Awareness of kidney disease and beliefs about possible causes

Public awareness and media coverage of kidney disease is relatively low compared to other conditions, such as heart disease or cancer. Many people we spoke to knew that the kidneys are a vital organ, that they act as a filter to remove waste products from the blood stream and that they are somehow connected to ‘the waterworks’. However, the term ‘kidney disease’ may make people think of kidney failure, transplants and dialysis. As Jim put it, ‘I knew you could get kidney failure and things like that, but I didn’t realise you could just get something small wrong with them’. Some people thought there should be more advertising of kidney disease, especially what causes it, why kidneys are important for the body to stay healthy and what people can do to keep their kidneys healthy.

Xanthe feels that kidneys are not a subject that people like to think or talk about but that their profile should be raised.

Age at interview 72

Gender Female

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One doesn’t think about kidneys. Well, they are there, sitting there tucked away. You don’t think about them as long as they are functioning. It’s other people who have kidney transplants and related kidney ailments. Not someone who is galloping around and seemingly very fit. So that is quite a shock and you start to wonder where it is going to lead, and what might happen in the future. You think about, Will I end up on dialysis? How will I cope with that? Where will I go for that? Will I even move and live near a dialysis unit?’ Theres a lot of food for thought there. And you talk to other people about it and they maybe say, Oh you’re ok just look at you. You’re fine. Because kidneys aren’t something we talk about a lot. They are not an emotional subject like heart’s, which is probably the most emotive part of us, or brain. They are just something we don’t talk about much. But they are absolutely vital to us and failure can [sigh] drastically alter your life, if not take you altogether.

Ok. Do you think there is enough public awareness of kidney impairment?

No. No I don’t.

What could we do to improve that?

Put them on a level with the other vital organs: the heart and the lungs, I would guess. That’s not a very scientific answer is it but it’s the best I can think of.

It’s common sense.

Every day we hear something on the tele about wonderful heart units and such. We don’t hear much about renal units do we?

No.

Renal problems are disgusting. They’re elderly people wearing incontinence pads shut away in. Let’s forget they are there.

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Joanne thinks there should be more promotion in GP surgeries of the function kidneys have in your body and how to keep them healthy.

Age at interview 50

Gender Female

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How do you think people could be made more aware of kidney disease?

I think GPs, I mean they promote a lot about don’t smoke, healthy living keep fit you know, in surgeries. I do and in like mental health you name it, they promote sort of have posters and things up but theres never I’ve never ever seen anything that I recall about kidneys and why kidneys are important. Now I know about kidneys, I mean did kidneys in biology A level, you know O level and A level so I do know a bit about… But it’s not promoted like your lungs are. Well if you don’t have kidneys you’re going to die unless you can get a transplant or whatever and yet people know about oh if your, you know, lungs pack up you’re going to die, but people don’t understand that kidneys are a very, very important organ of your body. Yeah you can afford to lose one that’s fine most people can afford to lose one. Some people only have one, most people have two, but if they are diseased and don’t work then it will affect your overall health and people don’t understand that.

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We asked the people who took part in this study what they knew about possible causes that can lead to a decrease in kidney function and whether they had any thoughts on why they themselves had developed a mild kidney impairment.

People mentioned several factors that they thought were likely to harm the kidneys, including medicines, high blood pressure, genetics, alcohol and lifestyle. However, several felt uncertain when it came to possible causes for their own kidney impairment and a few people were concerned whether they could have done something to bring it on. Some had received information about causes from health professionals but others hadn’t, or weren’t satisfied with the explanations they had been given.

Bernard doesn’t know why his kidney function should be impaired, but his wife, who has a nursing background, suspects it is to do with ageing, not helped by his diabetes.

Age at interview 79

Gender Male

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And what are your ideas about what has caused you to develop problems with your kidneys?

Bernard: I’ve no idea. I haven’t got a clue! Apart from the fact that, according to the wife, I don’t drink enough but in terms of alcohol and all that sort of thing, which I would expect to have a little bit of trouble with, I don’t drink.

You don’t drink any alcohol at all.

Bernard: No. So why they should be as they are, I’ve no idea.

And what about you [addressing Shelley]? What are your ideas about why he has developed problems with his kidneys?

Shelley: Well, the diabetes doesn’t help, although hes not on any treatment for diabetes. I just think it’s his organs are wearing out. Due to his age. But anything more technical than that, no, I don’t know.

And are those the kinds of questions that you have discussed with either the nurse or the doctor? Have you asked questions about why it might be that you have developed kidney problems?

Shelley: No, not really.

Bernard: No.

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People varied in the personal importance they attached to understanding exactly why their kidneys had decreased in function. Xanthe felt ‘cross’ because she thought of herself as having led an active and healthy lifestyle and therefore found it difficult to accept that she had not been rewarded with good kidney health. Joanne was not too bothered about knowing a definite cause.

