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; were 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.

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.

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 thatI 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.

When I went to the walk-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.

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.

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.

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 hed 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.

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 wifes 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 hes 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.

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, theres 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’sfor 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.”

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.

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 wasslightly 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?

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 theres no rhyme or reason for it but that’s the only awareness I had of it, you know, at the time andI 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.

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. Andthe diabetes checkinghe 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. Theres 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.

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, theres 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.

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.

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 well 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 wed 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.