Tests used to monitor kidney health
Many different chemicals can be measured in the blood. The people we spoke to commonly had other medical conditions alongside their kidney impairment and therefore had regular blood samples taken to monitor other things, such as the level of their blood sugar, cholesterol, thyroid hormones, liver enzymes, a drug called lithium (used for treating mental health conditions), their blood clotting time (INR) if taking warfarin, or blood cell counts, in addition to their kidney performance. (See also ‘Check-ups in general practice and hospital’).
Blood samples were most commonly taken at people’s local health centre by a nurse or phlebotomist (a specially trained healthcare assistant not usually qualified in nursing). Others went to a phlebotomy clinic at their local hospital or elsewhere.
- Age at interview:
- Sarah is a retired physiotherapist and looks after her husband who has been seriously ill with cancer but is now in remission. Ethnic background: White English.
We go to the hospital here. If we have transport we can go straight to the Path Lab at the hospital.
It’s quite open. It’s very good. If you choose the right time of day and there are not clinics it is excellent either at two of the local hospitals we can just go to the Path Lab. Sometimes wait a long time. Go and have a cup of coffee. They are very, they’re very good. They will give you a number and they say, ‘Come back in an hour’. Or if you choose the right time you can have it done within 10, 15 minutes. Very good service around here for that. Otherwise for elderly people or people who haven’t got transport you can have an appointment with the phlebotomist at the GP Surgery but that can be one or two weeks late, you know, later on. So if you have transport it’s very good, the service.
- Age at interview:
- Tony is single and works as a volunteer driver for the Red Cross, having retired from his main occupation as a hotel duty manager. Ethnicity: White British.
It’s just in the clothes section.
In George in ASDA, yes. I mean you just go ups-, up the travelator into ASDA, the George section, you’re looking in the clothes, and, oh, it’s in the corner. That’s all it is, it’s…
And you have your blood test done there?
…and you’d, oh, yes. And a lot of people in [city], it saves going to the hospital or other, very quick.
Yes. Oh, aye, you go down there, blood pre-, coat, jacket off, sleeves rolled up. And there’s four, four people from the hospital in a morning and three in the afternoon. And they get through some, they get through some people.
So you don’t need a specific appointment, you just turn up?
No, you just turn up, no. The doctor gives you the thing, or the consultant at the hospital, and they give you the form and you go when it’s, when, when you’re free to go. You don’t have to make an appointment. I just go when I’m passing.
That sounds really good.
Oh, it is, it’s excellent.
And how long do you have to wait usually?
Well, Mondays is the worst day but, oh, about a quarter of an hour maximum.
Oh, yes, yes. They aren’t long once they get started, they’re away, yes.
Yes, and everybody knows the drill when you go in. There’s five si-, because we play mu-, say it’s musical chairs. You sit, you sit on the chairs and move down and then, “Next, next, next”, and so forth, you know, yes. So you aren’t there, you aren’t there long.
- Age at interview:
- Gordon is a retired Royal Mail Inspector. He retired at age 55 to care for his wife after she had a stroke. He is now widowed and lives together with one of his two daughters, who has Down’s Syndrome. His other daughter runs a hair salon in the front of his house. Ethnic background: White British.
So I've asked you about the kinds of tests you're having. What about the fasting blood tests – how do you find those?
I don’t like them at all! [laughs]. Because I- when I wake up I love a cup of tea straight away but… and…with having the diabetes I like to have my breakfast and my cup of tea first thing in the morning but… they say, "Oh I've got an appointment about eleven o'clock." I said, "Well that’s no good to me, I want early ones," and then she said, "Well…”oh dear, you are a problem; how about half past seven?" I said, "Fine." She says, "You're not about that time in the morning?" I said, "If you said five o'clock I could be here," you know? I want to get it done so I can get some… food into me. Yeah I'd rather have all these things early in the morning.”
- Age at interview:
- Joanne works part-time as a lecturer in further education. She has bipolar disorder and has been taking lithium for many years to help even out her moods. She lives with her husband, they have no children. Ethnic background: White British.
Right I'm now going to ask you a little bit more about the nitty gritty of testing. So you’ve already mentioned it's quite important because of the Lithium that you take it at a particular time. What do you feel about actually going and having the tests?
