A-Z

Kidney health

Expectations, hopes and concerns for the future

We asked people what they expected to happen to their kidney health in the future. No one could be certain what the future would hold, some saying they would prefer not to think about it unless their kidney performance dropped to a level where they required treatment. Harry said that at age 78 he expected to have health problems. Some said they would like to find out more from their doctor about what could happen to their kidney health.
 

Harry doesn’t know what will happen to his kidney health in the future but would not hesitate to see his GP if he became concerned. He expects things to go wrong at his age.

Harry doesn’t know what will happen to his kidney health in the future but would not hesitate to see his GP if he became concerned. He expects things to go wrong at his age.

Age at interview: 78
Sex: Male
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Now looking towards the future, how do you think your kidney health will be in the future?

Well, I haven’t, to be honest, I have no way of knowing. But if I feel that I might have a problem, I would have no hesitation. I would go and see the GP, explain the symptoms and… expect the GP to give me advice and…

But I, it’s certainly something, I think as you get towards the end of your time on this earth because, you know, none of us are finite [means infinite] and we certainly aren’t [laughs] you are conscious of the fact that things start going wrong. So, you know, one has got to react to that when it’s obvious that something is going wrong and…. in a way, you just can’t spend all your time trying to prevent everything because you can’t do that, you know. Something will catch you in the end.
 
 

Ken would like to know the likely outcome of his kidney condition and whether he could do anything to prevent it progressing.

Ken would like to know the likely outcome of his kidney condition and whether he could do anything to prevent it progressing.

Age at interview: 72
Sex: Male
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What sort of information do you want to learn about it?

Well I suppose really the bottom line is, you know, how things are likely to go in the future; is there anything I can do to try to alleviate the problem? I doubt whether there's any medication because I think I would have come across that on the online review. And I guess ultimately, you know, what is the long term prognosis? Yeah.
 
It was common for people to hope and expect that their kidney performance would not get any worse than it was now and that it wouldn’t cause them any ill health. Some said they hoped or expected to live to old age, while Donald and Jill prioritised quality of life over quantity.
 

Simon hopes that his kidneys will work sufficiently well for as long as possible so that they don’t cause him any problems. He is grateful that his condition is being monitored.

Simon hopes that his kidneys will work sufficiently well for as long as possible so that they don’t cause him any problems. He is grateful that his condition is being monitored.

Age at interview: 56
Sex: Male
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What do you think might happen with your kidneys in the future?

Well, I can’t donate them. I did ask. But I just hope that they do the job that they’re supposed to do for as long as they’re, as they can. I mean, obviously, I’ve had a few things that have made me sit up and take notice recently. And my health has been - what’s the right word? - compromised on  many levels. I just want to live as healthily as possible but I’m very grateful that people who are in in the know, are watching it to make sure that, you know, anything that I can do to help or need to do is being done.
 
 

Donald wants to enjoy a good quality of life for as long as he can but doesn’t want to live beyond a certain age if it means being ‘stuck away in a nursing home like a vegetable’.

Donald wants to enjoy a good quality of life for as long as he can but doesn’t want to live beyond a certain age if it means being ‘stuck away in a nursing home like a vegetable’.

Age at interview: 60
Sex: Male
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No. Eighty will do me fine; I'm not planning to be on this planet much longer than that anyway. Twenty years to go so let's enjoy it. But I think quality of life is very important, you know, I think it's very important to have… are able to fulfil in your life the best you can do, and at the end of the day get off the stage, let's face it, you know, who wants to be stuck away in a sort of nursing home, you know, like a vegetable, like a cabbage? That's not what I want, certainly not. Just be able to get on with your life and enjoy as long as you can, that's the most important thing. If I get to three score and ten I'll be quite happy, you know, but once you get into your eighties you've had a damn good innings, really have, yeah.
People commonly expected that their kidney performance would remain stable because of taking medicines to control their blood pressure or having stopped a drug that was thought to have caused their kidney problem. Others hoped for an improvement. Kidney performance can vary but is more likely to slowly reduce rather than improve over time. Some people we spoke to had experienced an increase in their kidney performance after altering their medication.
 

Laura expects her kidney performance to remain stable because her blood pressure is being controlled with drugs and she is also using complementary approaches to look after her health.

