conditions she was diagnosed with was reduced kidney function.
 

Laura consulted her GP because she experienced intermittent headaches. Tests showed she had high blood pressure and reduced kidney function. She is glad her impairment was discovered early and has remained stable since.

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Age at interview: 60
Sex: Female
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Okay well I think what happened was basically I was getting headaches. And I’d had headaches for, well they were sort of mild in the morning and then they got worse through the day and I didn’t know what they were. And I had them for about a year, maybe even longer, and I kept trying different things , like I wondered if it was certain foods or was it because I was sleeping near an electricity switch, all sorts of things, and eventually I went to my doctor. And then they put me on a 24 hour blood pressure machine. And that’s when my kidney disease was discovered.

I’m very lucky really because lots of people don't get their kidney disease discovered until they fail or until they’re very near failure. I was at 50% kidney function when I was discovered and I’m only a little bit worse than that now. That was 16 or 17 years ago that it was first discovered. So yes I think, I think I haven’t failed partly because it was discovered early and that they could they could treat me.
 
 

Pat has ongoing investigations to detect the causes of her multiple health problems. Her GP ordered monthly blood tests after she consulted about yellowing of the whites in her eyes.

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Age at interview: 62
Sex: Female
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It was a routine check-up. Oh no the other… I don’t… Oh yes it got nothing to do with it I don’t think. I did ask about the yellowness of my eyes.

The whites of your eyes?

And I asked about that on this particular occasion when I was there. I said, "My eyes… whites of my eyes have gone yellow." …Whether that had anything to do with the blood tests I had done I don’t know. Anyway I had these blood tests and that’s when… one doctor said… I had a little problem so I went back to the doctor that sent me for it anyway and he said my kidneys weren’t functioning properly. So he said, "What we've got to do is keep an eye on them… and so every month you have blood tests to make sure that they're functioning."

And I don’t know whether anybody's followed-up on that, I don’t know. So in all fairness, like I said, you get five minutes…you ain’t got time to ask all these questions – “what about my kidneys, are they OK now?”…Nobody's saying.

But ever since last year then – so this was last…?

I had…it must have been in about the February because I- I had blood tests done every month. I had a long list of them to go in and I- the last one I've had was October I think yeah.
 
A few people we talked to had learned about their kidney impairment because their GP had called them in to review or adjust medication they were taking for other health problems. Certain medications will require the people who take them to have regular blood tests to ensure that they are receiving the correct dosage and that possible side effects are detected early (see also ‘Controlling blood pressure’). David’s GP called him in to test his kidney function after the Department of Health issued a directive on the use of diclofenac (‘Voltarol’) cautioning about its possible side effects on kidney health. Joanne and Simon both had a decrease in kidney function detected by routine blood tests they were having as part of taking lithium for bipolar disease.
 

Simon found out that his kidney function was decreased when his GP asked to see him for a medication review. He has since reduced the amount of lithium he takes for his bipolar disorder.

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Age at interview: 56
Sex: Male
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So tell me again how the subject of your kidney function first came up and?

Well, I made a, no, I was called in to my, where we used to live, at the health centre, the doctor called me in and said he wanted to talk to me about, you know, one or two health issues. I’m not sure whether he specified what they were on the phone but I said, “Okay, well, what’s all this about?” And he said, you know, it’s, I really can’t remember exactly what he said but it was along the lines of isn’t it time a lot of this was reviewed, full stop. Because, besides all the heart stuff that I’d had last year and the lithium, bipolar, alongside of that, all this time I’ve had high blood pressure, and they were monitoring that as well and so I’m, presumably, they just did a bit of a screen and there it was, let’s have a look at this.

But, as I said, you know, in my mind, for many, many years, lithium equalled stability and, for that reason, I didn’t interfere with it, neither did any of the GPs that I saw, you know. They, “Oh, you’ve done really well. You’re happy”, and everything else. I did, obviously, have to take blood tests but they were blood tests and, “Oh, your blood tests have come back all right.” That’s all you need to know, isn’t it, at the time. You’re not really going to go into the nitty gritty of it. But when somebody says to you - this is when I was about forty odd, you know - “This isn’t going to do your kidneys much good if you keep at it”, and there are other medications available now. I thought, you know, that was the time that I had a big, big rethink about it and I think it’s worked out okay.
 
