Jackie

Age at interview: 59

Brief Outline: Jackie had repeated kidney infections in childhood which went untreated causing long-term damage to her kidneys. Her blood pressure has also been high since childhood. She takes medicines to control her blood pressure and cholesterol and has a check-up with her GP every six months.

Background: Jackie is married with three adult children. She works in NHS service improvement. Ethnic background: White British.

More about me...

Jackie had repeated kidney infections in childhood that had not been recognised at the time and were therefore not treated, which caused long term damage. She was diagnosed with kidney disease aged 6 and high blood pressure aged 10, had several hospitalisations in childhood and has taken medication ever since. At one time Jackie thought she might not be able to have children but in fact she went on to have three. She wonders whether she was born with some underlying kidney problem that made her susceptible to infections because one of her sons needed to have a kidney removed in adulthood. Nowadays the problem is under control and Jackie is well, although prone to urinary tract infections. Her chronic condition has not affected her life and she tends not to think about it or discuss it with friends and family.

When Jackie was younger she had regular check-ups with a hospital specialist but her care was later transferred to primary care. Nowadays has a check-up every six months with her GP, when her blood pressure is measured and blood and urine samples are taken to test her kidney function. She always phones the surgery to obtain the results, preferring not to assume that no news is good news as she feels reassured to know that her condition is stable. Jackie has recently changed doctor and her current GP has done an ultrasound scan to look at the kidneys, which showed some cysts but nothing to worry about. The GP has also explained more to Jackie about kidney function and how it is monitored than she ever understood before, which has made her realise the importance of keeping her kidneys as healthy as possible from now on. To do that Jackie monitors her weight and adjusts her diet accordingly, she keeps active by walking and cycling, and she eats a diet low in salt and fatty foods. As well as blood pressure medication Jackie also takes a statin to control her cholesterol. As she ages Jackie becomes increasingly aware that her kidney function might decline further and cause problems.

Jackie wonders whether an untreated kidney infection was the trigger for her decline in function or whether there was an underlying familial problem that caused her to have recurrent infections in the first place.

So what do you think caused the kidney problem in the first place?

Well, that was never really established. There was two schools of thought, one was that I may have been born with some problem that made me prone to get the infections. The other, the sort of school of thought is that I, my kidneys were fine, I got an infection that wasn’t treated, and that caused the problem. I know my kidneys were damaged with the infection. I may have been born with perfectly healthy kidneys and ureters and all the rest of it but I’ve never actually found out what it was, and I don’t know whether it was known at the time, I mean whether, I think it would be different today because often they can pick up things a lot sooner with ultrasound scans and things like that.

More recently, I have wondered if I did have a problem, because one of my sons has subsequently had to have a kidney removed because he had a problem with the junction, the valve in his ureter. He was getting back flow, as an adult this this was, so part of me wonders whether I did have something and it was passed onto him and didn’t manifest itself until later years in him. But as I say… I don’t know.
 

Jackie has had different types of imaging of her kidneys since childhood plus urine flow tests. She describes what it was like to have an intravenous pyelogram.

The other thing that happened recently was I did have an ultrasound scan of my kidneys , and that again was the GP that I’m currently seeing wanted to just get a baseline of where things were at because I hadn’t had any sort of investigations for a long time. Used to be IVPs where they put the dye in and… But anyway I just had an ultrasound scan, which was more pleasant than having IVP [laughs].

What’s an IVP?

That’s an intravenous pyleogram, where you have dye put in and they monitor it going through your kidneys.

So you’ve had those before?

[mm]

Have you had them often?

I had, I had several when I was a child, once, then I had, I had them more regularly when I was younger and then I think prior to becoming pregnant the first time, and again that was about getting baseline information to see how my kidneys might function during pregnancy. And I also had a, I don’t know what’s that called, a sort of where they monitor, where your bladder is full and you, you know, it sees how your kidneys function and release the your urine but I can’t remember what that was called. When I had the, but then I think I had, in my adult life, I think I might have had one or two, not very often, no.

So what’s unpleasant about having the IVP?

