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Kidney health

Thoughts and feelings at diagnosis

We asked the people we spoke to about their thoughts and feelings when they had first found out that they had a mild kidney impairment. For some, diagnosis had happened quite recently and they had clear recollections of what went through their minds. Others had lived with the knowledge of their kidney function being slightly impaired for many years, and some of them struggled to remember how they had felt about it at first. People’s initial reactions varied greatly; some felt little concern, relief or indifference and others said they were shocked, worried or fearful. Other health concerns, outlook on life and people’s age, personal and family circumstances influenced how they responded to the diagnosis. How much, and the type of information and explanation people were given at diagnosis also influenced some people’s reactions (see also ‘The words doctors used to explain kidney impairment’).
 

Bill feels worried about his diagnosis. His older brother had to have a kidney transplant and he worries because their health histories are very similar.

Bill feels worried about his diagnosis. His older brother had to have a kidney transplant and he worries because their health histories are very similar.

Age at interview: 71
Sex: Male
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Well - it worries me a bit [smiles] a bit about it you know because same as I said, my family has got a history of diabetes. My brother, he was older- one of my older brothers – he had kidney problems when he was quite young. And then he had kidney failure completely and he had a transplant done and that worries me a little bit… with me; we're both exactly the same build and everything. He had bowel cancer and it seems to me everything he got, I get.

So… but I, you know… as long as I keep having… my blood test done and it comes back that everything is OK, I'm relying on the doctor to tell me if I need… to change a lifestyle or what I can do about it.
 
 

John thinks of his kidney impairment as a normal part of getting older. His GP assured him it was unlikely to become a problem for 30 years.

John thinks of his kidney impairment as a normal part of getting older. His GP assured him it was unlikely to become a problem for 30 years.

Age at interview: 75
Sex: Male
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Now, coming back to when the GP told you you’ve got chronic kidney disease, what kind of things were going through your mind?

I wasn’t worried. …I wasn’t worried. As I say, I was seventy four and he told me, you know, it won’t be a problem for thirty years. And I probably could have… ah, you know, there was there going to be a cure, you know, dialysis or something, wasn’t there, you know? so I wasn’t really worried about it. …It’s the sign of ageing really, you know, I’ve lost my hair, lost my teeth, lost my waistline …so it was just …part of getting old you know, and that’s what, what I expected.
 
 

Jill, who also has atrial fibrillation, is not overly concerned about her kidney impairment. If she were younger she might feel different.

Jill, who also has atrial fibrillation, is not overly concerned about her kidney impairment. If she were younger she might feel different.

Age at interview: 77
Sex: Female
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So you had the cholesterol test and the liver function and your kidneys were also checked at the suggestion of the GP.

Yes.

What happened next?

Yes, well, the result was that I’m now thirty percent, whatever that means, it doesn’t- I don’t understand how- he said to me that really, if you, you know, “when you’re young your, and your kidneys are fine, you’re about sixty per cent.” I’m down to thirty per cent and he said if it got down to fifteen per cent, that’s when he would involve the kidney team but hopefully, this was fairly recent, so hopefully that…I won’t need to see anybody.

And how were you told the result of this test and that you were thirty per cent?

Because I went back to see him. No, well, let me just think… I- if you - …at the clinic, you can ring up after three in the afternoon and they’ll give you the results. But I think I must have gone to see this GP about something else. I can’t think what it would have been? …And he gave the results himself and that’s when we could discuss it.

I honestly can’t remember why I went back to see him.

And so that was just a few months ago was it? Or-

Yes, that was fairly recently. Yeah, I would say probably around Christmas time. That sort of time.

And can your remember that consultation when you were told that your kidney function had decreased? What were your feelings and thoughts at the time?

Well, uuuuhhh (frightened sound) I wasn’t very happy about it but he, the fact that he explained it all to me and, you know, reassured me that I needn’t worry at this stage, but he would keep an eye… on me, and do… kidney tests.

And I think… you know, if I was fifty eight or fifty whatever and these problems were all coming up, I would be much more worried. But I sort of feel, well, I’ve got to seventy eight, that’s not bad. And my children will inherit my money [laughs] so that won’t be bad. I’m sort of very you know, I have a strong religious belief, too, and that is an enormous comfort with the idea that you’re going to die soon. It doesn’t frighten me that I’m going to die soon. I don’t want to die soon [laughs] but it I’m not frightened by it.
 