Not everyone could recall a clear-cut ‘diagnostic moment’ when their doctor had explicitly told them that they had a kidney impairment, though they sometimes remembered that kidney function had been mentioned in passing by one or more of the health professionals they would see on a routine basis. The majority of people we talked to were aware that their kidney health was being monitored through regular blood tests, but several of them had not known that their kidney function was decreased before they had been invited to take part in this study.
 

Ken found out 6 months ago that his regular blood tests were part of being monitored for a mild kidney impairment. Ken was surprised but not concerned as the GP had just mentioned it in passing

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Age at interview: 72
Sex: Male
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I guess, as I say, it was really only about six months ago I learned that I had CKD and, you know, I've had one blood test since then, as part of research, yeah.

Do you think they were checking on it a while before that though?

I think they probably must have been, yeah. But I don’t know the actual point where they decided that I had a problem.

Yeah.

And I didn’t know because I had no symptoms.

When I saw the doctor about something else, and do you know, I can't remember why I went to see him. It was something fairly innocuous I think, you know.

Yeah.

And I saw the doctor and then in passing almost, he said, "Well of course with chronic kidney disease, you know…," and I didn’t really - I should have picked him up on it actually you know. But I thought, 'Oh, oh yeah,' [laughs] yeah.

So that was the first you'd heard of that term?

That was the first I'd heard of that term yeah, yeah. Whether he thought that I'd been told previously, I don’t know, because I'd seen another doctor previously, a different doctor previously. And he said, "Well of course you need to have blood tests, you know." And I thought it was because of some sort of medication I was on, you know, but didn’t really query why that was.

No.

So, it may well be that seeing different doctors played a part in me not being told that I had a kidney problem, I don’t know, speculation.

So when he said chronic kidney disease you were a bit surprised?

Yeah. I was surprised but I'm not surprised enough to say , you know, “I ought to know more about this” [laughs] to be honest. He may not have used the word chronic actually, he may have said just kidney disease or something, you know. But I can't really recall now, but he certainly mentioned kidney disease as a sort of side… in passing, if you like, you know. No, yeah OK [laughs] and that was it.
 
 

Joan only found out about her kidney impairment when the diabetes nurse invited her to take part in this study. Whenever she had asked the doctors about her kidneys before she had been told they were ‘fine’.

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Age at interview: 70
Sex: Female
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I went for my normal routine check up to have blood tests and blood pressure and water and that. And my diabetic nurse came in with the nurse that was doing the test to send away to have the results come back and she asked me if I’d like to join this programme that you’re running. And I asked her what it was about and she explained in my language that it was due to kidney problems. And I went into defensive mode. I said, “No, I’ve never had kidney problems. I haven’t got kidney problems with diabetes. It’s you know, I’ve been told everything was all right.” And then she told me that I had a kidney problem that was being monitored regularly and I asked her, “How long have I had it? Can you tell me when it was diagnosed?” And she said in nineteen ninety seven, which was an absolute shock. [laughs]

We had a short discussion because she had to go and see to other patients and she was under the impression I knew. But my daughter and I had been to the doctors when the results came through before, and I’d asked about kidneys and they’d always said, “No, they’re fine.” So this really was a bit of a…

A shock. I laughed about it at first. I thought that it was a bit of a mix up.

But now I understand there isn’t but yet I haven’t had it explained to me quite what it entails or what it’s about. It’s something I’ve got to go back and have a chat about.
 
Most people we talked to had been told about their kidney impairment during a face-to-face consultation with a doctor or nurse. However, a few people had found out that they had chronic kidney disease, or CKD, through receiving copies of letters between GPs and consultants or because they had asked to see a copy of their test results. For Lesley, reading a blunt diagnosis in a letter without immediate access to a health professional to explain its meaning was anxiety-provoking, and she immediately asked for a GP appointment.
 

Sarah was amazed to learn from a copy of her hospital report that blood tests had shown her to have CKD stage 3 several months earlier. Her GP had not informed her yet.