Laura expects her kidney performance to remain stable because her blood pressure is being controlled with drugs and she is also using complementary approaches to look after her health.

Age at interview: 60
Sex: Female
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And my blood pressure, but my blood pressure is controlled, so you don’t, you don’t know whether these things are doing good or not. The only thing I can look at is the fact I haven’t changed very much really in the 16 years that I've had it, so I have to assume that I’m doing something right, unless it’s just the blood pressure tablets. I don’t know, I'd like to know, I’d be really interested in knowing anybody who’s had kidney disease as long as me, about the same, and how are they? How many other people are there that still haven’t failed very much?

Because when I was first diagnosed I was told that the chances of me failing in ten years were a third, so whether that’s still true I don’t know, so that, you know, at that time they, I think, they hadn’t really sorted out the blood pressure treatments. I think lisinopril is probably one of the very good, is it the AC? I can’t remember, I think it’s an ACE, I can't remember. I think that one might be the one that’s helping, I don’t know, or it could be the complementary medicine that I’m using.
 
 

David hopes that if he looks after himself his kidney condition will not get any worse, and believes that it could even improve somewhat.

David hopes that if he looks after himself his kidney condition will not get any worse, and believes that it could even improve somewhat.

Age at interview: 78
Sex: Male
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So what's your understanding with regard to the damage that you’ve currently got on your kidneys, is it something that you think is going to get better again or it might get worse or it's just going to stay the same?

Well as I understand it, if I look after myself it's not going to get any worse and there is the possibility that, with good care, that your kidneys can repair to a certain extent. That’s my understanding. It's only… I can't say that I've been categorically told that but little snippets that you get that a kidney can repair to a certain extent, it can never repair itself one hundred percent.
 
The desire to achieve stable or improved kidney performance was a strong motivator for some to look after their health in the hope that it would benefit their kidneys (see ‘Lifestyle changes’). Joanne and Jackie Z weren’t sure there was anything they could do to protect their kidneys from further decline.
 

Simon feels there are things he could do to improve his health, such as losing weight.

Simon feels there are things he could do to improve his health, such as losing weight.

Age at interview: 56
Sex: Male
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Do you worry about the future and your health?

I try not to. I think I’m like everybody else. It isn’t a case of burying my head in the sand. It’s a case of get through every day. And sometimes, I know it sounds very corny, but I do, do feel grateful that with each day that comes because I have been through an awful lot. But, at the same time, I feel that I should try and do all I can to make it as good for myself as I, as I possibly can [laughs]. I really would like to try and lose some weight. I really do feel my health could be better and there are things that I should be doing that I’m not doing. But, at the same time, as far as any medication, I’m receiving any medical support that I have, you know, I’m very happy.
 
 

Joanne doesn’t know if there is anything she could do to help keep her kidneys at their current level of performance or even to improve.

Joanne doesn’t know if there is anything she could do to help keep her kidneys at their current level of performance or even to improve.

Age at interview: 50
Sex: Female
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How do you think your own kidney health will be in future?

I've got no idea. I'm hoping it will be as it is now. I'm hoping that we've, it's come down to whatever it's come to and I'm hoping that… that will be it and it will just settle there… and it won't go any further.

Do you think it could improve again as well?

I've got no idea.

Do you think there's anything that you could actively do to keep it healthy?

I've got no idea.

But by and large you'd say these are concerns that are not right at the front of your mind at the moment?

Yeah. …But if they were- well I wouldn’t know. I wouldn’t know what I would need to do to keep my kidney healthy or healthier than it is, I wouldn’t know what to do about that.

Yeah

So yeah.
 
Others were convinced that their kidney performance would not improve regardless of what they did or because they were growing old. Eric expected his kidney performance to go down but not to fail completely. Lesley’s kidney performance had reduced a little and she was concerned that it might go down to a dangerous level before any of her doctors would check it routinely rather than her having to ask for a test.
 

John believes that at age 75 he is ‘over the hill’ and his health will only decline, meaning that his kidney performance will not get any better.

John believes that at age 75 he is ‘over the hill’ and his health will only decline, meaning that his kidney performance will not get any better.

Age at interview: 75
Sex: Male
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How do you think your kidney health will be in future?

