Simon

Age at interview: 56

Brief Outline: Simon’s kidney function has been damaged by long term use of lithium to treat bipolar disorder. His kidney health is monitored by his GP and a specialist. He is also treated for high blood pressure, high cholesterol, and atrial fibrillation.

Background: Simon is married and has an adult stepson. He is employed by the local authority as a support worker. Ethnicity: White English.

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Simon has taken lithium to treat bipolar disorder since he was eighteen. When in his forties his GP called him in to tell him that long term use of lithium had impaired his kidney function. He had not previously been aware that this could happen and, although he had regular blood tests, he had only ever been told that the results were fine. He wonders whether there had been any alternative at the time that could avoid kidney damage, but is grateful that the lithium had been effective in stabilising his moods.

After being told about his kidney impairment Simon was referred to kidney specialist and a psychiatrist. He was offered alternative drugs to lithium but as his mental health was stable Simon didn’t want to disturb his equilibrium. But on advice from the kidney specialist he has reduced his lithium dose with no ill effects and blood tests show that his kidney function has improved. He knows the damage cannot be entirely reversed but hopes it can be limited. He sometimes senses a coldness in his back and an occasional twinge and wonders whether this is to do with his kidneys.

For many years Simon has also taken medicines to control his blood pressure and cholesterol levels. Then two years ago Simon developed atrial fibrillation and had a pulmonary embolism a few weeks later. In addition to lithium he takes warfarin, simvastatin, doxazosin, amlodipine, ramipril and sotalol. He uses a dosette box to organise his tablets and wishes he didn’t have to take so many. He has a slight cough as a side effect of ramipril and shaky hands from the lithium, although the latter has lessened since reducing the dose.

Simon has blood tests three times a year at his GP’s surgery and also sees his kidney specialist annually. The specialist shows him a graph of his kidney function test results, which Simon can also access via a website. He feels reassured by being monitored regularly but cannot help feeling anxious before appointments. He hopes to remain as well as possible for as long as possible. He would like to lose some weight in order to improve his kidney function further and other aspects of his health, but finds it difficult to motivate himself to make major dietary changes. He has reduced his alcohol consumption, mainly because it seems to interact with his heart medications. Certain foods have to be avoided because they interact with his tablets but he would like to be told what foods to avoid to improve his kidney health, and to be offered more help with losing weight. He believes that, since the kidneys are vital for life, the public should be made more aware of the various things that can impair kidney health.

Simon found out that his kidney function was decreased when his GP asked to see him for a medication review. He has since reduced the amount of lithium he takes for his bipolar disorder.

So tell me again how the subject of your kidney function first came up and?

Well, I made a, no, I was called in to my, where we used to live, at the health centre, the doctor called me in and said he wanted to talk to me about, you know, one or two health issues. I’m not sure whether he specified what they were on the phone but I said, “Okay, well, what’s all this about?” And he said, you know, it’s, I really can’t remember exactly what he said but it was along the lines of isn’t it time a lot of this was reviewed, full stop. Because, besides all the heart stuff that I’d had last year and the lithium, bipolar, alongside of that, all this time I’ve had high blood pressure, and they were monitoring that as well and so I’m, presumably, they just did a bit of a screen and there it was, let’s have a look at this.

But, as I said, you know, in my mind, for many, many years, lithium equalled stability and, for that reason, I didn’t interfere with it, neither did any of the GPs that I saw, you know. They, “Oh, you’ve done really well. You’re happy”, and everything else. I did, obviously, have to take blood tests but they were blood tests and, “Oh, your blood tests have come back all right.” That’s all you need to know, isn’t it, at the time. You’re not really going to go into the nitty gritty of it. But when somebody says to you - this is when I was about forty odd, you know - “This isn’t going to do your kidneys much good if you keep at it”, and there are other medications available now. I thought, you know, that was the time that I had a big, big rethink about it and I think it’s worked out okay.
 

Simon explains why he likes to see his kidney specialist once a year as well as his GP several times a year; his consultant had been on hand to clarify his suitability for an unrelated hospital procedure.

So why do you think you need to see the nephrologist as well as the GP about your kidney function? What are their different roles in this?

The, I think that that it, from the outside, it would appear that there’s no need to see both, but from my point of view, I think it’s good that somebody is charting a particular aspect of my health on a regular basis, is looking out from an expert point of view, from the kidney function, for things that might and could go wrong or things that could improve my condition. And the GP is there for more, like, day-to-day maintenance, if you like. As far as my nephrologist as well, what you have to remember is that it was almost like a coincidence that the time that I was ill with my pulmonary embolism, was the same week that I was due to see the nephrologist. And because of my kidney condition, if you like, there was a question mark as to whether I was fit enough to have a CT scan. Now I saw him on the Thursday as an inpatient, if you like, although I was an outpatient in the same hospital and he gave me the go-ahead. He said that, you know, things had improved so much that you, you know, there was no problem in me having a CT scan. The alternative was to have another kind of scan, which I would have had to wait ages for and would have been much more complex and I would have had to have gone onto another hospital. But, you know, then they could tell straight away and you don’t really want to mess about when you’ve got a pulmonary embolism.

