A-Z

Justine

Age at interview: 44
Brief Outline: Justine was diagnosed with IgA nephropathy (inflammation of the kidneys) while having an eye condition investigated in 2011. After being monitored at the renal unit for 2 year she now has 4-monthly checks at the GP surgery and her kidney function has remained stable. She also has a heart murmur and takes blood pressure medication.
Background: Justine works as a self-employed lorry driver for a recycling company, so her job involves a lot of walking and heavy lifting. She is married, no children. Ethnic background: White British.

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Justine had her kidney problem diagnosed in the course of investigating an eye inflammation which kept recurring despite being treated with steroid eye drops. After the third episode she had blood tests and x-rays done at the local eye hospital, which showed that she had blood in her urine. She was referred to the renal clinic for further investigations and was worried that there might be something seriously wrong. She had a biopsy taken from her kidney via a long needle guided by ultrasound, after which she had to lie still for six hours to avoid a bleed at the biopsy site. She felt bruised and stiff afterwards and was advised to avoid heavy lifting, so she took two weeks off work to recover. Two weeks later she returned to hospital for the results and was told she had IgA nephropathy – an inflammation of the kidneys. She was put on medication to lower her blood pressure and had blood and urine tests every six months at the renal clinic for the next 2 years. She has since been transferred to the care of her GP and has a check-up every four months.

Meanwhile Justine’s eye inflammation has not gone away and she attends the eye hospital every two months for a check-up, for which she has to take a day off work because they put drops in her eye which dilate the pupil and the effects lasts several hours during which time she is not allowed to drive. She still takes steroid eye drops and, as they cause the pressure in her eye to increase, she also has to take another drop to counteract that. She takes one drop of each per day as part of her getting up in the morning routine, when she also takes her blood pressure medication. She recently tried stopping the eye drops but the inflammation returned. She has also developed a cataract as a side effect of the steroid eye drops. She has been offered another medication for this but it, too, has unwanted side effects so she prefers to leave it alone for now and have the lens replaced if her vision should get worse.

A few months ago Justine started feeling dizzy and nauseous after starting on a new medication to lower her blood pressure (nifedipine, brand name Coracten). The GP changed her blood pressure medication and sent her for a heart scan that showed that she has a heart murmur (aortic incompetence). She will have a repeat scan every two years to check whether that is worsening. She feels fine but has been told to see her GP if she develops breathlessness.

Although at first Justine was disappointed at having to take medication at her age, she has since accepted it because she feels well and it hasn’t stopped her doing anything. Of her various health problems the eye condition currently has the most impact on her life, although on reflection she thinks that in some ways her heart and kidney problems might be more important. She has not been given any specific lifestyle advice by her doctors but is keen to look after her health. After her kidney condition was diagnosed she looked for information about it on the internet to find out whether there was anything she could do to help herself. This enabled her to better understand the link between kidney function and blood pressure, and as a result she became determined to keep it under control. She hopes that the amount of physical activity she does at work will postpone any worsening of her heart murmur. With her GP’s blessing she also plans to resume her running hobby, which she stopped after learning about her heart murmur. She tries to eat more healthily than in the past and has increased her consumption of vegetables which has also helped her to lose weight.

Justine monitors her blood pressure at home every week but the new blood pressure tablets (losartan and ramipril) have made it fluctuate so she has been told to monitor it more frequently over the next four weeks before returning for a consultation. She is also having frequent blood tests of her kidney function because of the change in her medication. She doesn’t like that the onus is now on her to remember to arrange her check-ups at the right frequency, whereas when under the care of the hospital, she was sent appointment letters. She prefers to see the same GP each time but this can sometimes be difficult because she can only go after her working day is finished. She also prefers to find out the test results each time by phone or in person with the GP rather than trusting that no news is good news. She would prefer it if they contacted her as a routine about the results rather than her having to ask for them. She feels reassured that her kidney function is being monitored and is not overly worried about it as it has remained stable at about 59 percent since her diagnosis and the doctors who diagnosed her did not seem particularly concerned about it. She is frequently told her test results are ‘normal’, but she doesn’t understand how this can be, given that she only has about 60 percent of normal kidney function.
 

Justine describes what it was like having kidney biopsies taken.