Well, I suppose it’ll be like the rest of my health. You know, it’s not going to get better is it, not my health generally is- is- is in decline, you know. I’m past my sell best-by or sell-by date so …to be realistic, [sighs] I’m in the general decline, you know, just I’m over the hill and I’m gradually sliding away [makes sliding motion with his hand], you know? I’m seventy five so I’m not going to live forever.
 
 

Lesley is concerned that her kidney performance may progress to a serious level within a few years and is frustrated that her GPs have not been monitoring her regularly.

Lesley is concerned that her kidney performance may progress to a serious level within a few years and is frustrated that her GPs have not been monitoring her regularly.

Age at interview: 58
Sex: Female
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Well as far as I understand it isn't going to get better. My level was at 60, it's now at 56, it's been at 53 – I can't see it going to 70 or 80 or 90 even, so I guess it's going to drop. It's dropped seven in the last two… just over two years but if it dropped another seven in the next two, and another seven in the two after that, then I'm looking at a serious condition. But if it drops like that each time, or whether it eases itself out because of my diet maybe, I don't know, but I can only help myself on that.

And it makes me think that because I've asked for my blood test to be done and I've asked for my results, it makes me think that I'm going to be at a reading of maybe 40 or high 30s before I see somebody regarding my kidney problem. And I think that's pretty poor, because anybody who can try and help themself before it gets to that stage is maybe helping to prolong to get into that stage, that's what I think.
 
Lesley had looked up the symptoms of kidney disease on the internet but other people said they wouldn’t know what signs to look out for of worsening kidney health. Some people often wondered whether symptoms they experienced might be related to their kidney health, such as occasional twinges in the lower back.
 

Bernard and Shelley have not been told what signs to look out for of worsening kidney health, but Shelley has looked for information on the internet.

Bernard and Shelley have not been told what signs to look out for of worsening kidney health, but Shelley has looked for information on the internet.

Age at interview: 79
Sex: Male
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And are you aware of any other symptoms that might be an indicator of the kidneys not working properly?

Bernard: No.

It’s not something you’ve been told?

Bernard: [to Shelley] you know of anything like that?

Shelley: No, well, I know… I know what means, passing of urine you mean, do you?

I’m not, on the, I’m not testing you for anything [laughs]

Shelley: No, I know.

I’m just interested in your ideas. So any changes in the urine would be like a warning signal to you.

Shelley: Well, not urinating frequently enough. And being thirsty. A thirst as well. His skin is very, very dry. His skin is very, very dry. Whether that’s anything to do with the kidneys?

But again, it’s not something that you’ve received information about from health professionals.

Shelley: Not really.

Bernard: No.

Shelley: With the i-, we’ve got, use of ipads. I have researched some of it.

Right. That’s interesting. What kind of information have you been…?

Shelley: Well, most of the things I’m saying. Really about the dehydration and.

Yes.

Shelley: Infrequency of passing urine… things like that.

And can you remember where you found that information? What did you search for?

Shelley: …Kidney disease. I Googled it. Yes. Just put in kidney disease.

And can you remember, were there any particular websites that you found helpful or more helpful than others?

Shelley: Not really. I didn’t go into it too deeply. I just did a general Google search to see what they said.
 
The future health of their kidneys was not a common source of worry for people we spoke to. Rather, they were aware that it might cause them problems in the future but there was no point in worrying until something happened. Some said they had been reassured by their doctors that a problem was unlikely or a long way off (only two out of every hundred people with kidney impairment ever need dialysis or a kidney transplant). Some hoped that a cure might be found in the meantime.
 

Jackie says she doesn’t actively worry about her kidney condition but is always aware of it and as she has grown older has begun to think more about its possible impact.

Jackie says she doesn’t actively worry about her kidney condition but is always aware of it and as she has grown older has begun to think more about its possible impact.

Age at interview: 59
Sex: Female
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It’s, I kind of feel aware of it and I suppose I’ve reached the age now, it never used to, but then I think because my kidney function has gone down a little bit, it’s there. It’s kind of, I wouldn’t say I’m, like, really worrying over it but I’m aware of it. And, you know, it’s, I guess for the first time I’ve thought of any sort of impact of having this, you know, what it might mean, sort of thing but , so that’s that is a recent thing.
Others had concerns about the possibility of developing a serious kidney problem in future and needing to have dialysis or a transplant. They found the prospect frightening because they had known other people who had experienced such treatments (see also ‘Thoughts and feelings at diagnosis’) or they perceived that dialysis would severely limit their day-to-day activities. However, Flo had felt encouraged by meeting people in the hospital renal clinic who had these treatments and maintained a positive outlook. Laura’s doctor’s comments had caused her concern when she was told sixteen years ago that there was a one in three chance of her kidneys failing within ten years. This didn’t happen but she still thinks about this statistic a lot and whether she will need dialysis in the future.
 

