Lesley

Age at interview: 58

Brief Outline: Lesley was diagnosed with chronic kidney disease after developing swollen legs, nausea and loss of appetite. She feels her GPs have been unwilling to discuss her condition and she has had to ask for periodic checks of her kidney function.

Background: Lesley is divorced with two adult children. She has retired early from managing a charity shop due to the combined effects of several chronic health conditions, including fibromylgia, arthritis and ankylosing spondylitis. Ethnicity: White British.

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Lesley has been living with fibromyalgia, osteoarthritis, and ankylosing spondylitis for some years, which together cause her considerable pain. A pain killing drug she used to take caused a problem with her kidneys. After developing swelling in her legs, nausea and loss of appetite, she had blood tests done and was diagnosed with chronic kidney disease (CKD) stage 3. She was told the diagnosis in a letter from her GP, was worried, so went back to see him to discuss it. She declined an offer of medication, saying she would like to find out more about the condition and how she could manage it herself. Some months later she wanted to discuss it again with the GP but the one who had diagnosed her had left the practice, so she consulted a different doctor, who seemed less willing to discuss her problems; they had a disagreement and she walked out. She later consulted a third GP at the same practice to ask for a repeat blood test to check her kidney function. She has since had her kidney function checked several times but each time she has had to ask for the test to be done herself.

She feels she has received very little help with her kidney problem from the GPs. They have given her very little information about the condition or how she could help herself to manage it. She looked for information about kidney disease on the internet and found that cutting out certain foods could relieve symptoms. She has noticed a definite improvement in her symptoms since changing her diet. Although doctors say that people don’t usually have symptoms of kidney disease when it is in stage 3, Lesley experienced symptoms before her diagnosis and has continued to have symptoms since that she attributes to her kidney condition. Her symptoms include: swelling (oedema) of the legs and feet; breathlessness (but she also has asthma); infrequent urination; frothy urine and/or nausea after eating certain foods; loss of appetite; tiredness, particularly after meals; restless leg syndrome after consuming carbonated drinks; itchy skin; and fuzzy-headedness. Lesley has also recently been diagnosed as having pernicious anaemia and deficiencies in vitamins B12 and D, for which she is receiving treatment. She has also had some polyps removed from her bowel.

Lesley has recently moved house and registered with a different general medical practice. She met her new GP for the first time yesterday when she consulted over a particularly bad episode of swelling in one leg. The doctor suspected an infection and prescribed medication. He also prescribed tablets to lower her cholesterol which she hasn’t started yet. At this introductory meeting with her new doctor, Lesley didn’t attempt to discuss her kidney problems in detail but hopes to do so in the future if the doctor appears receptive.

Lesley would like to have her kidney function checked regularly twice a year without having to ask for it, and to have access to someone with whom she can discuss her symptoms and how to manage them. She did once ask for a referral to a dietician but the one she saw didn’t seem to know as much as she did about what foods may help or hinder kidney function. She also looked into the possibility of consulting a specialist kidney doctor but learned that she needed a referral from a GP, so hasn’t yet asked for this.

Lesley had seen a GP about her swollen legs. She received a letter 2-3 weeks later telling her she had CKD3 and not to worry. She did feel worried and immediately made an appointment to find out more.

When I went to the walk-in-centre with my legs, because they were really swollen badly and I couldn't touch them, I saw a random doctor there and he said, "Your legs look really bad", put me on two or three furosemide tablets a day and …

No OK.

What's it called the tablet I had? Keep forgetting. Steroids.

Yep.

Oh he put me on three, two or three furosemide tablets a day and steroids, which I took for a week and then gradually reduced them, then the swelling started to go down. I just thought it was like a fluid retention thing, and then about, I don't know, two or three weeks later I came home and found a letter on my doormat from my GP to say that you have a CKD3. I thought, 'What's that? Chronic kidney disease, my goodness.' I read through this leaflet, which kind of said it's nothing really that much to worry about. I thought, 'Well I'm worried about it, I'll make an appointment and go and see this doctor'.
 

Lesley had struggled to obtain information from her GPs about her kidney problem and was worried that it might suddenly deteriorate. She would like to see a specialist but didn’t feel she could ask for a referral.

