So I went to casual surgery – because we have very good surgeries between 8 and 9 and anybody can go with an urgent problem – and the GP just said, Oh you are older. Most people have this. Don’t worry about it. Let me reassure you it’s not unusual. I’ve probably got some too. Let me just tell you not to worry about it. And so I went home reassured for 10 minutes and then I thought, No I am not reassured. So I wondered what to do. So I decided to get in touch with the two kidney charities, who were extremely helpful, talked to me for quite a long time about kidney disease, very supportive and they’ve sent me some literature and that’s where I found the advertisement about this research study. So that’s helped a great deal and I still don’t know a lot about, very much about kidney disease.

So have you been back to the GP since then and spoken to them?

Yes I have about my back problems and another GP and they just suggested that it wasn’t unusual for somebody older to be in Stage 3 kidney disease. So I am still a bit concerned and feel that I should investigate quite a lot more.

So the information you were given about its stage three and it’s not the worst stage, where did that come from? Who told you about all those things?

The, my local doctor here.

When you came to register.

Because I because I asked, yes, I said, you know, I said, Well, how bad is it? I mean should I be worrying about this now? And she said, No. No. She said, But you’d have to get down. I’m pretty sure she said it would have to get down to thirty.

But I don’t really know what the numbers mean. I know she said they ought to be sixty something and mine was fortyish. But it, until it got down to thirty, they wouldn’t test me on a regular basis. They said it wasn’t necessary but, so I said, Well, how low does it have to get before you get onto dialysis? And he said she said, Only, oh, about ten, you know.

But you don’t know what the numbers stand for?

I don’t know what they mean.

The GP I currently have, who isn’t the GP I saw when I first moved here, has explained more to me, I think, than any other GP. I now understand what the readings mean and what my actual kidney function is. It wasn’t something, in fact it was only – I’m trying to think a couple of years ago that I really understood exactly what was being monitored, so, and I was, I was aware of that but then as I say, my current GP has explained a lot more to me, so I do understand that. And it puts it more, I guess from my point of view, it’s made me realise that, I think I do kind of look after myself, but it’s made me realise more the importance of really making sure I do all the right things to maintain the level of function that I’ve got, you know. As my GP said, you know, if I had the level of kidney function I’ve got if I was 89 it would be fine but given that I’m not 89 it’s not so good [laughs]. But as I say, at the moment, it doesn’t affect my life in in any way. So I want that to continue for as long as possible.

Well I was sat with the doctor talking and hed gone through and shown me on his computer, had gone through my files and he had shown me all the different graphs and for the first time I was truly shocked at the readings that they’d got from my kidneys working. And he sat there and he just went through it.

And I had a better understanding and also a better understanding of him, and just as I was going he said, “I’ve explained to you,” he said, “would you do me a favour and take part in this?” And I thought, ‘Well if he can take the time to do that and put my mind at rest, then I can take the time, if I can, to put somebody elses mind at rest.

That’s really kind. So when he was showing you stuff on the computer what was it you were looking at then? Was it the different?

All the different graphs that the renal place had sent to him.

Yes

To the surgery.

So that wasn’t something you had a copy of before?

No because it was taken over a long period of time.

Hm mm

And the graph was it was going up and down and it-to be truthful you can sort of work out now that’s when they said, “Well just- well just check that.” And then another time when, in the letters, the consultant said, and I had the bloods re-tested. And then you can relate the two and you understand better what they’ve said in the letter.

Right OK so you were basically looking at a curve?

It was well it was yeh, yeh

Was it fluctuating quite a lot?

Yeh, yeh

Yeh

And then when he went onto to the next page and you could see it was starting to level off.

And that’s where you could see it had stabilised?

You see, now nobody had shown me that; now they won’t show you at the hospital because they’re not doing it. And the old GP, I don’t suppose hed even bother to look at it.

Mm so that was really reassuring to you to actually see that development over time?

Yeh

I believe when I went to the kidney unit I was given leaflets. I was, because I remember coming home and looking at them and not being sure I understood properly. I mean you can look at a leaflet and they can come up with all this medical jargon, but really you need somebody sat there actually saying, Well, this is what this technically means.

If you’re not familiar with that, and I certainly wasn’t, when I was nursing I wasn’t you know, familiar with kidney problems. The terms and that, I think all these leaflets are all very well but what you really need is somebody telling you face-to-face. And that’s if they’re ready to hear it face-to-face. A lot of people aren’t. It it’s, you know, I don’t think I’m on my own there, you know, I know other people with health problems and they’re, Oh Christ, here we go again. But if you’re going to, if you’re the kind of person that wants that knowledge and maybe you’re lucky enough that you’re only suffering from one condition, well, go for it. But I think there always seems to be other problems, with not just myself, but other people, you know, with conditions, and what people, healthy people must be thinking, How can’t you want to know what’s going on with your body?’ And I think, Put yourself in my shoes. If you had all what weve got, you would want a little bit to be a little, stay out of the way a bit.

And until I saw the renal specialist, to be honest, the only person to give me any information because I go so often for the warfarin blood test you get friendly with the nurses and I am not a quiet person. And I went in for a blood test and the nurse said, “What’s wrong with you, you’re quiet?” And I said, “I’ve got leaking kidneys and I don’t know what’s going to be,” you know. So she said, “Well that’s alright. Got a minute, I’ll go through it with you.” She actually told me more than the doctor.

