Elizabeth

Age at interview: 74

Brief Outline: Elizabeth learned recently that her kidney function has been monitored for 6 years and is impaired. Although told it isn’t life threatening she worries that she might need dialysis in future. She has multiple health problems and feels weak and tired.

Background: Elizabeth is a retired mushroom picker. She is widowed with three adult daughters. Ethnicity: White British.

More about me...

Six weeks ago Elizabeth’s GP told her that her kidney function has been being monitored for the last six years and that they aren’t functioning as well as they used to. Although the GP explained that she should not worry about her kidney problem because it isn’t life threatening, Elizabeth was shocked by the news and does worry that she may need dialysis in future because she has known people in that situation, or that her kidneys may fail altogether. She says she was glad that she hadn’t found out earlier, and would prefer not to know about it now either. She doesn’t understand why her kidney function should have reduced and wonders whether it might be a result of taking thyroxine for an underactive thyroid gland for the past six years. She would also like to know if there is anything she could do to improve her kidney function. She also worries about her 38-year-old daughter whose kidney function has recently been found to be impaired. She talks about her worries to her sister-in-law and receives practical support from her daughters and neighbours.

Elizabeth has experienced a variety of health problems and feels she has deteriorated in the last year; she feels weak, tired and lethargic but hadn’t attributed any of her problems to her kidneys. In addition to her under active thyroid, she has chronic obstructive pulmonary disease, acid indigestion, osteoporosis, low blood pressure, vitamin D deficiency, and a cataract in one eye. She has a history of gall stones and has had her gall bladder removed and also two benign skin lesions from her head. She has smoked since age 14 and is trying to cut down to about 10 a day but is not motivated to quit entirely. Since her husband died seven years ago she hasn’t bothered cooking just for herself. She can no longer digest pastry or onions and pickles because of gastric pain but hopes that medication will help. She has not been offered any dietary advice by her doctor.

Elizabeth has been enrolled onto the BARACK-D trial for people with kidney impairment, which involves taking either an active drug or a placebo and monitoring changes in her health, particularly blood pressure. She has had two blood tests so far and is due for a third in about a month’s time but has not yet started on the medication. She has not been told the results of the blood tests or what they mean.

Elizabeth learned recently when entering into a research study about kidney impairment that her kidney function has been monitored for the past 6 years but she hadn’t been told.

How many tests have you had that you know of where she's looked at your kidney function?

Recently? Two, yeah two. And I'm going to have another one on the eighteenth of…apparently with this survey I have to have them every so often. I had to have two in six…two in, like, just over a week, like, Monday and Monday, and then I had to go a fortnight, nearly three weeks before she did another one, but I don’t know the result of that because I haven’t seen her since.

Right

And she said the lady - because she's on holiday - that the lady that will see me, the nurse, she will take a blood test. Further than that I don’t know.

So these are the ones that have been taken as part of this trial that you’ve started on?

Trial mm

But you think she's been measuring your kidney function for a while?

Well she said, yes, she'd been keeping an eye on me for six years but she had never said anything… well I haven’t been under her, I've had any doctor that I, you know, has been available, but she has taken me on now that I only ever see her, so… mm.
 

Elizabeth didn’t find it reassuring to be told that plenty of people can live with one kidney, because she wanted an explanation of why her kidneys were not working as well as they should.

So before this happened to you did you know that people could have these kinds of problems with their kidneys?

Well I've heard of it, yeah. Cos the lady round the corner, she had kidney failure, she was about my age and she used to have to go up the hospital three days a week, yeah. Because if my kidneys go that’s it, isn’t it, I mean…it's the end of you really, isn’t it, if your kidneys fail.

Did the doctor have any reassuring words for you?

No. Well she just said to me what I said to you. She said, "Hundreds of people live on one kidney, you can live your life on one kidney and it shouldn’t affect you", so that’s all she's told me.

Mm is that not reassuring?

Not really. Not really. I want to know why they're failing, that’s what I want to know. I mean I'm not a drinker, I don’t drink, so whether it is the medication or whether old age.

Well she hasn’t explained, she just, as I say, she has just said that my kidneys aren’t working as they should and I'm almost living on one kidney, but I wasn’t to worry because hundreds of people live on one kidney. But then it starts alarm bells ringing doesn’t it? Why are your kidneys failing; what have I done to make them fail? Is it my lifestyle, is it tablets? I mean it can't be drink because I don’t drink; is it coffee? You don’t know, do you?

But you do all that worrying despite the fact that she said not to worry?

Mm, you still worry of course you do, course you do.

Elizabeth didn’t feel reassured after seeing her GP and she would like more information about why her kidneys have been affected. She wonders if the medication she took for her thyroid could have been a cause.