Justine describes what it was like having kidney biopsies taken.

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And they eventually said, "Right," - four o'clock – "right we can do it." …So I walked down to this room with the doctor and a nurse and… I laid face down on a bed, …I put a gown on- I had my jeans on but I still had a gown on because obviously they just needed to get to my lower back.

And they have a scanner there so she scanned – it's like an ultrasound scanner – and you can see the kidneys on the screen and all the- whatever it is you look at, they look at. And she said I could watch it if I wanted. I said, "No [exhales] you're alright." And she explained what she was going to do. And then she gave me the first injection which obviously you felt the needle go in, and then after that I didn’t feel anything at all after that. Then she put about three injections in to numb it up right down through to the kidneys. And then she said, "Oh," she said, "you'll hear a clicking sound when I take…" and she showed, told me that then… showed me the signs… showed me the signs? That doesn’t make sense. She clicked the needle or whatever it is to take the biopsy and so I'd hear- know what it sounded like. I said, "OK fine."

Anyway so she put the needle in and I didn’t feel a thing. She said, "But I when I take… go to take it," she said… because where I'm breathing the kidneys are going up and down. And she said, "I want you to hold your breath to hold the kidneys steady," she'll click it, take the biopsy and then I can breathe again [laughs]. I said, "OK fine." So as I… so she said, "Right take a breath," so I took a breath. And she went like that [makes clicking sound] and I actually… felt it? I felt it, does that make sense?

Yeah

Whether it was psychologically felt or felt I don’t know.

You felt like a tugging?

Yeah a little tug. …Wasn’t painful, it was just like yeah, like a tug I suppose that’s the right word for it. And she turned round, she said, "Ooh," she said, "I've got a bit of the muscle as well as the kidney," she said, "I will do it again." I said, "OK no worries." So she took it again. So she said, "Oh that’s better," she said, "I'll take one more for luck." [laughs] I went, "OK [laughs] ha ha ha thanks!" So she took another sample, so I ended up with three little samples. I said, "OK fine," I said, "I'd rather you get it now than having to come back and do it all again." [laughs] …So that’s fine and… so she said, "Right," and then she obviously took the needle out and cleaned up and she put a little… just like a little Melolin plaster thing over it. And she said, "Right," she said, "It's alright," she said, "I want you to turn over." So she said, "But I don’t want you to do anything," she said, "I will…" the nurse and doctor, she said, "I will move you, I don’t want you to move yourself," and of course I tried to move myself aren't I? as you do [coughs]. Excuse me. And so they moved… turned me on with my back and she said, "Right," she said, "we're going to take you up to the ward." I said, "OK fine." So they then took me in the lift up to the wards to the bed and they then had to put me from the trolley onto the bed. and they got one of those boards that pull you across that you have to lie on?

Hm mm

And she said, "Right," and there was about three or four of the nurses around me at this point. She said, "Right," she said, "I don’t want you to do anything," she said, "just let us do all the work, just lie there," because you're not allowed to move… because it could… by moving because where they’ve taken it out, the kidney needs time to repair itself and the clot because otherwise it could bleed.

Mm

And so they literally dragged me across onto the bed… and I just had to lie there flat and that was it and she said… and I said, "Can I have a drink and that?" So she'd get me some water and things. And that was it! I was just literally laid there, I couldn’t… I was staring at the ceiling, trying to look around [laughs] and trying to see what else was going on in the ward because I think there was about three or four other people in the ward as well, and then just listening to what was going on around me really [laughs].
 
 

Justine finds it a nuisance having to remember her check-up is due and then arrange the appointment; she would prefer a system where the practice contacted her.

Justine finds it a nuisance having to remember her check-up is due and then arrange the appointment; she would prefer a system where the practice contacted her.

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What are the downsides of having the check-up

It's just a pain trying to ring up, make the appointment, go… take my time out to go and do it between all the other things you just in life you do. It's just taking that time to do it and making that phone call, initially to do it – that is the downside of it. Therefore that’s why I think if they… if the system had a way of… saying to you, 'You need an appointment,' and they ring you or they text you to say “you’ve got a kidney test due”, at least then I could speak to somebody or… I’ll make an appointment rather than trying a) remember that I've got to try and make the damn appointment and take my time out the day to do that.

