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Kidney health

The words doctors used to explain kidney impairment

The language that doctors used to tell people about their kidney impairment varied widely. A few people we spoke to had been told that their condition was referred to by doctors as Chronic Kidney Disease (CKD). The term ‘chronic’ is often misinterpreted as meaning serious whereas it actually means long-term. Some doctors prefer to think of kidney impairment as a risk factor for other conditions and a ‘barometer ‘of general health rather than as a disease, and therefore avoid using this label when talking to their patients.
 

Having only recently learned of his kidney disease, Eric finds it hard to understand how it can be referred to as ‘chronic’. This term also makes it sound more serious than it is.

Having only recently learned of his kidney disease, Eric finds it hard to understand how it can be referred to as ‘chronic’. This term also makes it sound more serious than it is.

Age at interview: 79
Sex: Male
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So do you remember how you felt when you read that in the letter about having chronic kidney disease?

I couldn't understand how I could be described as having chronic kidney disease when it had only just been discovered. ‘Chronic’ to me means – well maybe mistakenly – that I've had it for a long, long time. But I've noticed that ‘chronic’ seems to be a word that a lot of medics use quite frequently and I'm not sure it actually applies in all circumstances, because other conditions I've had and got have been referred to as ‘chronic’ anaemia. I've never had any treatment for anaemia, like I've never had any treatment for kidneys, but they keep using this work ‘chronic’ and I think the word ‘chronic’ makes it sound worse that what it is, to me anyhow. My interpretation of ‘chronic’ is that it's bad and you've had it a long time, but I don't think that's the case.
 
A few people knew that their stage or level of CKD was 3 on a scale of 1 to 5, and some had been told a specific figure for their kidney performance, such as 53 or 40 (sometimes described as a percentage), although not everyone knew that this figure was called the estimated Glomerular Filtration Rate (eGFR) (see ‘How and why is kidney function monitored?’).
 

Gerald had been told his kidney function was at level 3 out of 5, and was quite acceptable for his age.

Gerald had been told his kidney function was at level 3 out of 5, and was quite acceptable for his age.

Age at interview: 79
Sex: Male
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They told me my right kidney is functioning at something like level three.

When there were five levels and there's one… one is obviously working at high efficiency; two just below and three is quite acceptable for someone of my age even though it has been damaged in the past. I mean in fact my GP said probably my kidneys are working as well as any other eighty year old so there was nothing to worry about. And apparently in the one, two, three, four, five system there are categories when you say well three is alright, then it doesn’t just go from three to four, there's a… it's three and I think, I can't remember the term he used, but there's three with another sort of possible effect, before I went into four and so he said three, for my age, was reasonably acceptable.
 
More commonly, people did not remember having their kidney condition discussed using these terms, but instead had it explained in euphemisms, such as their kidney performance was ‘borderline’, ‘a bit low’, ‘decreasing’, ‘satisfactory but not good’, or ‘not as good as it should be’. Some were told that their kidneys were performing as if there was only one of them, not two. Jim B’s kidney impairment had been diagnosed before the term CKD was introduced; he was told he had a ‘damaged kidney’.
 

Russell’s GP usually tells him that his kidney test results are ‘all clear’ and doesn’t discuss them in detail with him.

Russell’s GP usually tells him that his kidney test results are ‘all clear’ and doesn’t discuss them in detail with him.

Age at interview: 84
Sex: Male
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I'm particularly interested in what kind of information you got from your GP… about your kidneys. Can you remember when you have your check-ups how do you get told about your test results?

He just says that it's either… if it was anything wrong he would tell me but he normally he says it's all clear.

But apart from that we don’t really discuss it too much we just… because if there's anything wrong he just does a referral.

And has he explained to you how your kidney function compares to other people’s?

No never no. No we haven’t had that information at all.

Now you’ve explained to me very well that you really trust your doctor and you're very happy with the medical team.

Mm

What we'd like to understand is, at what point would you want to be told about say specifically your kidney function, because I think I explained to you, it goes down with age anyway. When would you want to, your GP to tell you in more detail what was going on?

I haven’t got any qualms about that because what I- what I do know is that if there was anything going wrong he would tell me immediately.