Doesn’t bother me, it's part of my life. I just every three or twelve weeks/three months, depending on whether we're on holiday or not, it's part of my life that I go and do – it's a routine I've got into and that when I first started taking Lithium I was told I needed to make sure that the levels and everything were OK and that they monitored by bodily functions. So as part of my life, and it doesn’t bother me, it's not intrusive, it's a quick- you know injection…it's a quick – needle in, phials out and that’s it.
Mm and you don’t have a particular problem with needles?
I've no problems with needles at all, no.
- Age at interview:
- Peter worked as a railway signaller until he had a massive heart attack in January 2013. He spent a month in a coma and doctors thought he was unlikely to survive. The near-death experience made him re-evaluate his life. He has three children and currently lives by himself after recently separating from his wife.
Can you tell me a little bit more about the routine tests or, you know, check-ups you were having at the time?
Don’t talk to me about those [laughs]. I never used to have a problem with people taking blood out of me because after the hospital they were taking it out left, right and centre, everywhere, all the time. But what used to get me was when they would take three or four attempts to get the needle into your vein.
And I became a bit paranoid about it. So I had to tell- every time I had a blood test I had to explain to the nurses and doctors like, "Oh do you mind… just taking a minute just to make sure you find a vein," because I was fed up with being pricked here, there and everywhere like to get- get the blood out. And if they did that they used to do it the first time and I was alright with that but as before as soon as they tried a second time or third time I would come over in a flush [stroking his forehead] – I'd start sweating in a hot flush – so it did affect me quite a lot.
Funny the last- when I went to [hospital name] when my daughter came with me, she said, "Oh well don’t tell them this time Dad, see if they’ll do it first time… without you telling them you’ve had problems in the past." I said, "Alright I'll try, I'll try it your way," but sure enough I went in, I didn’t say anything and sure enough first time, no, she couldn’t take it. So she had to get her… the nurse in charge to come and do it sort of thing. "There you are [daughter’s name]." [smiles] So that’s the way I deal with that… because I've had so many blood tests that I've become paranoid about needles going in me.
Where it's not a bad thing, it doesn’t hurt that much or anything like that, it's just when they do it more than once you feel like a pin-cushion.
So …what- so you’re trying to talk to the nurses beforehand?
Now I do, I do, yeah.
And have you found is it getting any better, is it getting worse?
Yeah if I tell them, if I tell them before they're very good, very understanding and they do spend a bit of time checking where the vein is properly.
And not just trying to find it with a needle sort of thing.
Does it make you more anxious for when you have a check-up appointment due; do you think about it beforehand?
Not… no because I know the routine now, I know- I tell them and I know it sounds stupid probably like a blithering idiot but… in my mind I tell them and they do it first time and I'm happy, they're happy and the whole world's happy, so…
It doesn’t sound stupid to me. You see me sitting here like this because I'm exactly like that.
Because in the hospital that was my only… because I was in a bad way, all my veins collapsed and everything.
That [points to the back of his hand] was the only vein left showing, and when they put the needle towards it, it actually moved, it moved out the way.
Yeah rolling veins, yeah.
I'd never heard of that before or seen it but it was like a foreign body inside me.
That’s how bad, how paranoid I got I suppose, it was the vein protecting itself.
- Age at interview:
- Tina is divorced with an adult daughter. She trained and worked in nursing until age 27 when she had to stop work after being diagnosed with Crohn’s disease and classed as disabled.
I forgot to ask you at the time, but, when you were talking about the blood tests and you said you’re not particularly keen having needles in your arm. Have you found any ways to make that more manageable for yourself?
Again, because I’ve had so many blood tests, and I was a big girl before it all began, it’s never been easy to take blood from me, but when I lost all that weight, my veins, they only used to have to get a needle out and they’d collapsed. And it’s another thing, you know, don’t try your conventional way, spend a couple of p and do it with the butterfly needles because they’re very little and they’ve got, they do the job.