Amongst everything else you’ve got to remember to do.

So that was my next question about…

[Laughs.]

What would be the ideal monitoring service for you?

Oh yeah [coughs] even if it was just a text just to say you're due for a kidney function test in two weeks, please call to arrange an appointment. At least then the system's done something to remind you. And to remind me rather than trying- because I'm sure there are people out there that forget these things.

Yeah

Unless you’ve got a good memory [laughs].
 
 

Justine is in favour of health checks in general and would like it if the NHS monitored people for more things than they do at present.

Justine is in favour of health checks in general and would like it if the NHS monitored people for more things than they do at present.

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So what are your views on having regular kidney checks for people like yourself, do you think it's a good thing or a bad thing and why?

Well, it can't do any harm by having regular check-ups. I'm… quite… in fact I'd like the system as a whole to be more… regular check-ups, not just for kidneys but for other… things that could… not necessarily little things but more sort of some of the major things like possibly for like cancers and diabetes and all those sorts of things; possible strokes, things like that. And I think we should have more regular check-ups for all those things to diagnose things earlier in life.

Because it's always, I don’t know about you, but… it's always in the back of my mind somewhere that in my family I know of people who've had heart attacks; I've known people who have had cancers in my family and you think, 'Am I going to get it?'

Just because they’ve got it am I going to get it? And it brings it to life when you know people who have these things and die of these conditions. …And you think, 'Well is there… there must be a way that you can have check-ups to try and detect these things earlier rather than later in life.' Try and, you know, so there's a better chance of survival.

Yeah

For these things.

So for the NHS as a whole to become more oriented towards preventive medicine?

Yeah possibly, yeah.
 
 

Justine would like a more detailed explanation of why her kidney function is described as ‘normal’ when it is 60% rather than 100%.

Justine would like a more detailed explanation of why her kidney function is described as ‘normal’ when it is 60% rather than 100%.

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Is there anything relating to kidney checks or kidney disease that you feel you don’t know currently as much about as you would like to?

It's very… thinking about it now from what we've said, it's probably a bit more on the function levels, to be honest. Whilst I'm saying yes, they say to me, "It's at sixty percent," which to me sounds bad but they're saying, "Oh no, it's normal" …But how can it be normal if it's only at sixty percent and not a hundred percent?

Maybe understanding that a little bit better.
 
 

Justine is aware that if she has lots on her mind her blood pressure rises; as a result she has tried to adopt a more relaxed approach to life and allow more time to get things done.

Justine is aware that if she has lots on her mind her blood pressure rises; as a result she has tried to adopt a more relaxed approach to life and allow more time to get things done.

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And do you have a sense of what your blood pressure is doing? Is there any way you can tell whether it's high or low?

I suppose- the only way I can sort of tell myself… I suppose if I'm just sat on an evening watching tele and then chilling out for an hour before you go to bed, then I know my blood pressure's going to be lower. If I've got a lot of things on my mind , I don’t mean as in like worrying stuff, I mean as in, right I've got to go and do this and I've got to go and pick up this, or buy that.

Just being busy?

Yeah just general things and “oh I've got to finish this report for my other activities that I do on my computer” and things like this. Then I know in myself that that’s getting my blood pressure up. … I don’t feel stressed or anything like that but I just know that that’s- and it's made me more conscious now of the things I do that it’s affecting my blood pressure so it could be affecting my kidneys.

So what kinds of changes have you made since you were told that you need to bring your blood pressure down?

I've…I’ve- think well, a) life's too short to worry about sort of too much things anyway so I… I've now said, "Well if I can't do things, I can't do them." It's not the end of the world just because I haven’t posted this letter today or I can wait till tomorrow or… I haven’t sort of … because I do… a lot of computer work for a youth organisation I run, and I've got deadlines for certain things and I'm thinking, 'At the end of the day it's not my job; it's not a hobby… it's a hobby sorry, it's not a paid job so if I don’t get it done, I don’t get it done any more,' you know? It's like I still- but I allow myself more time to get it done rather than try and rush it and leave it to the last minute.

You’ve adopted a slightly more relaxed pace?

Yes, sort of- yeah I think so yeah, definitely.
 
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