My doctor would tell me immediately, he wouldn’t pull any punches about it, he'd just tell me and I don’t think that he would hold back on it.
 
 

Jackie learned her eGFR when she saw a letter written by her kidney specialist; before then she had been told she had the function of one and a quarter kidneys. Recently her function has reduced from 49 to 40 ‘percent’.

Jackie learned her eGFR when she saw a letter written by her kidney specialist; before then she had been told she had the function of one and a quarter kidneys. Recently her function has reduced from 49 to 40 ‘percent’.

Age at interview: 59
Sex: Female
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So how did you know, in the past, if you weren’t given the numbers, you were just told everything was fine, how did you know what was happening to your kidney function, whether it was going up or down?

The only, it’s only been because of, in fact the first time I ever knew about the, it’s the G, is it the GNR?

GFR.

GFR. The first time I was really aware of that was when I moved house, not long after my husband and I got married, and that was to do with insurance, life insurance for the mortgage. And it was, for the first time it was weighted, they wanted to put this extra premium on, and that had never happened before. And I queried it, and that’s how I went back to the hospital. That was how I went back to the hospital, when I think about it. It was because, so I went to see my GP and said this this is what’s happening and the GP didn’t feel that he could respond to that and so wrote to the consultant I used to see prior to being transferred to primary care, and that’s when I went to see the consultant. And that’s when I was first prescribed the statin. And he sent a letter off to the insurance company and my GP, and I was copied into that letter. And that was the first time I was actually, aware, I had previously been told that I had about one and a quarter kidney function but that’s, I know that’s not a measurement, but that’s how it was described to me as someone who had one and a quarter kidney, although it’s both my kidneys that are damaged. That was the first time. And that’s how I know, how I knew it had gone down, and also I, well, yeah, how I knew it had gone down, when I moved more recently, from that that letter that actually stated what it was then.

So what was your latest reading? Do you remember?

I think it showed that I had about forty percent kidney function, which had gone down, I know when I’ve looked back, it had, it had gone down in recent years. It had been higher than that and it had been close, I think, to about forty nine percent.
 
People were often told that it is common for kidney function to decline as people age and that their level of kidney performance was typical for their age group and nothing to worry about. Martin’s kidney performance was lower than expected for his age of 70 and was told that his kidneys were ‘ten years older than him.’ Flo was told her kidneys were showing signs of ‘wear and tear’ and were leaking protein into her urine.
 

Eric accepts his GP’s explanation that kidney function may decrease as you get older, because he is aware that other aspects of bodily function also decline with age.

Eric accepts his GP’s explanation that kidney function may decrease as you get older, because he is aware that other aspects of bodily function also decline with age.

Age at interview: 79
Sex: Male
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When you first saw the GP about your chronic kidney disease do you remember the explanation that she gave you?

No I don't think I do.

Don't worry it's not a test [laughs].

No it's a… I think when I see my GP we've got a very good relationship and we tend to sit and discuss things rather than her telling me or me telling her what I want to do, although I'm quite forceful – if I think something should be done I will try and convince my GP to have it done for me, but we've got a very good relationship.

So how do you feel…sorry, carry on.

But as far as an explanation of why the kidneys aren't working perfectly, she did, most recently, tell me that kidney function decreases as you get older, and I accept that as being the case like everything else. You get older you lose your memory and things, but no, as far as someone saying it is because you have done something wrong in your past or something else is going wrong at the same time which is affecting your kidneys, I don't know, I don't know. But as I said before, if somebody hadn't told me I wouldn't know. I don't think I would know now.
 
Increasing age was the most common explanation for their kidney impairment offered to people we spoke to. A few were told it might have been caused by certain prescription medicines they had taken for a long time or by having high blood pressure (see ‘Awareness of kidney disease and beliefs about possible causes’).

Being told not to worry about slightly impaired kidney performance is clearly intended by health professionals to be reassuring. It was common for people to say that they had felt reassured that their kidney impairment was not something they should worry about at the present time. Reassurance came from knowing that their kidneys were still functioning sufficiently to not cause them any problems, that they were being regularly monitored and that their test results were satisfactory or stable, and by trusting their doctors when they told them they were not concerned.
 