Some people we talked to had hardly thought about their kidney impairment in terms of a diagnosis before we interviewed them. Jill said she wasn’t “very inquisitive” when told about her kidney impairment. Knowing that she would be monitored on a regular basis and that there was no immediate need to be referred to hospital was sufficiently reassuring to her. Margaret also said she “wasn’t fussed about it”. Eric accepted that it was just part of the ageing process and he trusted his GP to monitor his kidney function and tell him if treatment was required.

Even though a mild kidney impairment is not usually associated with symptoms, receiving a diagnosis could make some people wonder whether symptoms of ill health that they had experienced in the run up to diagnosis might be caused by their kidney function.
 

Lesley had seen a GP about her swollen legs. She received a letter 2-3 weeks later telling her she had CKD3 and not to worry. She did feel worried and immediately made an appointment to find out more.

Lesley had seen a GP about her swollen legs. She received a letter 2-3 weeks later telling her she had CKD3 and not to worry. She did feel worried and immediately made an appointment to find out more.

Age at interview: 58
Sex: Female
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When I went to the walk-in-centre with my legs, because they were really swollen badly and I couldn't touch them, I saw a random doctor there and he said, "Your legs look really bad", put me on two or three furosemide tablets a day and …

No OK.

What's it called the tablet I had? Keep forgetting. Steroids.

Yep.

Oh he put me on three, two or three furosemide tablets a day and steroids, which I took for a week and then gradually reduced them, then the swelling started to go down. I just thought it was like a fluid retention thing, and then about, I don't know, two or three weeks later I came home and found a letter on my doormat from my GP to say that you have a CKD3. I thought, 'What's that? Chronic kidney disease, my goodness.' I read through this leaflet, which kind of said it's nothing really that much to worry about. I thought, 'Well I'm worried about it, I'll make an appointment and go and see this doctor'.
 
However, the absence of symptoms may make it hard to view kidney impairment as a health concern. Jim, who also has Type 2 diabetes, said he found it difficult to understand that he had been diagnosed with a kidney impairment when he did not feel any different in himself. He reasoned that since there had been no need to provide treatment, the condition could not be too serious. He’d rather not think about it and concentrate on his diabetes.
 

Barbara had never thought about her kidney health before being invited to take part in this study. She would only get worried if she started to experience symptoms.

Barbara had never thought about her kidney health before being invited to take part in this study. She would only get worried if she started to experience symptoms.

Age at interview: 69
Sex: Female
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So before you were invited to take part in this interview you hadn't really thought about your kidneys?

No, no. No because I'm fine. I mean if I wasn't… what can I say… if I wasn't passing urine or anything like that then I would have been worried and obviously I would have went to the doctors and said, "Well look I'm not passing urine like I should be," but I'm fine [laughs]. I'm fine on that one.
 
 

Jim found it difficult to understand how he could be diagnosed with a kidney impairment when he did not feel any different. He’d rather not think about it and concentrate on his diabetes.

Jim found it difficult to understand how he could be diagnosed with a kidney impairment when he did not feel any different. He’d rather not think about it and concentrate on his diabetes.

Age at interview: 75
Sex: Male
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So how did you feel when they told you there was something going on with your kidneys?

Well, I couldn’t really understand it because I didn’t feel any different. Obviously, you, as you’re getting older, you get slower and things like that. But I didn’t think it was anything to do with kidneys or anything like that. I don’t feel any different.

I haven’t really put much thought into it. I try not to think about things that are wrong with me otherwise I start worrying about them. I know I’ve got the diabetes and I know how to handle that, but anything else, you know, I don’t know.
 
Some people had experienced strong and sometimes quite mixed emotions during the diagnostic process.
 

Laura was devastated to be diagnosed when she was only in her forties and learned that she would need to take blood pressure medication. She became depressed and had to seek private therapy.

Laura was devastated to be diagnosed when she was only in her forties and learned that she would need to take blood pressure medication. She became depressed and had to seek private therapy.

Age at interview: 60
Sex: Female
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Do you remember how you felt when you first heard about it?

