Kath

Age at interview: 72

Brief Outline: Kath found out that she had kidney damage in 2006 when in hospital for a hip replacement. She was told that this had been caused by the anti-inflammatories she had been taking for her osteoarthritis and that she would need to find alternative medication.

Background: Kath is a retired piano teacher. In her 40s she developed severe osteoarthritis, which continues to cause her a lot of pain. She is divorced, has 3 adult children and lives by herself in a retirement flat. Ethnic background: White British.

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Kath has been living with severe osteoarthritis for many years. She was prescribed anti-inflammatories to help manage the pain and retain some mobility, but has also needed several operations and as the consequence of her joint pain gradually had to step down her work as a self-employed piano teacher. In 2006, when in hospital for a hip replacement, she woke up from the operation to find she had been given a urinary catheter. She then was told that her kidneys had been damaged by the anti-inflammatories and that she would have to stop taking them to avoid causing further damage. Her GP reassured her at the time that the kidney damage was not very bad yet and as long as she kept off the medication it should not cause her any further problems. Finding effective alternative pain control for her arthritis was difficult though - Kath now uses morphine patches which she wears all the time, and tops these up with paracetamol as required. Kath also takes water tablets to help with her blood pressure, simvastatin to lower her cholesterol, omeprazole for her hiatus hernia, nortriptyline to help her relax and sleep at night and calcium tablets for suspected osteoporosis. More recently, she developed gout in her right hand and was prescribed allopurinol for this.

To Kath, managing her osteoarthritis is by far her biggest health concern and the main reason why she comes into contact with health professionals. Despite several further operations, including two hip replacements and surgery to her knee and shoulder, she has found her mobility declining over the years. She is, however, still able to drive a car, and manages to get out and about using a mobility scooter. She meets up regularly with friends and is singing in a choir. She goes for hydrotherapy once a week and enjoys the soothing effect of being in warm water. She finds it difficult to do the recommended exercises at home though, partly, because she is unsure about how much pain she is supposed to withstand while doing them. Her other coping strategies include having day time naps, choosing food that is easy to prepare and putting on hold any household chores or activities when they get too painful.

Two years ago, Kath moved into a retirement flat and also changed her GP practice. Her new GP told her that kidney damage is classified as Chronic Kidney Disease Stage 3. She felt reassured when he explained that while her current values are lower than those of patients with completely healthy kidneys, they would have to decrease a lot more before she would require dialysis. However, she is unsure what exactly the values stand for. Kath says she has not had check-up appointments as such but that typically the doctor or nurse might decide to do a blood or a urine test to check her kidneys when she has come in to consult for something else.

She thinks having her kidneys checked once a year is probably sufficient as long as her values remain stable, but she would like these checks to be regular rather than opportunistic. She usually gets feedback on test results by ringing up the surgery and being told that “everything is fine”. She has at times forgotten to ask about the results but would trust the surgery to contact her if there was a problem.

Kath has not received any dietary or lifestyle advice from her GP specifically for her kidneys, though she was given a leaflet about high blood pressure. On occasion, Kath has used the internet to find out health-related information, though this has been with regard to finding out more about arthritis and gout.

Given her other health issues, Kath rates her kidney impairment as fairly unimportant, though taking part in the interview made her wonder whether there is anything to do to keep them healthy apart from avoiding the anti-inflammatories. She thinks health professionals should warn patients who are prescribed anti-inflammatories about the risk of kidney damage.

Kath found out that her kidney function had been damaged by the diclofenac she had been prescribed for her rheumatoid arthritis when she was in hospital for a hip replacement.

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, we’re 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.
 

Kath says her kidney function has not been checked regularly but tests were done when she moved to her current practice and since then on the rare occasions that she goes to the surgery with a problem.

I wouldn’t say I’ve had regular checks. I’ve if I was going to the surgery for any particular reason, they would sometimes say, “I think we’d better take a blood sample, test, make sure your kidney’s are functioning okay.” And, as soon as I moved here, that’s the very first thing they did was to take some blood to test for my kidneys and I think they’ve done it twice since or something like that.

So yes, every so often, they sort of get a bit excited about my kidneys and decide they’re going to check it but they don’t do it on a regular basis.

And can you tell me, in a bit more detail, what that looks like that, so they, you might consult about something else and then they might say, “Let’s look at your kidneys. Let’s have a blood test?”

Well, that would, back at my old surgery, here, I don’t, I very rarely go to the doctor. And it’s usually because I’m in an excessive amount of pain or I’ve got- I don’t know, whether I might feel ill from flu or something, so I don’t, I very rarely go to the doctor and it’s nearly always to do with my arthritis. I mean last time I went was because of this terrible flare up I had in my left shoulder. [touches her shoulder and makes contact with microphone] Oh sorry I forgot about the microphone!

Not to worry.

Yeah, because of the flare up I had in my shoulder.

And they tested my urine that time to make sure my kidneys were okay but that was the last time I went to the doctor. I don’t go to the doctor very often.
 

Kath was told that as long as she kept off the drug that had caused her kidney impairment she should be able to live with it. She felt reassured that she could put this to one side and concentrate on other health problems.

Did you ask any questions about the kidney damage?

I asked about my GP about it and he said that I wasn’t to worry. It wasn’t very bad yet and as long as I kept off the medication, they didn’t see why I shouldn’t be able to just live with it.

When I moved down here I did sort of go into it a bit more and I was told that I’d got third stage kidney disease. And they gave me some figures, which I’ve since forgotten. I think it was something like sixty was normal and mine was forty something and if it got to thirty then they would do regular blood tests every month but it would it would have to get down to about ten before I needed kidney dialysis. So basically, it was not- not a lot to worry about.

And what did you make of that information? Did you find that reassuring?

Yes, I did. Yes as I think, well, that’s okay. I can put kidneys to one side for the time being and just concentrate on the arthritis, which is the main, my main concern health wise.
 

A GP told Kath her kidney performance was around 40 and it would have to drop to 30 before they would test her more regularly, and to 10 before dialysis became necessary, but Kath didn’t understand the numbers.

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.
 

Kath lived with a bad cough for two months after starting on blood pressure medicine; her GP suspected it was a side effect so moved her onto a different medicine.

Because I had, when I’m on blood pressure pills, which have kept my blood pressure quite normal for quite a long time, but the first time I went on them, I developed the most dreadful cough… and, after I’d had the cough for two months, I went to the doctor and he listened to my chest and everything and said it was fine. And he said, “If you’re still coughing in a fortnight, come back and see me again.” So I did that and he was just filling in the form sending me to an ear, nose and throat specialist and he said, “Hang on a minute, when did I put you on the blood pressure pills?” And so I told him and he said, “It could be a side effect of the blood pressure pills.”

So he changed those and, since then, because if, I, it had never occurred to me that coughing could be a side effect of blood pressure pills, I do tend, if I’m put on new medication, to look at what the side effects are but otherwise, I’m afraid I don’t tend to read it.