Royston Y was reassured by a nurse that just because he was taking part in research about kidney health didn’t mean there was anything ‘wrong’ with his kidneys. He suggests that other people should not worry about kidney monitoring either unless there was

Royston Y was reassured by a nurse that just because he was taking part in research about kidney health didn’t mean there was anything ‘wrong’ with his kidneys. He suggests that other people should not worry about kidney monitoring either unless there was

Age at interview: 82
Sex: Male
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But I was rather assured when I went for the renal one that it, it didn’t follow that there was a kidney problem. It was the, it was more the age and whether the kidneys were still functioning reasonably well.

[mhm]

Yes.

[mhm]

Because I did raise that point with the nurse at the, at, when I had that session.

And what was her response? Can you remember?

Well her response was, “It d-, it doesn’t imply that there is anything wrong with your kidneys. It was the question of because of your age it was useful to get some information about your general well-being”, and that sort of thing. And presumably from that they can come to some conclusions.

Okay, fine.

Do you have any message to other people who are having their kidney function monitored?

I would have said that it’s something that I don’t think anybody should really worry about too much because I think it’s to a person’s interest to know what the situation is and to find out if there might be a problem. And if there, is it treatable, can it be dealt with? But I don’t think people should be unduly worried. I was slightly concerned but I was reassured when I went and said that it, it doesn’t necessarily follow that because you’re being [clears throat] looked at or asked for an opinion that there is necessarily anything wrong.
 
 

Kath was told that as long as she kept off the drug that had caused her kidney impairment she should be able to live with it. She felt reassured that she could put this to one side and concentrate on other health problems.

Kath was told that as long as she kept off the drug that had caused her kidney impairment she should be able to live with it. She felt reassured that she could put this to one side and concentrate on other health problems.

Age at interview: 72
Sex: Female
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Did you ask any questions about the kidney damage?

I asked about my GP about it and he said that I wasn’t to worry. It wasn’t very bad yet and as long as I kept off the medication, they didn’t see why I shouldn’t be able to just live with it.

When I moved down here I did sort of go into it a bit more and I was told that I’d got third stage kidney disease. And they gave me some figures, which I’ve since forgotten. I think it was something like sixty was normal and mine was forty something and if it got to thirty then they would do regular blood tests every month but it would it would have to get down to about ten before I needed kidney dialysis. So basically, it was not- not a lot to worry about.

And what did you make of that information? Did you find that reassuring?

Yes, I did. Yes as I think, well, that’s okay. I can put kidneys to one side for the time being and just concentrate on the arthritis, which is the main, my main concern health wise.
 
Unfortunately in Jim B’s case it was false reassurance because after being told his kidney performance had stabilised he had not realised that it was still being monitored or had become a cause for concern until he was told it had reached dangerous levels. A GP in the practice claimed he had told Jim B about his CKD earlier but Jim B has no recollection of it.

However, the explanation given, and being told not to worry, was not always enough to reassure people. This was more likely to be the case among people who felt a need for more information about the condition than they had been given or those who had had a family member with kidney failure. Xanthe and Anne said they had been told that they might need dialysis at some point in the future, and this may also have been intended to reassure them that treatment would be available if their kidney performance were to decrease to a dangerous level. However, they were shocked to hear the word ‘dialysis’ when they were first told of a decline in their kidney function.

For more about people’s reactions to the diagnosis see ‘Thoughts and feelings at diagnosis’.
 

Elizabeth didn’t find it reassuring to be told that plenty of people can live with one kidney, because she wanted an explanation of why her kidneys were not working as well as they should.

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Elizabeth didn’t find it reassuring to be told that plenty of people can live with one kidney, because she wanted an explanation of why her kidneys were not working as well as they should.

Age at interview: 74
Sex: Female
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So before this happened to you did you know that people could have these kinds of problems with their kidneys?

Well I've heard of it, yeah. Cos the lady round the corner, she had kidney failure, she was about my age and she used to have to go up the hospital three days a week, yeah. Because if my kidneys go that’s it, isn’t it, I mean…it's the end of you really, isn’t it, if your kidneys fail.

Did the doctor have any reassuring words for you?

No. Well she just said to me what I said to you. She said, "Hundreds of people live on one kidney, you can live your life on one kidney and it shouldn’t affect you", so that’s all she's told me.