Oh probably devastated, I think absolutely devastated, yes. I think I was just about to go on holiday, and they, I was told that I needed to take blood pressure tablets and I needed to start them immediately. I think if I hadn’t been just about to go on holiday I might have tried doing something else rather than the blood pressure tablets, like lowering my blood pressure in some other way, but I didn’t have the chance because I was going on holiday, they told me it had got to be immediately, so I did it, and I’ve been taking blood pressure tablets ever since. Yes I think I was, I was shocked, devastated, probably felt very alone with it because I was sort of in my forties, so I was young. I think I was - I don’t know if it was the consultant, was it the consultant or my GP who told me? - whoever, they mentioned that I was young to have it, because I think it’s, kidney disease is mostly an older person’s illness, but you do have younger people of course, in fact my, my relative was, must have been quite a little boy when they discovered he’d got kidney disease, yes.

Yes anyway I was very, very scared and I got depressed, which was another reason for having the therapy actually, because I got very depressed. I think I got, there were things in my past as well that could have been connected with depression but this was the first time that I really, I really got depression. And my therapy eventually helped me to, to see it coming and not to go there really, so I’ve never been depressed like that again. But I was awful, probably for at least a year I would think, I was awful. And that was very difficult for my partner - who’s the same person I’m with now - because it was a young relationship and he had to deal with me being really awful actually and very, very despairing about it all. And I don’t think, I didn’t, I don’t think that the medical profession helped me with that actually at all. Yes I was very disappointed because they, again because I was trying to get therapy from the NHS and they weren’t willing to do that, and they didn't help me through this very depressing period. Yes so , but I’m much better now.
 
 

Xanthe had one kidney removed many years ago, so was shocked and cross when she learned recently that her other kidney was not working as well as it used to.

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Xanthe had one kidney removed many years ago, so was shocked and cross when she learned recently that her other kidney was not working as well as it used to.

Age at interview: 72
Sex: Female
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I suppose my kidney problems started a lot of years ago, in middle age. I’d been to the hospital with what I thought was some minor female ailment and I ended up having a nephrectomy four days later, which I don’t know whether it was a shock, or whether I didn’t take it in at the time. I probably took it in much, much later.

And then there was a long period of recovery and then a lot of healthy years I think… until, until I was hauled into my surgery for a surprise blood test. Or, as a result of a blood test for something unrelated - where they had spotted there was a kidney problem, which was a shock again.

Well [sigh] try, I try to get on but you do think about it and you worry. I don’t know which is uppermost now, the worry of cancer coming back or kidney failure. You’re thinking is the big hand of fate going to come down on me again [pause] but that’s, that’s negative isn’t it. I shouldn’t think that.

Have you talked about those kind of fears with your GP?

Yes, yes I have.

And what is their response?

I could remember one occasion where I was told, ‘Well we’d better look at such and such. If it was the cancer was going to come back it might be around about this time, this span of years where it did come back’. I thought, ‘Well that really, that really comforts me’. But we’re better to look anyway. Don’t be, don’t be a coward.

What does it mean to you to have impaired kidney function?

It makes me cross.

Does it? Why?

Vanity, I want to live forever [chuckle]. No, that’s a very flippant answer. No I like being fit.

Well, I just told you I didn’t smoke and I didn’t take paracetamol so I don’t know what I personally have done to land myself in this position. I suppose there is always a small element of guilt but if you said, ‘Why are you feeling guilty?’ The answer would be, ‘I don’t know.’
 
Knowledge of others who had been treated for more advanced kidney disease (that is, stages 4 and 5) influenced how people reacted to being told about their own mild kidney impairment, but in different ways. Some were terrified of the prospect of their own kidneys declining to a stage where they might need dialysis or transplant in future. Elizabeth said she “could just see dialysis on the way” when her GP told her that her kidneys weren’t working as well as they should, although she admits jumping to conclusions. However, others felt reassured that there would be treatment available and a good quality of life was possible. For example, John’s mother had died of kidney failure, but he feels reassured that in the forty years since her death, medicine and technology has made significant progress.
 

The thought of his kidneys failing scares Ian because his first wife had 19 years of home dialysis before she died.

The thought of his kidneys failing scares Ian because his first wife had 19 years of home dialysis before she died.