You know, when they try with the big needles in your arm and all that kind of thing, it’s not only bloody painful but it’s not effective, you know, you end up with bruised arms, so yeah, I’d say, with people, I’m sure I’m not the only one, people with kidney problems, because of they’re always having their blood taken, they’ve got trouble with their veins. Use the butterflies, because I’m terrified of needles but if I think they’re going to use a butterfly I’m not so bad. I‘m, ‘Oh well, there you are then’, because you’ll probably hit the vein straight away.
I haven’t heard of butterfly needles before.
They’re little ones, they’re like a dear little needle with, like, a little pipe… that you stick the syringe into to draw the blood and they’ve got two, like, wing bits here.
But I don’t mind. If they’re going to use – because, like, when I was in hospital, it got so bad they were, like, taking it out of my feet.
And I thought, ‘Oh Christ almighty’, I know a lot of people have had problems like that.
Use the butterfly ones.
Is that something you ask now, when you go and see the nurse? Do you ask them to use the butterfly needles?
Yeah. I’ll actually say, “Look, you know my veins are pathetic. Can you use the butterfly ones?” Some you get, “Well, no we can’t”, because it’s down to cost. Others, “Oh right, okay then, Tina, yeah.” And straight away, they get the blood. Yeah, you.
So it’s worth asking.
Oh yes. So if you ever go along to the doctors and they’re poking and prodding you, say, “Could you use the butterfly needle please?” They, they’re good.
But they’re more expensive are they?
Yes. And I was actually told that when I was ill that time, the phlebotomist, who was in the hospital, and I got used to him taking my blood, he was brilliant because he used the butterfly straight off. And I didn’t realise this and he got my blood, and it got to the stage, where I wouldn’t let anybody else near me. I’d say, “You go and get that phlebotomist. He he’s all right.” And one day I didn’t intentionally, but I had a doctor say to me about having your bloods taken, and I went, “Well, use the butterfly then. The phlebotomist does.” She said, “Well, he’s not supposed to because they’re dear. They can be quite dear.” And I thought, ‘Well, I don’t give a damn about how much they are’, you know. I’m just the patient and I would rather that, rather you prodding me and not getting anywhere with a big needle, you just use the butterfly needle. But yeah, they’re pretty good now.
Blood tests to check kidney function should be accompanied by a urine test for protein leakage from the kidneys. Although most people we spoke to recalled having occasional urine tests, few said they had been done regularly or with every blood test. Most people did not know why they were asked to supply a urine sample, although some people with diabetes suggested it was to test their sugar levels.
- Age at interview:
- Margaret is a retired supermarket assistant. She has 3 children and 8 grandchildren. She lives by herself in a warden-supported flat but currently manages independently. Ethnic background: White British.
That’s fine. I mean they give you the little phial to take. So I’ve got, in the bathroom, I’ve got a bright pink beaker and so the night before, I always wash it out, put it on top of the cistern so that I remember as soon as I go in in the morning, because it’s a mid-stream sample they want and it works fine.
So you’ve got, so that’s like a bigger one to get it into the small one.
Yeah. Yeah because I mean the phials are very tiny. Really, yeah.
Where did you get that from?
What the phial.
Oh, it’s one I had for the grandchildren, when they were younger, and they didn’t like them because they were bright pink.
And the boys said, the boy, because and that, “I’m not drinking that. That’s a girl’s colour.” So fine, so they never got used [laughs]. I’ve got one, actually, in the cupboard at the back out in the kitchen, which has got turps in it and the other one is in the bathroom. I don’t know what happened to the other two.
Okay. No, I thought it was like a special device.
Oh, no, no, no. No, it’s just that it, you can’t, these phials are so tiny.
And so I’ve found it’s quite easy.
And I just put it on the top of the cistern. So that I think, must go. And I put a big note. I do, just for that, I put, “wee sample”, so that I don’t forget because first thing in the morning my head is a bit, you know, not… [blinks her eyes].
- Age at interview:
- Jill is a retired recruitment manager and previous lay member of a mental health review tribunal. She has atrial fibrillation and intermittent back pain from spinal stenosis. She is widowed, has 2 children and lives by herself. Ethnic background: White British.
And did you have a urine test as well?