Mm is that not reassuring?

Not really. Not really. I want to know why they're failing, that’s what I want to know. I mean I'm not a drinker, I don’t drink, so whether it is the medication or whether old age.

Well she hasn’t explained, she just, as I say, she has just said that my kidneys aren’t working as they should and I'm almost living on one kidney, but I wasn’t to worry because hundreds of people live on one kidney. But then it starts alarm bells ringing doesn’t it? Why are your kidneys failing; what have I done to make them fail? Is it my lifestyle, is it tablets? I mean it can't be drink because I don’t drink; is it coffee? You don’t know, do you?

But you do all that worrying despite the fact that she said not to worry?

Mm, you still worry of course you do, course you do.
 

Flo had been told that her kidneys were showing signs of wear and tear but not to worry. But she said that being told, ‘Don’t worry’, actually caused her to worry.

Flo had been told that her kidneys were showing signs of wear and tear but not to worry. But she said that being told, ‘Don’t worry’, actually caused her to worry.

Age at interview: 70
Sex: Female
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What was going through your head?

[Laughs] everything you could think of. You're wondering if it… previous to that they… I was called back a few years ago for a water sample again and I said, "What's wrong?" And the nurse said, "It could just be just one of those things, don’t worry about it, but we're just going to check and make sure." One of the results came through - because you wait a week and then you have to ring in for them - and she said, "You're back in range you're alright, don’t worry, we'll see you again in six months as usual." Oh that’s fine. But [sighs] …But when I queried it with the doctor he said, "It's alright don’t worry, you're getting older. …And your kidneys are the same age as you [laughs]; and they're working every day. And they're showing signs of a little bit of wear and tear – it's normal, don’t worry." Which means worry.

So you were- that worried you.

Yes it does because when somebody tells you, "Don’t worry it's alright, don’t worry," you think, 'Why is he telling me not to worry. And I am worried now,' because it's nothing, that you're not expecting it and it isn’t normal.

So what kinds of concerns and questions did you have at the time? So this is four years ago now, or three years ago right?

Three years ago. Well I just said, "Well what's going on, what's happening?" and he just said, "You're leaking, you're leaking some protein; don’t worry about it. You'll see a consultant and we'll take it on from there."
 
 

Xanthe only has one kidney so felt scared when told it was not functioning properly but if it failed she could be given dialysis. Knowing dialysis was available was only slightly reassuring.

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Xanthe only has one kidney so felt scared when told it was not functioning properly but if it failed she could be given dialysis. Knowing dialysis was available was only slightly reassuring.

Age at interview: 72
Sex: Female
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Yes. I went, I think I went to a Well Woman Clinic which lots of us do. That’s, that’s quite normal isn’t it?

I think that’s, that’s how it happened. And then there was a phone call from the surgery, and a request for me to go back because something had been spotted.

So when you went back what did they say to you?

[Ah well] ‘We’re looking at kidney function. But don’t worry; you can always be supported on dialysis.’ That was, that was quite scary.

From thinking I was fit, and suddenly the ‘D’ word is mentioned.

So have you discussed your worries about them possibly failing with your GP? ‘It’ failing, sorry.

Well, [sigh] other than to be told that there was dialysis. It sounds as though I wouldn’t be sent to a renal specialist until I was way, way down the line. Now I do wonder about that. Should we really get quite ill before we are sent to a renal specialist. I do feel - perhaps not.

Especially when you’ve only got one kidney to play with.

Yes, yeah.

Your GP does realise that presumably?

Yes, yeah.

So your GP hasn’t done a great deal to sort of allay any fears you might have?

It’s not like wrapping you in cotton wool. I think he expects you to, to be brave to a certain extent, perhaps. But there is that fear there.

And…

But all illness is scary isn’t it?

It can be, yes. So do you find it reassuring being told that, ‘there is always dialysis’?

[Sigh] I’d feel [sigh] less reassured if there wasn’t dialysis. Let’s put it like that.

True, yeah.

If it was the only option I’d certainly go for it.
 
