Now I’d like to ask you a few more specific questions around kidneys and kidney function.

Yeah

So, just tell me please in as much detail as you can remember exactly when kidneys were first mentioned by your GP

Phew [exhales]

and what they told you, what tests you had, what explanations you were given.

I really I can’t remember the first time they told me. It must have been quite a long time ago; it must have been about twelve years ago or something like that I would think. And they just told me that my kidneys- my kidneys weren’t functioning properly and I went back, had more blood tests and when I rung up to find out about the blood tests they said, “Oh it’s – everything’s fine,” and everything’s been OK until this last time when I’ve had to go back again and have the, you know, have another blood test done. And now I’m just waiting for the results of that.

So I don’tas I said I don’t really know, nobody’s ever explained to me what is really wrong.

So when, twelve years ago, you were told they’re not working properly, can you remember who told you?

My doctor, my doctor. Because then at one time we used to go and see the diabeticwe used to go and have our bloods done, then we used to see a diabetic nurse which checked, and then wed have to go and see the doctor.

And the doctor told me then that my kidneys weren’t functioning proper.

Do you- can you remember at all what kind of questions you asked at the time?

I really don’t think I asked any questions about it because I wasn’t I wasn’t too sure what it was all about.

[laughs] And what happened next then did you have further tests?

I- Sort of – I just went back and had my every six months I go and have the tests done my blood sugars done and they tell me then whether it’sif theres- and, you know, they never said anything about it again after that until this time.

Was it the same doctor you saw afterwards who then said everything’s fine.

Usually yeah, yeah, yeah.

I didn’t know I had a kidney problem until because of my heart attack nineteen years ago I was having a check-up every three months, and they were taking my blood pressure and a blood test. And it was during the blood test that my GP said to me that my creatinine levels were higher, not terribly high but higher than they should be. And he did explain that really- because I was – I taught PE and games and was reasonably fit my muscle bulk was bigger than average for my size which meant my creatinine levels would be higher anyway than the average person. And that was the position and he said obviously I had a bit of kidney problem and as a result I was advised then to go up to the renal clinic.

So I didn’t have any real treatment for my kidneys and then the I didn’t have any problem until I had started this angina started five months ago and as a result of that they told me that my right kidney isn’t functioning as well as it should.

And it’s only this last few months, since the problems has really emerged as far as I’m concerned because of my heart problems and now linked to my kidney problem that I’ve really been aware of it and not- not worried about it but it’s just a slight concern and the concern’s only arose because of it’s had an effect on my treatment, heart treatment, for my heart condition.

Whilst being investigated for anaemia I had an ultrasound scan of my kidneys in June 2008. As a result of that scan whilst seeing a specialist at the chest clinic in his report indicated that I had chronic kidney disease stage 3A. My GP obviously picked this up when the report was sent to her and since then I’ve had six-monthly blood tests and the results have varied, not considerably, but there has been some variations in the readings which indicate how my kidneys are working. I have never had any problem with my waterworks and if somebody hadn’t told me that I’d got chronic kidney disease I wouldn’t know – I get no effects at all of what is happening to my kidneys.

Well, because of my arthritis, I was on anti-inflammatories, which are by far the best thing for arthritis. And when I went into hospital to have my second hip operation in 2006, when I came round from the operation, I had a catheter in and I’d never had a catheter in before. So I immediately said, you know, Why have I got a catheter? And they said, Well, were just testing your urine output. And then they came back the next day and said, You mustn’t take anti-inflammatories again because they have damaged your kidneys. So, ever since then, I’ve not been on anti-inflammatories, apart from a very brief spell a few, well, only a couple of months ago, when I had a really bad flare-up and my left shoulder was excruciatingly painful. And the doctor put me on anti-inflammatories just for a fortnight, just short-term, to try and kick my shoulder back into proper action. And that helped immensely. But otherwise, I’m not supposed to take them at all.

I knew that anti-inflammatories were always a bit dicey because my mother was on them and she had trouble with her stomach and they had to take her off anti-inflammatories. So I knew there was a slight risk with them but I, it was the first I heard that they could cause damage to your kidneys. I didn’t know that before.

Tell me when were kidneys first mentioned to you and by whom?

Well, it’s about a year ago I guess. I think it may have just been flagged up with the Non-Hodgkin’s lymphoma team. I think it was just mentioned, you know, oh, your kidney function is a little bit on the low side, something like that. They weren’t concerned about it.

And didn’t say anything about going to see your GP. But then I mean hes got access as well to the results of the blood test and it was probably about six months ago that he mentioned it, you know, that there was some you know, just an issue over the readings.

You know, it’s just, it’s marginal.

And what were your concerns or questions at the time? When that was mentioned to you, what did you want to know about it?

I wasn’t really that concerned because nobody seemed to have regarded it as an issue. The rheumatologist didn’t, but there again, that maybe because shes looking for other factors. And the Non-Hodgkin’s lymphoma people they’ve never really mentioned it, just acknowledging that it flagged on the, you know, on the on the list of, because it’s not just the kidney test they do. They do like a full blood count, liver function, various other tests.