Well I only found out about six weeks ago that my kidneys weren’t functioning properly. I take a tablet for my thyroid and they have kept a check on me but only about twice a year, until recently, now I'm having blood tests every other week, so I really don’t understand. I don’t feel well, I've got no energy, but I didn’t associate it with kidney. But apparently they’ve been keeping an eye on me for six years since I had my gallbladder out, so I don’t know. I don’t really understand how it can affect me if my kidneys aren’t working properly. How does it make you feel? I don’t know. I feel washed out all the time really, so is that anything to do with it? I don’t know.

I don’t know. You'd have to ask your doctor.

Mm

So what went through your mind when you were told about this problem with your kidneys?

Well I could just see dialysis on the way, and that’s terrifying.

Did they ever mention that word?

No, no, no it was just me. Oh kidney failure, other people go on dialysis don’t they?

Did she use the word ‘kidney failure’?

No, no she just said that my kidneys weren’t working as they should.

So you’ve jumped to the conclusion?

I've jumped to the conclusion that they're giving out, because I know a couple of people whose kidneys have given out and they go up to the hospital and have dialysis three days a week. But what has made my kidneys fail? That’s what I want to know what… other than the medication, have I done something that has made them fail?

Have you not asked the doctor that question?

No

Maybe you should?

Mm but…

Maybe she can give you some reassurance if you ask her.

Mm. Well all I can think of it must be the medication - been on it for six years, so I wonder.

Which medication do you mean, the thyroid one?

Yeah

I don’t know.

She did say it does affect the kidneys, and of course steroids affect your bones and everything else don’t they? That’s what I say, they give you one thing to cure one thing and it upsets another. But other than that I don’t know. As I say, it's all new to me this last few weeks, I hadn’t a clue.

Since Elizabeth has been widowed she hasn’t bothered to cook elaborate meals for herself but has a roast dinner at her daughter’s house on Sundays.

I suppose diet's got a lot to do with it, because I don’t eat like I used to, because there's no point in cooking like I used to. I mean I've had a family and cooked, and I just eat what I like now, which half the time it isn’t, I suppose it isn’t a good diet, but I have a bit of everything – you know cheese, milk – because they want to know how much milk I drink. Well I don’t literally drink milk but I have it in coffee. Only have weak milky coffee, so average half a pint a day, and cheese a couple of days a week. But other than that I mean it could all be down to diet I'm sure. I've never been a fruit eater but I have tried to start eating a bit more fruit. But you know, when you’ve got a family you cook, don’t you, and then… I mean my husband was a big eater, as ill as he was, he still loved his food.

So what sort of things do you have for your meals these days? You were saying you don’t bother cooking like you used to.

I prefer fish to meat. I do eat quite a bit of fish. I don’t know, I mean jacket potatoes and cold meats and pickles and things like that I like. I go up to my daughters every week and have a roast dinner on a Sunday, so [coughs] at least I get vegetables there.

But, and I cook for my little granddaughter two or three days a week but she only wants chicken dippers and chips and things…

Elizabeth is trying to cut down from 20 cigarettes a day to 10. She feels that health professionals have little patience or sympathy with smokers.

You mentioned that you still smoke. Have you…how much do you smoke?

Well I'm trying to cut it down to about ten a day. Some days I'm good and another day I'm bad, it all depends how I feel really.

How much do you smoke on a bad day?

Twenty. Yeah well that’s… in twenty four hours, I mean, because if I'm up in the night you see that’s the trouble but…

You'll have one in the night if you're awake?

Yeah I get up and have a cup of… I did it at half past three this morning – have a cup of coffee and a biscuit and a cigarette, and then I read for a while and then I go back. I went back at five o'clock. I've been like that since my husband died.

Not every night [coughs] but most nights.

Mm. How long's that then?

Seven years, be eight… yeah, seven years in February.

So what have you done to try and give up your smoking?

I've got inhalator. I had patches last time – they did help – but I'm not mind-set to give it up that’s the trouble.

I'm not determined to give it up and that is the worst thing, isn’t it?

Yeah, yeah. And see my husband he had to give up drinking and smoking overnight. He had cirrhosis of the liver and a lung thing and heart trouble, and he gave up smoking and drinking overnight. But the doctor told me at the hospital not to give up straight away like that – gradually cut it down. So, mm, that is my sin, is smoking and I don’t think anybody has any patience with you when you smoke, they seem to have more patience with people that drink, don’t they? Drink and drugs they seem to have patience with, they don’t seem to have patience with people who smoke, you know.

What makes you say that? How do you get treated by the health professionals when you say you smoke?

Well it's your own fault really isn’t it? You brought it on yourself.

Is that what they say to you?

They don’t but that’s what, you know what they mean. They don’t literally say it but you know what they mean. I know a lot of people who drink a lot and get help, and they seem to sympathise with them like it's an illness, but I suppose smoking is a drug isn’t it? I've been on it for all these years.