When Laura looked up information on the internet she became scared by what she learned about dialysis because of how it could limit her life if she ever needed it.

When Laura looked up information on the internet she became scared by what she learned about dialysis because of how it could limit her life if she ever needed it.

Age at interview: 60
Sex: Female
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And luckily I’m quite responsible about it all and I have a blood pressure machine that I take, well actually having said that I haven’t taken my blood pressure for a while but I do take it sort consistently and I do, I do take it every now and again to see how I am. So I watch my condition and I, I try to learn about it and learn about different treatments and , which also scared me in the beginning, I saw all the different treatment that I might have to have. Oh the thought of dialysis is absolutely terrifying for me being that I’m a bit scared of needles. And these are quite big needles if you have to have dialysis, so I’m, I do hope that I don’t have to get to dialysis at any point because that would be very tricky, and I could guess that I would probably get depressed at that point possibly. Yes.

Is there anything else about the prospect of dialysis that’s scary or is it just the needles?

Ah well I don’t know if it’s scary but I hate the, I mean basically, depending on what, which type of dialysis you have, you might have to, you know, have three nights a week or three times a week where you’re going to have to go and have dialysis somewhere, takes a lot of time out of your life. I mean even if you’re doing peritoneal dialysis, you know, all the time, all of it's going to take time out of your life and it’s a very big responsibility. If you do it at home you’ve got to have somebody with you to make sure you’re okay, they’ve got a big responsibility. You’ve got to have a room that's clean enough for to have dialysis in etc. etc. It's, the thought of dialysis is difficult because of all the limitations it puts on you, although from what I’ve read in the Kidney Federation magazine, many people live very good fulfilling lives and still having dialysis.

One of the things that worries me is the fact that you don’t feel very well I think. Oh the limit, the limiting on liquids is, that I think what? How can you, how can you limit yourself to that much liquid? Also I like a little drink, which probably isn’t - of alcohol - which isn’t very good for me probably. If I had dialysis what would I do about that? I probably couldn’t because I’d have to concentrate on putting liquids in me that are healthy.
 
In a few cases the possibility of further kidney investigations or treatments in the future had been raised by a doctor. For instance, Laura and Flo had been told that if their kidney performance dropped to a certain level they might need to have a small sample (biopsy) of their kidney tissue removed and analysed in a laboratory to find out the specific cause of their kidney problem. For more about biopsies see ‘Diagnosing problems with kidney health’. Others had been told they might need dialysis at some point. Jim B was currently receiving peritoneal dialysis at home while waiting for a kidney transplant. However, the majority of people asked said these topics had never been mentioned by their doctors.
 

Joanne feels it is appropriate that her doctors have not yet raised the topic of possible future treatments because such information could cause unnecessary panic.

Joanne feels it is appropriate that her doctors have not yet raised the topic of possible future treatments because such information could cause unnecessary panic.

Age at interview: 50
Sex: Female
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And is that something that has been discussed with you, what might be treatment options in the case that your kidneys would decrease further?

No

It's not something that’s been discussed at this point in time?

Absolutely nothing. All I've been told is that I keep having my blood tests, we'll monitor it and if things change or get any worse, then we'll have a look at it.

Mm and do you think it would be appropriate to discuss things in, just hypothetically at this point, or do you think that should be something that should wait as and when function decreases further?

I think if people's… well my kidney function, if it decreases to a point when treatment… then it should be discussed then or when it's getting close to that point. I don’t think it’d necessarily be appropriate now. I don’t think one's at a point where I actually need to give treatment or they can do anything, it's just monitoring. And I don’t think you should panic people either because I think if you start talking about, "Well if it gets to this point, you're going to have go on dialysis and, if it gets further you can be dead, you know, if you can't get a kidney," because that just panics people and I think unnecessary panic is not necessarily a good thing.

I think awareness is good, panic is not good.
 
Last reviewed August 2017.
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