And kidney function is just one of the tests. And they just said in passing, Oh, you know, your kidney function is just a little bit on the low side. But no one has made an issue about it and it’s only recently, with my GP really, that he has sort of pointed out like what the figures relate to.

And what the future might have in store.

Okay well I think what happened was basically I was getting headaches. And I’d had headaches for, well they were sort of mild in the morning and then they got worse through the day and I didn’t know what they were. And I had them for about a year, maybe even longer, and I kept trying different things , like I wondered if it was certain foods or was it because I was sleeping near an electricity switch, all sorts of things, and eventually I went to my doctor. And then they put me on a 24 hour blood pressure machine. And that’s when my kidney disease was discovered.

I’m very lucky really because lots of people don’t get their kidney disease discovered until they fail or until they’re very near failure. I was at 50% kidney function when I was discovered and I’m only a little bit worse than that now. That was 16 or 17 years ago that it was first discovered. So yes I think, I think I haven’t failed partly because it was discovered early and that they could they could treat me.

It was a routine check-up. Oh no the other I don’t Oh yes it got nothing to do with it I don’t think. I did ask about the yellowness of my eyes.

The whites of your eyes?

And I asked about that on this particular occasion when I was there. I said, “My eyes whites of my eyes have gone yellow.” Whether that had anything to do with the blood tests I had done I don’t know. Anyway I had these blood tests and that’s when one doctor said I had a little problem so I went back to the doctor that sent me for it anyway and he said my kidneys weren’t functioning properly. So he said, “What weve got to do is keep an eye on them and so every month you have blood tests to make sure that they’re functioning.”

And I don’t know whether anybody’s followed-up on that, I don’t know. So in all fairness, like I said, you get five minutesyou ain’t got time to ask all these questions what about my kidneys, are they OK now?Nobody’s saying.

But ever since last year then so this was last?

I hadit must have been in about the February because I- I had blood tests done every month. I had a long list of them to go in and I- the last one I’ve had was October I think yeah.

So tell me again how the subject of your kidney function first came up and?

Well, I made a, no, I was called in to my, where we used to live, at the health centre, the doctor called me in and said he wanted to talk to me about, you know, one or two health issues. I’m not sure whether he specified what they were on the phone but I said, Okay, well, what’s all this about? And he said, you know, it’s, I really can’t remember exactly what he said but it was along the lines of isn’t it time a lot of this was reviewed, full stop. Because, besides all the heart stuff that I’d had last year and the lithium, bipolar, alongside of that, all this time I’ve had high blood pressure, and they were monitoring that as well and so I’m, presumably, they just did a bit of a screen and there it was, let’s have a look at this.

But, as I said, you know, in my mind, for many, many years, lithium equalled stability and, for that reason, I didn’t interfere with it, neither did any of the GPs that I saw, you know. They, Oh, you’ve done really well. You’re happy, and everything else. I did, obviously, have to take blood tests but they were blood tests and, Oh, your blood tests have come back all right. That’s all you need to know, isn’t it, at the time. You’re not really going to go into the nitty gritty of it. But when somebody says to you – this is when I was about forty odd, you know – This isn’t going to do your kidneys much good if you keep at it, and there are other medications available now. I thought, you know, that was the time that I had a big, big rethink about it and I think it’s worked out okay.

I guess, as I say, it was really only about six months ago I learned that I had CKD and, you know, I’ve had one blood test since then, as part of research, yeah.

Do you think they were checking on it a while before that though?

I think they probably must have been, yeah. But I don’t know the actual point where they decided that I had a problem.

Yeah.

And I didn’t know because I had no symptoms.

When I saw the doctor about something else, and do you know, I can’t remember why I went to see him. It was something fairly innocuous I think, you know.

Yeah.

And I saw the doctor and then in passing almost, he said, “Well of course with chronic kidney disease, you know,” and I didn’t really – I should have picked him up on it actually you know. But I thought, ‘Oh, oh yeah,’ [laughs] yeah.

So that was the first you’d heard of that term?

That was the first I’d heard of that term yeah, yeah. Whether he thought that I’d been told previously, I don’t know, because I’d seen another doctor previously, a different doctor previously. And he said, “Well of course you need to have blood tests, you know.” And I thought it was because of some sort of medication I was on, you know, but didn’t really query why that was.

No.

So, it may well be that seeing different doctors played a part in me not being told that I had a kidney problem, I don’t know, speculation.

So when he said chronic kidney disease you were a bit surprised?

Yeah. I was surprised but I’m not surprised enough to say , you know, I ought to know more about this [laughs] to be honest. He may not have used the word chronic actually, he may have said just kidney disease or something, you know. But I can’t really recall now, but he certainly mentioned kidney disease as a sort of side in passing, if you like, you know. No, yeah OK [laughs] and that was it.