Age at interview: 82
Sex: Male
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Well, it’s, my thinking about them, I guess… if I’m absolutely honest, I’d be scared stiff if I have complete kidney failure and had to go on something like diabetes because…

Dialysis, you mean.

Dialysis, yeah. Because, having spent many hours in [hospital] Kidney Unit… connecting and disconnecting people up to dialysis machines and seeing all the various conditions and things over a period- period of a number of years… I’m not sure I could face it.

You mentioned your wife had home dialysis as well…

Yeah.

So you were quite involved in it.

Yeah, I mean I put her on and off three times a week.

Well, I’ve still got the electrical equipment, well, the… meter actually. I looked at it the other day. We had a special meter for the kidney machine so reading could be taken and… [sighs] I think it’s probably very hard for anyone who first goes on dialysis. I know my wife’s… her, found it very hard, the support you got from, in those days, from [hospital] was terrific. We had a direct line for, a direct telephone line. And… you could pick it up any time and within twenty minutes, twenty-five minutes, they’d be here, if you were really stuck. But… if you see in cold daylight, if you think about the situation whereby you’re taking a person’s blood out of their body and purifying it and sticking it back and you’re on your own doing this, without really any medical treatment, it’s a pretty hairy situation. And I think, oh I don’t know, from my point of view anyhow, I was very lucky and I guess…. someone once said to me… is that… god only asks you to do these things when he’s convinced that you’re capable of doing them. And I think, in this context, it’s absolutely right… that we all have to face these problems and one of mine was to run a kidney machine for nineteen years and look after my wife. …I’ve no regrets at all. I’d do it again… but if I’d known, in the beginning, what it really involved, I’d have been scared to death.
 
 

Flo regularly attends a hospital renal unit for her kidney checks. She has found it reassuring meeting people who have come out the other side of a kidney transplant.

Flo regularly attends a hospital renal unit for her kidney checks. She has found it reassuring meeting people who have come out the other side of a kidney transplant.

Age at interview: 70
Sex: Female
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Well people that… when you go to these places and you sit in the waiting rooms and you're all in there for kidneys. And you’ve got people that are going back in there because they’ve had a transplant and they're going for a check-up.

And they are very, very anxious to tell you that it's alright, you know, there's a bit of pain but don’t fret, you'll be alright [laughs], and I'm going back to work in a month, you know that’s…for them. To be truthful with you that’s the best tonic you can have because you see different - and they say to you, "I had that love, don’t worry about it."
 
 

Anne was encouraged by information from the Kidney Federation and from a TV program thinking that even if she had to have dialysis at some point it would still be possible to lead an active life.

Anne was encouraged by information from the Kidney Federation and from a TV program thinking that even if she had to have dialysis at some point it would still be possible to lead an active life.

Age at interview: 71
Sex: Female
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To me, the word dialysis meant something, you know, serious, something major was not right and that it would. I pictured somebody taking a long time to do dialysis and restricting anything; salty foods. I don’t know whether it’s still the case now but a long time ago, I read something about a young man who was having dialysis, and that’s when he used to eat things like salted peanuts and crisps. I don’t know whether that’s true but I picture that this is something major. And I was surprised that, when I looked at the magazine that’s produced by the Kidney Federation people, to see that there are holidays in Greece, for example, where people can go on holiday and have their dialysis.

And I thought, ‘oh that sounds more encouraging, you know, people must be able to do normal things alongside dialysis.’ And then there was an incident, something on the television, I forget what it was. And there was a young woman who - ah, that was it. She had a job in the city, in the financial sector, and she had her dialysis at home over night and then during the day, held this high pressured job and led a very normal, and active life.

So I thought, this is good to hear positive things about people who are having dialysis.
 
When receiving a diagnosis, it can be very important for people to understand the reasons why they have been affected by a condition and whether their lifestyle or genetic heritage has put them at a greater risk of poor kidney health. A willingness by health professionals to discuss these issues can help people in making sense of their diagnosis. However, it can be difficult sometimes to find the courage to ask further questions if appointment times are short or people don’t feel confident enough. Some people who had felt very worried when they were first told about their kidney impairment had tried to find out more information online, but that could sometimes raise further anxieties rather than put worries to rest (see also ‘Sources of information’). Others had told a sympathetic GP or nurse about their concerns, but not everyone felt able to do so.
 

