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.

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 theres 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.

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.

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.

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.

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.

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.

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 weve, 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 theres 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.

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.

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.

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-, weve 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.

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.

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.

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, well monitor it and if things change or get any worse, then well 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 peoples 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 ones 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.