I went for my normal routine check up to have blood tests and blood pressure and water and that. And my diabetic nurse came in with the nurse that was doing the test to send away to have the results come back and she asked me if I’d like to join this programme that you’re running. And I asked her what it was about and she explained in my language that it was due to kidney problems. And I went into defensive mode. I said, No, I’ve never had kidney problems. I haven’t got kidney problems with diabetes. It’s you know, I’ve been told everything was all right. And then she told me that I had a kidney problem that was being monitored regularly and I asked her, How long have I had it? Can you tell me when it was diagnosed? And she said in nineteen ninety seven, which was an absolute shock. [laughs]

We had a short discussion because she had to go and see to other patients and she was under the impression I knew. But my daughter and I had been to the doctors when the results came through before, and I’d asked about kidneys and they’d always said, No, they’re fine. So this really was a bit of a

A shock. I laughed about it at first. I thought that it was a bit of a mix up.

But now I understand there isn’t but yet I haven’t had it explained to me quite what it entails or what it’s about. It’s something I’ve got to go back and have a chat about.

Well I have been looking after my husband for some years. He has been ill and so it’s been quite a stressful period. And I have managed to keep going quite well but now I have some back problems and some other problems and I had kidney infections in the summer and went to the GP who gave me an antibiotic. I thought it was very clever of her to sort out that I’d had a kidney infection, because I’ve had no symptoms other than a high temperature and being quite ill over the weekend. And then a month later I had another kidney infection and was given another antibiotic and improved and got much better, and then my back problems got worse, so I asked for a referral letter. When I went for the referral letter, a copy of it – because I like to get copies of referral letters and tests – I asked for copies of my last blood tests as well. So when I looked at the Path Lab report, the copy of my blood test, I was amazed to see a comment saying, Please inform patient CKD Stage 3. So I thought chronic kidney disease Stage 3, that’s a bit extraordinary. So I thought I must see the GP straight away and see what is going on. And the blood tests were done in June and this was well into the autumn.

So I’ve had high blood pressure problems for a long time and then, when it was in about 2000, the doctor, the GP I was with then prescribed tablets, which is the ones that damaged the kidneys a bit, apparently, but I didn’t know at the time that it had damaged the kidneys until a couple of years ago one of the nurses at the practice said about the kidney damage and I said I didn’t realise. And she said, that’s partly why you have the blood tests twice a year.

Yeah, well, ever since I’ve been taking the blood pressure tablets, I go to the doctor, I go to the nurse twice a year for blood tests. And I didn’t actually know that there was anything wrong with my kidneys until a few years ago one of the nurses said, she said, Oh, the kidney impairment is not bad at all. And I said, What do you mean? And she said, Oh well. She said, Haven’t you been told? She said, You’ve got a, you know, your kidneys aren’t functioning a hundred per cent. But she said, They’re quite good. And I said, No, I didn’t know and I never thought I had any problems, so So because I mean, up until then, I didn’t even know that they were impaired. I thought I was just having the blood tests because I was taking tablets. But, apparently, they can cause a bit of damage but- now I’m fine.

So when you, do you remember back to when she mentioned that and talked about your kidney impairment isn’t that bad

Yeah.

what went through your mind and what questions did you ask?

I thought, well, they give you tablets to cure one thing and it gives you something else. But then I’ve got friends that have had chemo for cancer and that causes even worse problems, so it’s just, you know, your kidneys don’t work a hundred per cent, fine. But they’re still working, so it doesn’t bother me.

And for you [addressing Shelley], when you ask information from doctors at the hospital or at the GP’s surgery, do you actually tell them that you’ve got a nursing background?

Shelley: They know, actually, because I- I do I’ve got ., my diabetes, I’ve got certain, [pause 2 sec] I can’t think of the word now.

Bernard: Charcotic

Shelley: Yes, I’ve got trouble, I’ve got diabetic feet.

Yeah, yeah.

Shelley: And they use me, at the doctor’s surgery, for medical students.

Right.

Shelley: So I hear quite a lot of information there as well with the medical students asking the GP about my particular condition with my feet.

Yes.

Shelley: And quite a bit of information comes out.

Right.

Shelley: And that’s when I first learnt I had kidney damage. Because the GP was talking to the medical students.

Oh right, so you kind of overheard him giving

Shelley: I did, yes, and I was quite horrified. Because I didn’t realise that I did have kidney damage but I’m not so advanced as my husband.

And what was it like for you finding out in that way of the GP telling another student. Can you tell me a little bit more about how that interaction went?

Shelley: Well, I was a bit shocked to hear it. But then I know that it is a complication of diabetes. I mean the eyes and the feet and the kidneys.

And I’ve got the eye problems and the feet problems so invariably, I knew I would get kidney problems. So I was a little bit shocked but not surprised.

And did you have any questions at the time?

Shelley: Well, I wasn’t in a position. I was [laughs] I was the model. I was the guinea pig so I overheard what was said, naturally, but I didn’t question it, which I suppose I should have done, at the end of the session.

Did you go back and ask questions at a later time?

Shelley: No, as I said, I asked my consultant at the next diabetic clinic, because I’m seeing I’m seen six monthly at the hospital. And six monthly at the doctor’s surgery. Because I’m on insulin I suppose.