Roy was quite worried despite his GP’s reassurances, because his brother had died of kidney disease. He felt embarrassed to ask questions in the consultation.

Roy was quite worried despite his GP’s reassurances, because his brother had died of kidney disease. He felt embarrassed to ask questions in the consultation.

Age at interview: 57
Sex: Male
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Roy: It was really yes because me brother, as I said, died of it in that late sixties, he had kidney problems, unfortunately he died. And so obviously it's probably genetic somewhere in the family, isn’t it?

Is that what you think that?

Roy: I think probably, maybe… I don’t know because a lot of people have got… all my family seems to get a problem with high blood pressure, cholesterol and my oldest brother's had heart surgery of the valves three times, replacements… and me as well and probably with my kidneys are slightly a bit low but nothing to worry about so I feel it- well could it be genetic.

So when you got a letter to invite you on a study on kidneys that kind of alarmed you a bit because you were worried that your brother’s…

Roy: That’s right yeah.

And but you did go and see your GP afterwards?

Roy: I did see my GP and I did spoke to him about you and… I did ask for another blood test but he said it's up to me if I want to but he said, "Really," he said, "you’ve only just had a blood test in the summer," he said , "your cholesterol was low… sugars not too bad, but if he was…slightly a bit worried, he said “your kidneys are slightly a bit lower," he said.

Yeh but you didn’t ask more about the “low”… what does it mean “low”?

Janet: No because I think Roy felt a bit embarrassed because there was a student there.

Oh, OK.

Janet: And I was the one what was asking questions, Roy was just sit back and… but he was… he is worried about that and he is. I'm not like that; because I love him… he is worried about it. Like I’ve known him or a long time and he does worry very quickly.

Yeh

Janet: And he does, and he did ask, “how low was it”. He said, "Just it's OK and if it gets worse, but you will be coming down again to have some more tests and it means that". So I just left it at that because I thought, 'Well it's not my… keep on- my place, keep on butting in,' is it?
 
 

John X was concerned when he got the diagnosis because his father had died of kidney failure at a young age. He also worried about whether his drinking had contributed to his decrease in kidney function.

John X was concerned when he got the diagnosis because his father had died of kidney failure at a young age. He also worried about whether his drinking had contributed to his decrease in kidney function.

Age at interview: 66
Sex: Male
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So I was quite surprised and I said, "What - kidney damage?" you know. The reason I asked, you know and I obviously… I was quite surprised. But my father died at thirty two of kidney failure. You know so – very young age – so, you know it does make you think, you know.

Can you remember your father being ill?

No I was- I was a baby when he died yeah. So I didn’t know my father but…

Had you always known that that’s what he died of?

Yes, yes, yeah because my mother had told me.

So there was an awareness of possibly kidney problems in the family?

Well… I didn’t know if it was going to be, what's the word congenital, I didn’t know if it was going to be… or something like that.

Mm hereditary?

Hereditary you know, I didn’t know. …And I hadn’t had any problems at a young age and, you know, nothing was detected then and I've… you know they’ve done tests before, I don’t know.

I'm sure at the time I asked, "Is this to do with drink as well?" you know because… obviously, you know, I'd been cutting that down anyway.

And the GP said “no it's not to do with drink”. So it’s… I think it was just… and said it's just hard luck you know, it's really one of those things. I suppose some people get things and there's no rhyme or reason for it but… that’s the only awareness I had of it, you know, at the time and…I knew before that, that it was a problem. I just thought it was to do with the function, the same as the liver you know, but I didn’t put it down as something different. So I thought, 'Well you know I've got to cut my drink down obviously,' which I was going to do anyway… and not so [laughs].

And did the GP tell you how badly affected your kidneys actually were?

There was a suggestion they’re about probably ten years older than what I am. Which is why I've said about, couldn’t remember them being born before me. I mean things I'd like to know – can I go on to that?

Things I would like to know is “will I ever have to go on to dialysis?” Will they actually fail me? Is there a chance of that? You know, are my kidneys going to… am I going to get kidney failure or something like that?

You know those sorts of questions I'd like to know. You know, I'd like to know the answers to those, mm...

But you didn’t ask at the time?