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Age at interview: 77
Sex: Female
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Well I have been looking after my husband for some years. He has been ill and so it’s been quite a stressful period. And I have managed to keep going quite well but now I have some back problems and some other problems and I had kidney infections in the summer and went to the GP who gave me an antibiotic. I thought it was very clever of her to sort out that I’d had a kidney infection, because I’ve had no symptoms other than a high temperature and being quite ill over the weekend. And then a month later I had another kidney infection and was given another antibiotic and improved and got much better, and then my back problems got worse, so I asked for a referral letter. When I went for the referral letter, a copy of it - because I like to get copies of referral letters and tests - I asked for copies of my last blood tests as well. So when I looked at the Path Lab report, the copy of my blood test, I was amazed to see a comment saying, ‘Please inform patient CKD Stage 3.’ So I thought chronic kidney disease Stage 3, that’s a bit extraordinary. So I thought I must see the GP straight away and see what is going on. And the blood tests were done in June and this was well into the autumn.
Health professionals may hold different views on when it becomes necessary to inform patients that they have developed a mild kidney impairment (see also ‘When should doctors inform people of a mild kidney impairment?’). Margaret, and Bernard’s wife Shelley, are examples of people we talked to who found out about their impairment ‘by accident’ when they happened to see a doctor or nurse different from their regular health professional, who mentioned kidney damage assuming that they knew about it.
 

Margaret didn’t know the medicine she had been prescribed had affected her kidneys until a nurse commented on her kidney impairment a couple of years ago.

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Age at interview: 72
Sex: Female
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So I’ve had high blood pressure problems for a long time and then, when… it was in about 2000, the doctor, the GP I was with then prescribed tablets, which is the ones that damaged the kidneys a bit, apparently, but I didn’t know at the time that it had damaged the kidneys until a couple of years ago one of the nurses at the practice said about the kidney damage and I said I didn’t realise. And she said, “that’s partly why you have the blood tests twice a year”.

Yeah, well, ever since I’ve been taking the blood pressure tablets, I go to the doctor, I go to the nurse twice a year for blood tests. And I didn’t actually know that there was anything wrong with my kidneys until a few years ago one of the nurses said, she said, “Oh, the kidney impairment is not bad at all.” And I said, ‘What do you mean?” And she said, “Oh well.” She said, “Haven’t you been told?” She said, “You’ve got a, you know, your kidneys aren’t functioning a hundred per cent.” But she said, “They’re quite good.” And I said, “No, I didn’t know” and I never thought I had any problems, so… So because I mean, up until then, I didn’t even know that they were impaired. I thought I was just having the blood tests because I was taking tablets. But, apparently, they can cause a bit of damage but- now I’m fine.

So when you, do you remember back to when she mentioned that and talked about “your kidney impairment isn’t that bad”…

Yeah.

… what went through your mind and what questions did you ask?

I thought, well, they give you tablets to cure one thing and it gives you something else. But then I’ve got friends that have had chemo for cancer and that causes even worse problems, so it’s just, you know, your kidneys don’t work a hundred per cent, fine. But they’re still working, so it doesn’t bother me.
 
 

When volunteering as a case study, Bernard’s wife Shelley was horrified to overhear a GP telling his students that her kidneys were damaged when she had never been told.

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Age at interview: 79
Sex: Male
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And for you [addressing Shelley], when you ask information from doctors at the hospital or at the GP’s surgery, do you actually tell them that you’ve got a nursing background?

Shelley: They know, actually, because I- I do I’ve got …., my diabetes, I’ve got certain, [pause 2 sec] I can’t think of the word now.

Bernard: Charcotic

Shelley: Yes, I’ve got trouble, I’ve got diabetic feet.

Yeah, yeah.

Shelley: And they use me, at the doctor’s surgery, for medical students.

Right.

Shelley: So I hear quite a lot of information there as well with the medical students asking the GP… about my particular condition with my feet.

Yes.

Shelley: And quite a bit of information comes out.

Right.

Shelley: And that’s when I first learnt I had kidney damage. Because the GP was talking to the medical students.

Oh right, so you kind of overheard him giving…

Shelley: I did, yes, and I was quite horrified. Because I didn’t realise that I did have kidney damage but I’m not so advanced as my husband.

And what was it like for you finding out in that way of the GP telling another student. Can you tell me a little bit more about how that interaction went?

Shelley: Well, I was a bit shocked to hear it. But then I know that it is a complication of diabetes. I mean the eyes and the feet and the kidneys.

And I’ve got the eye problems and the feet problems so invariably, I knew I would get kidney problems. So I was… a little bit shocked but not surprised.

And did you have any questions at the time?

Shelley: Well, I wasn’t in a position. I was [laughs] I was the model. I was the guinea pig so I overheard what was said, naturally, but I didn’t question it, which I suppose I should have done, at the end of the session.

Did you go back and ask questions at a later time?

Shelley: No, as I said, I asked my consultant at the next diabetic clinic, because I’m seeing I’m seen six monthly at the hospital. And six monthly at the doctor’s surgery. Because I’m on insulin I suppose.
 



Last reviewed August 2017.

 
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