Yes. Actually, they just asked me for another urine test because they want to see if there’s any protein. I queried the nurse as to why- because this came out of the blue as to why, it was last week, why had I got to have a urine test done, she said, “We want to see if there’s any…” She was a bit reluctant to tell me and she said, “We want to see if there’s any protein.” Well, protein means blood really doesn’t it? in my urine, so I don’t know why they’ve suddenly come up with this. In fact, I only had it done on Friday so I, it’s not good phoning up until probably next Friday to find out the results, which I will do because I’m interested to know why. They’ve suddenly decided I’ve got to have this test.
And you say you had a urine test before?
Yes, I have but I can’t really remember when, no, it was some time ago. I couldn’t tell you, actually, when that was.
And it wasn’t together with the blood tests that you had for the kidneys.
No. Well…it was, this this last one, I had my INR done. I’d cut my leg and I had to have that treated [laughs] and the blood test, it was all done at the same time.
So when, now with the urine test, that came as a bit of a surprise to you when the nurse called you up?
Yes, I was surprised. I nobody had mentioned to me that I’d got to have a urine test done. Whether it’s a routine thing because of the medication which it could be. I really don’t know.
But this has been the first one you’ve been asked.
And how did you find doing the urine test? Is that is that.
That’s no problem.
No, and, as, you should know, they wanted with your first time in the morning.
That was, actually, I was up at three o’clock in the morning so I did it then.
One of the underlying causes of kidney impairment or chronic kidney disease is high blood pressure. People with kidney problems will therefore also have regular checks of their blood pressure and if necessary will be prescribed blood pressure lowering drugs and advised to adopt a healthier lifestyle. Several people said their blood pressure measurement would often be higher when measured by a doctor or in a stressful situation than it would be when they felt relaxed; this is a well-known phenomenon known as ‘White Coat Hypertension’ and it can make interpretation of the readings difficult. Xanthe said she preferred to have her blood pressure measured by the practice nurse rather than the GP for this reason. If blood pressure measurements are high in the clinic people may be invited to use a blood pressure measuring kit at home to obtain potentially more accurate readings. Several people said they used a home blood pressure monitor and John said he recorded his readings using a free app on his mobile phone.
- Age at interview:
- Gerald is a retired Deputy Head of School and PE teacher. He lives with his wife of 57 years. They have 3 children and 10 grandchildren. Ethnic background: White British.
Apparently they discovered when they use the… I suppose which I call the old-fashioned method, when they wrap the sleeve around your arm. They do have occasionally have a difficulty in working out my blood pressure because they find it's very difficult to hear when I… my… I don’t know, pressure actually kicks in and if a stranger does it, quite often they get it wrong the first time and if the nurse who normally does it for me , if she's not there and a stranger does it, someone who hasn’t done it before, they say, "Oh," they might take it three times and it's, "Oh it's a bit high, it seems to be a bit high today”, “I think you'd better come back in a month's time and have it done again”, and usually when I go back after the month my GP takes it straight away and my- it's normal, you know, it's down and… but I have had that experience a few times. But I'm not, because, I say taken so often in the last nineteen years, doesn’t really worry me.
- Age at interview:
- Jim B is married with two adult children. He is a retired local government officer. Ethnic background: White British.
You can scarcely get in the door of, without them testing your blood pressure. And my blood pressure always went up [when I was tested at the GP surgery]. It was always very variable. And I was in any case, I had, I don’t know when I had had a monitor, a blood pressure monitor of my own, so I knew my blood pressure. I’ve got a book of my blood pressure going back years, way before I knew I had kidney disease. So I was doing that every day. But yes I do, I do find the taking of blood pressure in the GP surgery and also in the renal unit problematic because in the renal unit they take your blood pressure as soon as you, you know, they shout out your name, you walk in and your expectation is raised because, one, you don’t know if they’re coming out to shouting your name, so when they do. And then you go in and you’re immediately plonked down and they take your blood pressure. The blood pressure’s really high or in my case it is. And then when you go to the, into GP’s surgery it wasn’t quite the same. But you’re not really in the relaxed state you need to be in when your blood pressure’s taken. And when you’ve got a very variable blood pressure as I do anyway, I wonder how valuable a lot of the time that reading is.