Oh it’s just that you feel the dye going round your body.

Okay.

You know, it goes, it goes in from your arm and you actually feel it going up right through every everything, and so you get a hot feeling going through your, through your body and they put, I don’t know whether they still do this, but they used to put tennis balls on your stomach and tighten a belt really tight across, and it was something to do with restricting, I don’t know what it was, but it was restricting the dye or keeping the dye in your bladder or… I don’t know, I can’t I can’t remember.
 

Jackie learned her eGFR when she saw a letter written by her kidney specialist; before then she had been told she had the function of one and a quarter kidneys. Recently her function has reduced from 49 to 40 ‘percent’.

So how did you know, in the past, if you weren’t given the numbers, you were just told everything was fine, how did you know what was happening to your kidney function, whether it was going up or down?

The only, it’s only been because of, in fact the first time I ever knew about the, it’s the G, is it the GNR?

GFR.

GFR. The first time I was really aware of that was when I moved house, not long after my husband and I got married, and that was to do with insurance, life insurance for the mortgage. And it was, for the first time it was weighted, they wanted to put this extra premium on, and that had never happened before. And I queried it, and that’s how I went back to the hospital. That was how I went back to the hospital, when I think about it. It was because, so I went to see my GP and said this this is what’s happening and the GP didn’t feel that he could respond to that and so wrote to the consultant I used to see prior to being transferred to primary care, and that’s when I went to see the consultant. And that’s when I was first prescribed the statin. And he sent a letter off to the insurance company and my GP, and I was copied into that letter. And that was the first time I was actually, aware, I had previously been told that I had about one and a quarter kidney function but that’s, I know that’s not a measurement, but that’s how it was described to me as someone who had one and a quarter kidney, although it’s both my kidneys that are damaged. That was the first time. And that’s how I know, how I knew it had gone down, and also I, well, yeah, how I knew it had gone down, when I moved more recently, from that that letter that actually stated what it was then.

So what was your latest reading? Do you remember?

I think it showed that I had about forty percent kidney function, which had gone down, I know when I’ve looked back, it had, it had gone down in recent years. It had been higher than that and it had been close, I think, to about forty nine percent.
 

Jackie has a new GP who has explained much more about her kidney impairment than any of her previous doctors; this has motivated her to do everything she can to keep healthy.

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.

Jackie couldn’t recall anyone ever advising her to reduce her salt intake because of her kidney problem, but she did it herself as part of efforts to maintain a healthy lifestyle.

I have a low salt intake. I try to have low fat food but I do occasionally splash out on things [laughs]. But overall I think I have a really healthy diet and it is all about sort of trying to maintain a sort of healthy lifestyle.

Is that something you’ve discussed with any of your doctors over the years or have you just done it all off your own bat?

Surprisingly I haven’t discussed it with the doctor. It’s, even, when I think back, even though it was well known about having a low salt diet if you have a kidney problem, it was never actually mentioned to me. It was just something I did myself because I was aware of it. But I don’t recall anyone ever saying to me, “You should have…”, you know, “Restrict your salt intake”, which is quite interesting, because, whether someone just assumed that someone had said this at some point [laughs], you know, which, you know, is I guess, you know, could have been the case and they thought, ‘Oh well, she’, you know, ‘Someone will have said this’, but actually nobody did.

So has any health professional given you any advice about diet ever?

No. I don’t think so. Recently, the GP at, I see, it, but it was a kind of general, you know, about taking care of yourself generally. I think it was a, it wasn’t an in depth. It was just a, you know, low salt, healthy weight, you know, but not specifically, no.
 

Jackie says she doesn’t actively worry about her kidney condition but is always aware of it and as she has grown older has begun to think more about its possible impact.

It’s, I kind of feel aware of it and I suppose I’ve reached the age now, it never used to, but then I think because my kidney function has gone down a little bit, it’s there. It’s kind of, I wouldn’t say I’m, like, really worrying over it but I’m aware of it. And, you know, it’s, I guess for the first time I’ve thought of any sort of impact of having this, you know, what it might mean, sort of thing but , so that’s that is a recent thing.