Jackie Z thinks long-term use of Voltarol (diclofenac), which she was taking to cope with joint pain, may have damaged her kidneys but she hasn’t discussed this suspicion with her GP.

Age at interview 70

Gender Female

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It might be to do with the fact that I’ve been given things like I used to be taking Voltarol which has been withdrawn of course, and it might have been that they were checking on patients who took that because it could affect the kidneys and that’s quite possibly why it was, because I had that for years. And then suddenly it was realised it was potentially dangerous and taken off it, so that’s probably why I’d imagine.

And how long ago was that that your GP asked to test your kidneys?

I’m guessing now, how long have I had the naproxen? One or two years, let’s say two years, it’s not long term. It was- basically it was when the Voltarol was withdrawn.

So that was the explanation you got from your GP, it’s to make sure that your kidneys haven’t been damaged by taking the Voltarol?

They didn’t mention the Vol- no.

No

No they just said, “Let’s make sure everything’s alright, let’s have a kidney check,” so I did.

So it’s just that is your assumption that it might have been to do with that?

Yes. Yes, that’s my assumption.

Hm mm. So you didn’t really get any explanation in particular of why this particular test needed to be done?

No, No. I didn’t but then I didn’t ask for one particularly.

Mm so it didn’t actually concern you at the time?

No! [laughs]

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Joanne doesn’t know whether her decrease in kidney function is due to age or her medication or both she is not too concerned to know the exact cause at this point in time.

Age at interview 50

Gender Female

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What are your thoughts about why you have developed kidney problems?

I don’t know. From talking to people and reading stuff it could be my age because I understand that late forties, early fifties your kidney functions naturally decrease, so it could be my age and it’s just, over the last few years, gone down to due to that and it could be that my kidney function stays where it is now in which case theres not much point to worry about it. It could be that; it could be as a result of long term taking lithiumit could be a combination of those. So I don’t know.

Would it be important for you to know?

No because what’s happened in the past has happened so you can’t go back and turn the clock back. I would hope that my- my kidney function is continued to be monitored and if it does change then maybe they would do a review of my drugs and maybe decide what were going to do from there. I think at the moment it’s you know, it’s within a range that people could naturally get to my age so don’t panic, well just monitor and if things do change then well make a decision about what were going to do.

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Kidney function often decreases as people age (see ‘Why is kidney health important?‘). Some older people we spoke to felt it was neither surprising nor dramatic that their kidneys had ‘slowed down’ alongside other bodily functions (see also ‘Expectations, hopes and concerns for the future‘). For example, Margaret said ‘I’m seventy two, you know. I think, well, I’ve had my life, so if I get something wrong with me, well, so I’ve had my bit.’

From a GP perspective, controlling high blood pressure, possibly with the help of blood pressure lowering medicines, is the main clinical target for patients with a mild kidney impairment to prevent further decline. Not everyone we talked to seemed to be aware of the links between high blood pressure and decline in kidney function (see also ‘How and why is kidney function monitored?‘).

Kidney function may be damaged through the long-term use of certain prescription drugs. For Simon, kidney damage has been caused by taking lithium for bipolar disorder since he was a teenager. Kath and Lesley knew that their anti-inflammatory medication for arthritis had affected their kidneys, and Peter’s kidneys had been affected by high dose diuretics (water tablets) he had needed for his heart. But others, who had not been given such a clear-cut explanation, also wondered whether medicines they had taken in the past could have had a negative effect on their kidney health. Margaret knew that high blood pressure can damage the kidneys but hadn’t known that the very drugs prescribed to lower blood pressure could also cause kidney function to decline in a small minority of patients, as had happened in her case, so close monitoring of people taking certain medicines is essential (see ‘Controlling blood pressure‘).

People with family members who had also experienced kidney problems often wondered whether there was an underlying genetic condition running in their family. Mike, at age 36 – the youngest amongst the people we talked to – wondered whether there was a risk of passing on his kidney and thyroid problems to future children. Jill and Jackie, who had a history of kidney or urinary tract infections, wondered whether this had made their kidneys more vulnerable to decline.

Tina was told her kidneys have been damaged an infection from a burst abscess, but as her mother and daughter also have kidney problems, she wonders whether there is also a hereditary vulnerability.

Age at interview 54

Gender Female

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And has, has it been explained to you, or have you had any ideas yourself, about what might have caused your kidney function to go down?

Only them they were saying it’s, We think it’s the sepsis

Yeah. [mm]

had had caused it and, like I said, I don’t know. I often wonder whether the sepsis probably really probably put it into nose dive, but whether there was maybe a slight problem there before because my mum and my daughter have, you know, they’ve both, well, and my brother.

What kind of diagnosis do your mum and your daughter have?

My mum was actually waiting for a kidney transplant.