So you've had to look for information yourself, you've not got anything out of the health professionals really?

Nothing at all, nothing at all. And I think if you… and now I've been… had the Vitamin D deficiency and the B12, which comes into kidney disease, there's still nothing there. And it makes me wonder that are you going to suddenly drop and go into, like, 40 say, or 39? And then you're going go and see a - I think it's a nephrologist, isn't it? - a nephrologist to help you because I would have liked to have seen a nephrologist when I was first diagnosed, even if I saw him once a year just to talk about what's happened in that year or how I'm feeling or what we can just try and do. Well if you do this or that, so that you actually know something of what you're doing. But nothing, you know.

Because I think that’s what's going to happen – you're just going to suddenly drop and then you're going to want to see one. I looked online to , to see a private nephrologist which cost £200, and I thought, 'Well I'd pay that,' [coughs] – I'd pay two hundred pounds to see one just get me on the track, you know, even if it's just for half an hour to say, "Well this is what you should do, this is what you shouldn't be doing, you know, la la". But you have to be… when I phoned up to ask to see him, the lady said, "Oh you can't do that, you have to have a letter from your GP." I thought, 'Well that's that,' and I won't be getting no letter from the GP.

Did you ever ask to be referred to him?

No I didn't because the doctor I had at that time we'd already had a row, so I didn't want to push it with that particular doctor.
 

In the past, Lesley has found her GPs to be dismissive when she has tried to discuss her diet. She would like the opportunity to see a dietitian.

So did any of the health professionals suggest that you changed your diet or was that something you did off your own bat?

I've done it on my own. All that I have done is on my own because I feel there's not any help, and the GPs – if you try to say, "Is there something I can do to help myself?" they seem to not want to talk about it as if it's all pushed aside, which I feel is quite wrong really because, you know, if you go in your doctor's surgery today you will see a lot of leaflets on heart disease, on I don't know, a various range of things, but you'll never see a leaflet on kidney disease or what your stage… you're supposed to feel fine because it doesn’t really exist to them, but it does and you do get symptoms and, you know, I don't why they don't know that you do, I don't know. But I could sit and tell them that you do, and I would, yeah.

Mm so do you think you might go into it in more depth on a future occasion?

If I found the doctor was interested about it I would, definitely, but as to yet I haven't found that. I've found it's like push it away or, “Well we won't talk about that, what's wrong with you today?”, you know. But if I'm on a level with him and I can talk to him about it, and if I could ask him if I could see maybe a dietitian, which I have asked for before, which I did go, and when I got there the man that I saw said , I said, "Well I've come about… I've been diagnosed with CKD3 and I'd like some help on, you know, foods, of what to avoid and what to eat." He didn't have a clue, he didn't have a clue. He was telling me to go and eat all the stuff that I'd seen on the website that you shouldn't be eating, so I sat there in disarray thinking, 'Well this is a waste of time, I might as well just go,' and I didn't have any luck on that. But if this new GP I found comfortable and I did talk about it and felt he was listening, because I've never felt that they're actually listening , I would yeah, I would ask, “Could I see a dietitian?”, you know, although I know more about it myself now, but there still could be things I'm doing wrong. I'm not perfect at the diet, you know.
 

Lesley is concerned that her kidney performance may progress to a serious level within a few years and is frustrated that her GPs have not been monitoring her regularly.

Well as far as I understand it isn't going to get better. My level was at 60, it's now at 56, it's been at 53 – I can't see it going to 70 or 80 or 90 even, so I guess it's going to drop. It's dropped seven in the last two… just over two years but if it dropped another seven in the next two, and another seven in the two after that, then I'm looking at a serious condition. But if it drops like that each time, or whether it eases itself out because of my diet maybe, I don't know, but I can only help myself on that.

And it makes me think that because I've asked for my blood test to be done and I've asked for my results, it makes me think that I'm going to be at a reading of maybe 40 or high 30s before I see somebody regarding my kidney problem. And I think that's pretty poor, because anybody who can try and help themself before it gets to that stage is maybe helping to prolong to get into that stage, that's what I think.