Many said they would like more information from their doctors about the condition and what they can do to help themselves; some said they expected their doctors to be honest and open with them. Flo and her husband Fred suggested that doctors need to always remember that it can be frightening for a patient to be diagnosed with a medical condition. It was suggested that doctors should listen to patients more when talking to them so as to be aware of what things concerned or frightened them, and to take care to put them at ease and not panic them. Others said that being able to see the same GP repeatedly would build stronger doctor-patient relationships; this could help GPs to know their patients better, enabling them to better judge their information needs and preferences, and give patients more confidence to ask questions. (See also ‘When should doctors inform people of a mild kidney impairment?’).
 

Ken thinks that after being told they have a chronic condition people should be told about it in more detail by their doctor, but realises that the patient could also go back to ask questions later.

Ken thinks that after being told they have a chronic condition people should be told about it in more detail by their doctor, but realises that the patient could also go back to ask questions later.

Age at interview: 72
Sex: Male
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And do you have any messages for health professionals who are looking after people like you?

Yeah, make sure, you know, they communicate what they can, you know - about the disease. It may well be that my condition is not that serious yet, you know, but then it's nice to know if, once they tell you you’ve got a chronic kidney disease, it's nice to know a little bit more about it I think, that’s the only message. And I know it's a two way process that - I could find out myself.

Find out for yourself not by talking to the GP, you mean by other things?

Yeah I could. No I could also go back and see my GP and say, "Look you’ve told me I've got this, you know, can you explain a little bit more about it?"

At the moment you're in a state where you're not worried because they’ve told you so little?...

That’s right
 
 

Tina suggests that doctors should listen to their patients more and ask them how they are feeling about their health problems or what they’ve been told.

Tina suggests that doctors should listen to their patients more and ask them how they are feeling about their health problems or what they’ve been told.

Age at interview: 54
Sex: Female
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And what messages would you give to the health professionals involved in looking after people who has a declining kidney function?

Listen to your patients. You know, they’re quick, they’re trained to be medical people and tell us the facts, but also have an ear for how your patients are, and listen, really listen to them because it makes a difference, you know, if you go into a consultant’s room and they’re just going to say, “You’ve dropped from this to that and we’re going to put you on this.” But not, “How are you?”

To deal with any condition, with a mental awareness issue, put it that way… is good. If it, if they cannot just look at what you’re experiencing but, “How’re you feeling about that?” It makes a big difference.
 
It was widely acknowledged that GPs are very busy and have limited time in each consultation to explain things to patients. Some people we spoke to offered suggestions for how doctors could provide further information about kidney impairment and the need for regular monitoring but without causing anxiety. Ken and Sarah thought follow up consultations to learn more about their kidney impairment would be helpful. Harry and Nell would value more feedback about test results in simple language. Jackie Z suggested that she wouldn’t be frightened by receiving a standard letter explaining that over a particular age certain tests would be done regularly to try to prevent ill health.
 

Sarah learned about her CKD in a casual GP appointment where time was limited and she did not feel reassured. She would have liked the GP to suggest a follow-up consultation to discuss it in more detail.

Sarah learned about her CKD in a casual GP appointment where time was limited and she did not feel reassured. She would have liked the GP to suggest a follow-up consultation to discuss it in more detail.

Age at interview: 77
Sex: Female
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How do you think doctors can reassure people, because it seems to me that anytime they say, ‘Don’t worry’, the first thing you do is worry?

That’s right. So I think the response perhaps should be, ‘Yes I can understand that you are worried but we will keep an eye on you and there are certain things that we can do. So I haven’t got much time now, so how about making a proper appointment and we’ll talk it through and then we will see perhaps about getting you some regular blood checks or something like that. And then I wouldn’t have gone home thinking, ‘No I am not reassured. I would have thought, right well let’s think of the next appointment. I must find out about this and then I can ask some questions and see what the plan is for the future.

But it is very difficult for GPs if they have got short appointments, which most of them have, particularly if it’s a casual surgery. They’ve got, there were hundreds of people pouring in for casual surgery, a few doctors to see all these patients within an hour, so it is very hard for them. But I think that’s, maybe if I had been a GP, or maybe you can’t do that with all the patients, otherwise you’d be working day and night, but I think I would have suggested another appointment a few days later or when convenient and then talk it over.
 


Last reviewed August 2017.
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