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.
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.
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.
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.
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’.
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.
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.
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.
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.
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.
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.
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.
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.
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.
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.
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.
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.
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.
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.
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.
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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