I did ask- I did ask them back, you know, “will there be… am I looking at dialysis or anything?“ And the doctor said, “no, no, no… not at the moment”, no, so…. So I thought, 'Well hopefully it stays like that then,' you know, let's hope they don’t get any worse you know and cause any more problems.

So did you feel reassured?

A little …[smiles] but you know, and I suppose I'm more sceptical because, you know, my father who certainly was thirty two years old and was very young.
 
People who believed that there had been avoidable delays in informing them about their decline in kidney health could feel quite angry about this.
 

Liban has regular blood tests and felt angry that he wasn’t told about the damaging effect of his diabetes medication on his kidneys for several months.

Liban has regular blood tests and felt angry that he wasn’t told about the damaging effect of his diabetes medication on his kidneys for several months.

Age at interview: 73
Sex: Male
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I was talking about it with the nurse for the diabetes. Because… when there was one nurse with the diabetes, there were two, one man one woman.

one man one woman looking after you for your diabetes?

For the diabetes checking, always. And…the diabetes checking…he know it. Because when they take the blood, every time they take the blood, they have it in the computer, every- everywhere.

Yeah

So they can see where I am. Where everything else is. You see? But they don’t tell me before… Why didn’t you do something? Yeah bla bla blab la bal.

What reasons did they give you?

Bla bla bla bla bla. There’s nothing, nothing.

No good reason?

No, just bla bla bla bla bla. Nothing. You can see, can see?

So how do you feel about that now? Has that affected your trust in these health professionals?

No, something is gone, it’s gone. You can’t - yesterday is gone. They look after yesterday - yesterday is going right?

Mm. okay so…

Yesterday is left. Can you run after yesterday and get it back? No!

But you would have liked to know earlier.

Yes, that I would, yeah that.
 
 

Sarah said she was ‘cross’ to find out her diagnosis of CKD from a copy of her test results that had been sent to her GP six months previously with a request to ‘inform the patient’.

Sarah said she was ‘cross’ to find out her diagnosis of CKD from a copy of her test results that had been sent to her GP six months previously with a request to ‘inform the patient’.

Age at interview: 77
Sex: Female
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You said when you first saw on that Pathology Report, ‘CKD’, is that what it said, ‘CKD’ rather than ‘chronic kidney disease’.

It said CKD, yes.

So how did you know what that meant?

From my medical background.

You already knew what ‘CKD’ was.

But I didn’t know what ‘Stage 3’ was. I didn’t know how the stages went, so I looked into that to find out the different stages and the different levels. So I did a little bit of investigation then.

How did you feel when you found out what it meant?

Cross, because I hadn’t been told, and that was in the summer and… And when I asked for my medical referral letter as well, a copy of that, I was given my past history which goes with referral letters, and I did see in the late 2000s, I’m not quite sure which year it was, that it mentioned kidney failure there. And I thought, well I have never been informed of this. So whether that was a financial decision from the practice or whether it was a, what decision they made or whether no decision was made, it was just a passive thing that was on my record and there it was.

Did you tell the GP you felt angry?

Well when I first went to the casual surgery I said, ‘What’s this? I haven’t been told. What am I going to do about it?’ And I was just told, ‘Be reassured that it’s quite common and don’t worry about it.’

But you didn’t feel reassured?

For 10 minutes I was [laugh]. Yes. And then as I drove home I thought, ‘No I am not reassured. I’ve decided I am not’ [laugh].

Why do you think GPs might be reluctant to disclose this information to people like you?

Well if there are a large percentage of people with kidney disease, early stages in older people, then I imagine it’s a financial burden if they are going to test all old people, people over 50 or 60, so there are financial implications, there’s time implications. They are very busy already, GPs, so if they have 10%, 20% of the elderly population going in asking for regular blood tests it’s going to be quite a burden. So I have to decide whether I am going to be a burden or not.
 
Some of the people we spoke to hadn’t been aware of their kidney impairment before they were invited to take part in research, and a few others had found out ‘by accident’ in an unplanned manner when they saw a different health professional who assumed they knew, or when they received copies of referral letters or test results. Joan, who had made a point of always asking about her kidney health at her diabetes check-ups, initially thought it was a mix-up when a nurse approached her about taking part in research about people’s experience of early stage chronic kidney disease. See also ‘How did people find out about their kidney impairment?’.