Oh

And she also, she put me right in as much as to say, “They’ll do the test, they’ll find out what’s wrong, they’ll do the tests and then they’ll treat it. So don’t worry because until we know it’s something that’s dangerous or, you know, sort of serious, it’s not.”

Right so let me take me back. So you saw your GP, you got quite worried; you then saw the nurse who asked you why you were quiet and you said you got better information from her. What can you remember what kinds of things she told you?

She took my blood samples and she got rid of everything that we had to do, like you know the blood pressure and all the rest of it, and then she said, “Right now you have two kidneys And think of sponges; and fluid goes in at the top and it’s filtered; and the kidneys, that’s what the kidneys do. And as a rule all protein they take out before it goes into the urinary tract or whatever; and at the moment you’ve got” she said, “it might be both it might just be the one that isn’t quite filtering as it should. And theres plenty of reasons why it happens and theres plenty of drugs that they can give you to stop it happening. And you’re not on your own because theres plenty of people in your boat anyway, [laughs] so don’t worry about it.”

And I said, “And what happens if?” She said, “Well if that does happen I’ll be the first one and I’ll be with you and I’ll tell you.”

Mm. If what happens sorry?

Well I said what if the worst happens if, you know, it’s all very well saying, “We can give you medication, don’t fret,” but then you think there comes a time when they’re not going to be able to give you medication.

Mm but so did you feel slightly more reassured after talking to the nurse?

Yes.

Have you ever looked for additional information about health from other sources or like using the internet or using books or something?

Harry: No and I’m a bit anti I know too many people who spend all their time trying to diagnose their own problems. They end up with totally the wrong information because they’re not I could mention names in this but I won’t [laughs].

Nell: You’re thinking of your sister, [sister’s name], who was told by the doctor she.

Harry: I have a I have a sister who spends all her time.

Nell: Needed a hip replacement.

Harry: And shes had every illness, every condition under the sun because she spends far too much time looking at the internet. So no, I don’t think, I think it’s much better to go and talk to the doctor than to worry about trying to diagnose it yourself.

I got some books in the beginning. I think they were from the library. Unfortunately I didn’t record the names of them because theres one I would have like to have re-read. Luckily I was contacted by the, I think it’s the Kidney Federation, and they send a magazine every so many months, which is full of very good information. They’re full of information; you can contact them and ask them, ask them about things, and they produced a book, I think it’s Kidney, kidney disease explained’, or something, which is very helpful. And I think the magazines have been very useful in telling me what it’s like for different people, and the different medicines that are used, the different types of kidney disease there are, and all that sort of thing.

No I looked up the NHS site on the on the internet and it said that most people have, you know, when they get to my age, have got some problems with their kidneys.

Did you find that information helpful?

Yes, I did. Yeah, yeah. It’s a good site, the NHS.

That was NHS Direct was it?

Yeah.

Or?

Yeah. No, no, I didn’t, on the internet.

They’ve got, you can just any illness or condition you can find on there. I thought it was quite good. And I also looked on the Mayo Clinic, the American site as well. I mean I- I’m a great believer in the internet but I think you’ve got to be very careful whatwhat credence you give it. And so I’ll only go on a well-known reputable site like the NHS or the Mayo.

And can you remember the kinds of things you wanted to know and that you learned from the website?

I can’t because it’s, it didn’t it didn’t worry me that much, to be honest with you, and I thought I’d just check and it didn’t, it just said that most people got it and you know? it’s so it’s so it’s life.

Do you ever try to get information about your health from other sources than from the health professionals directly?

Don’t think so no.

You don’t look up things on the internet or books?

Well yes, I’ve looked on internet when I had all this passing blood. In fact I went religiously through all the different sites about and it’s more worrying I think when you start looking at it all because they’re saying the slightest sign of blood see your doctor or your hospital. I mean I was passing gallons of blood! and day after day and every time I went to the toilet, every time I went to passto the toilet I was passing blood. And it’s, “Oh yes well see that and then give you antibiotics and oh yeah well see you in three weeks’ time for” And this was supposed to be such a serious thing they keep telling you how serious it is if you see any blood in your urine, [laughs] you know, see your doctor immediately.

Do you remember which sites you looked up on the web?

No lots of them lots and lots of them. No and I would pass from one to the other and . no I wouldn’t know which site. I would just Google blood in urine, male; blood in urine and then just pass that and then you click on each one and it tries one and I’d go each one and you’ll get further and further into it you know. I went into for the prostate ones I did do it for that as well. Never did it for my cataracts I didn’t want to know really what they did with your cataracts because I’m a bit uncomfortable[pulls a face].

And for the blood in the urine did you find anything that was helpful to you?

Well helpful it’s I don’t really know if I could say it was helpful you know; more disturbing than anything else you know because they were making out it was could be very serious and I don’t think I should have gone I was kind of reluctant after I was kind of sorry I’d gone onto the sites I think you know what I mean because they were telling me things I really didn’t want to know.

They were saying how very important it is to get seen to, and I was seen to but they weren’t doing anything you know so. So to that extent I was a bit disappointed you know but