Well, my daughter, my daughter had a thing called HSP. I think she was about thirteen. It’s something Henoch-something…

Henoch-Schönlein, I’ve just read about it, yeah. HSP, yeah.

They didn’t.

So she had that when she was thirteen.

They didn’t expect it in somebody [daughter’s name] age. It usually happens to about seven-year-olds. Got a virus on the Christmas. Come down the stairs one night, Mum, look at my legs. Very similar looking to meningitis. We done the glass test, it didn’t move the actual spots.
Took her to the doctors. Shes seen God knows how many people because, in fairness to them, they weren’t looking at somebody [daughter’s] age with this thing. They eventually diagnosed that she was taken into the children’s hospital in a lot of pain and it affected her kidneys. In fact, [daughter] got one half of her kidney that doesn’t work.

Something about the crescents in the kidneys wasn’t right or had died or something like that. But they put that down to when she got this Henoch but then [daughter] hadn’t been well for quite a while. So [daughter], again was what they say long terms observation, you know watch all this. And then, when my mum became, when it became quite that they were talking transplants, you know, maybe one of us could give her a kidney, they wouldn’t look at me, my health, didn’t want to know. My older brother, they couldn’t because hed been born with jaundice and hes since had hepatitis. My sister is not in the best of health, you know, The younger brother suffers terrible with blood pressure so he, there wasn’t really an option where they looked at any of us and thought we can’t. [Daughter] wanted to and I said to her, You cannot do it. Why not, mum? Why not? And I said, Because you’ve have kidney problems yourself, you know. The kidney people aren’t, they’re going to look at you and think, no, I can’t take the risk.

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Jackie wonders whether an untreated kidney infection was the trigger for her decline in function or whether there was an underlying familial problem that caused her to have recurrent infections in the first place.

Age at interview 59

Gender Female

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So what do you think caused the kidney problem in the first place?

Well, that was never really established. There was two schools of thought, one was that I may have been born with some problem that made me prone to get the infections. The other, the sort of school of thought is that I, my kidneys were fine, I got an infection that wasn’t treated, and that caused the problem. I know my kidneys were damaged with the infection. I may have been born with perfectly healthy kidneys and ureters and all the rest of it but I’ve never actually found out what it was, and I don’t know whether it was known at the time, I mean whether, I think it would be different today because often they can pick up things a lot sooner with ultrasound scans and things like that.

More recently, I have wondered if I did have a problem, because one of my sons has subsequently had to have a kidney removed because he had a problem with the junction, the valve in his ureter. He was getting back flow, as an adult this this was, so part of me wonders whether I did have something and it was passed onto him and didn’t manifest itself until later years in him. But as I say I don’t know.

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Recreational drug use, diet, and in particular, drinking alcohol, were all mentioned as likely influences on a person’s kidney health, though few people had discussed their assumptions with health professionals.

Eric wonders whether heavy drinking during his time in the military may have contributed to the development of a mild kidney impairment. He hardly drinks at all now.

Age at interview 79

Gender Male

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Do you have any thoughts about why you might have developed this problem with your kidneys?

I used to be a party animal. Being in the military it’s very easy to be a party animal. The drinking may have had something to do with it but I’m not sure. I think drinking would more likely affect your liver than your kidneys. I think this is just something with my kidneys which is that they’re not functioning as they should do, but at seventy-nine years of age I accept that.

Has your GP ever offered you any lifestyle advice?

No [laughs]. I was a party animal long before I knew my GP.

Do you still drink a lot now?

No, no I hardly drink at all now. See I’ve gone from I stopped my drinking heavily in when I was fifty-five – twenty-four years ago and now I don’t even go out to pubs. I go out to pubs to have a meal but I don’t physically say, “I’m going down the pub to drink”. But I’m not sure whether drinking had anything to do with my kidneys; as I say, I think if my liver had failed I would say, “Yeah I know what caused it”, but I’m not sure what caused the kidney problem. You know, if doctors can’t tell me how can I fathom it out?

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Mike wonders whether his kidney health may have been affected by excess weekend drinking when he was a teenager and young adult but has not discussed this question with his GP.

Age at interview 36

Gender Male

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And what is your understanding why you have developed a kidney problem?

I don’t know it might have been lifestyle because I used to drink quite a lot on a weekend you know? When I was a late teenager and early twenties I’d go out and I’d drink alcohol on a Friday and a Saturday night and to excess. I’ve never been into hard drugs or anything like that so that but obviously the kidney is filters all the alcohol and whatnot and there was quite an extended period of time where I’d usually, I’d drink most weekends. I don’t do that now and I’m, you know I don’t really drink alcohol you know; it’s not something so that could have been a contributory factor, if theres a problem, to that problem. You know and yeah it’s foolish behaviour and, you know, that’s

Is that just your personal reasoning or is that something you’ve discussed with a health professional?

No personal reasoning, no I’ve not no, no I’ve not no I’ve not sort of had a discussion about that.

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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....