People’s thoughts and feelings at diagnosis were often influenced by the language health professionals had used to break the news. Use of words like ‘kidney damage’ or ‘kidney failure’ could be quite frightening, whereas a description of the decrease in kidney function as a percentage or stage seemed to be less alarming. However, the exact meaning of the figures people had been given was often unclear and they struggled to make sense of formulations such as ‘on the borderline’ or ‘a bit low’ (see also ‘The words doctors used to explain kidney impairment’). Martin had felt worried by the term ‘chronic’; he thought it made it sound more serious than it actually was.

In the context of other serious health conditions, diagnosis of kidney impairment may not seem like a major event. For Tina, it was “yet another thing to add to the list” and she could not really take it in. Kath described kidney health as taking a backseat against her main health problem of coping with pain from rheumatoid arthritis.
 

Tina was diagnosed in hospital after recovering from a life-threatening abdominal abscess caused by her Crohn’s disease. She did not feel able to take in the information at the time.

Tina was diagnosed in hospital after recovering from a life-threatening abdominal abscess caused by her Crohn’s disease. She did not feel able to take in the information at the time.

Age at interview: 54
Sex: Female
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I didn’t really know the full impact of the kidney problems until I actually went, I was discharged from the hospital for that and then I was called back to the kidney unit, and that was when I actually found out, you know, the actual levels, which to be honest, I can’t remember but they were very low, and how bad it was, you know. I don’t know.

And what did the consultants or nurses explain to you about what had happened with your kidneys?

They said that they thought it was to do with the sepsis from the poisoning and all that… had caused it. I mean I’m not disbelieving the consultant, you know, but since, like I said, my mum’s got quite bad kidney function, in fact they were talking of transplant on my mum, my daughter has got it, so whether that was another thing that it is a family trait kind of thing, you know, I don’t know. I, to be honest, it was, dealing with the Crohn’s at the time was bad enough.

And it will sound terrible, but when they told me about the kidneys, I still wasn’t well enough to really take it in.

It was more like, oh, it’s just another thing. Here we go. It’s not until you start to get a little bit better and, you know, mentally your head, your head’s working a little bit better that you kind of think, ‘Wow, this is as bad as the Crohn’s’, you know, but, in lots of ways, worse, if you want the truth. This could really be another life threatening thing.
 
 

Joanne, who also has bipolar disorder, trusts her GP to keep an eye on her kidney function and does not feel there is anything to panic about. Her main health concern is keeping well in herself.

Joanne, who also has bipolar disorder, trusts her GP to keep an eye on her kidney function and does not feel there is anything to panic about. Her main health concern is keeping well in herself.

Age at interview: 50
Sex: Female
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So can you talk me through how you first found out, or how the topic of your kidneys was first brought up – who raised it?

It came back because one of my blood tests apparently my kidney function had decreased… oh no, it had decreased and they said, "Oh we'll just monitor that," and then the next one they said, "Yes still decreased but don’t panic it's not gone off any scale that we'd worry about, it's just that it is decreasing," so it just kind of come up in conversation as talking about as- where things had happened.

So this was a couple of years ago now?

Yeah and more recently… a comment was just made that another doctor was reviewing my blood tests and when I phoned up for my blood results which they normally say is “yes it's satisfactory” or “nothing to worry about”, they said, "Oh you need to make an appointment, the doctor wants to discuss this”, so I made an appointment, went to see the GP I normally see and she said, "I think the other doctor was getting a bit concerned about this; he hasn’t been reviewing what you’ve been on and it's nothing to panic about, it's just that your function has slightly decreased but nothing that we were terribly worried about at the moment, so don’t panic."

OK and how did you feel about being told not to panic, did you find that reasonably reassuring?

Yeah I mean yeah… if my doctor says I have nothing to panic about, then I would trust her. I say I've known her for a number of years so yeah I would trust what she says. I don’t think there is anything to panic about; I think I've got more things to panic about than… than my kidneys at the moment. I don’t think they're at a stage… they wouldn’t do anything apparently at the moment anyway so.

And what would you say is, from your point of view, is your main health concern at the moment?

Keeping relatively well in myself. Just being generally well. Yeah.
 


Last reviewed August 2017.
 
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