So, you know, he, that was lucky and I think it’s just a case of okay, if he said to me, next time I see him this this spring, “Well, I think you’re fine and I’ll discharge you now”, well, that, obviously, I would have to accept that and, you know, think, ‘Well, okay. That’s good. I’ve done everything that I was supposed to do’.
 

Simon can’t remember the exact level of his kidney function but he can access a website where all his results are stored as a record for both him and his specialist.

So what is your understanding currently about the current performance of your kidneys?

It’s better than it was. That’s all, all I can say for sure. The last time that I had the blood test taken was that it was good. They, there was some question about the blood sugar levels but then I think, you know, if you, if you look at the overall picture with me, then that may be an issue as well with somebody of my size but, at the same time, they’re better, yeah.

So do they actually tell you the numbers?

Yes.

The results, so…

Yes, they do.

…do you know off the top of your head?

No.

No. [laughs]

No.

And you.

But there is this website that you can go to called sorry.

Kidney patient view?

Renal patient view.

That’s right, and I have been on that and it’s got, you know, you can, I’ve got an identification number and you can look up all your recent results on there. So should somebody ask me, like you just did, if I’ve got the password I could go and find it for you.

So yeah, it’s good because it’s not just the property of the doctor, it’s mine. That’s very important. And I think that, you know, everything in in in medical health is a two way street, isn’t it? You have to, a doctor can only give advice or prescribe but, at the same time, it’s up to you to take tablets. You don’t have to take them. It’s up to you to take advice. If he says to you, you need to go on a diet or take more exercise, there again that’s up to you.
 

Simon would be prepared to change his diet if it could help his kidneys. He would like his GP to be proactive in discussing his weight.

You mentioned that you’d quite like more information about diet but you also told me earlier that you have been advised to do things that you’ve not actually…

Well, not necessarily… diet, but the things that can affect your kidneys in the normal course of what you eat and what you don’t eat. I mean for, on the, on the same level that because I take simvastatin, I can’t eat grapefruit. Because I take warfarin I can’t have cranberry and vitamin K in sprouts and vegetables and all the rest of it. What sort of things would help if you wanted to improve it, diet obviously, you know, eating more healthily is what I would like to do. And I’m not saying that I don’t eat healthy things now but, you know, there are things that obviously, can be done.

I’m not saying that I would say no to ever changing my lifestyle in that respect. I think that with me, it’s a case of either doing it very slowly or very religiously and very drastically, and I’m usually falling between one or the, one or the other. I mean, you know, I mentioned that that that it, the medication as well as the lifestyle has meant that I drink less alcohol now. And it’s a case of thinking, ‘Well, okay, if you do that and you have that, it will help’. So yeah, I am willing to. It’s just that when you get through this particular part of the year, we haven’t because we’ve been so poorly, but everybody eats such a load of old rubbish and it’s this time of year when everybody starts thinking, ‘Oh yeah, better get myself fit. Better get myself better food and everything else’. And we have, you know, last couple of weeks, but I think you can only really start eating better when you feel better yourself. I know it sounds funny but when you’re feeling like absolute rubbish you want to eat rubbish. Anyway, that’s very honest [laughs].

[Laughs] so you would like, I think, some more factual information about what foods have an impact on kidneys.

Yeah.

Rather than just being told to eat healthily.

Yeah, and the other thing as well, is, you know, people to tell you that as well. I mean my GP, has in the last few times, altered my blood pressure medication, and he said to me three or four times ago, “Yes, it would be good if you lost some weight.” But he only said it that time, and because he hasn’t said it to me since, [laughs] then it hasn’t been discussed. But then I think that’s me being naughty. I don’t know.

I don’t deny that food is one of the main pleasures of my life but I do understand what bad diets can do to you. So yeah, that would be very good. So no, attack it on both fronts just say, “Look come on, chubba. Get some weight off.” Or, “These, you know, are the things that it would be good if you could eat.” Or, “Eat less of these things.” You know, I’ve had it all for the warfarin , for the pulmonary embolism. So, you know, if I’d had more for that, then maybe that would have been good. So, yeah, get more in the future. Maybe I’ll consult my nephrologist when I see him.
 

To help him remember to take all his medicines Simon organises them two weeks in advance using a dosette box. Swallowing them can sometimes be a problem, as can dropping them on the floor.

So it’s quite easy to remember, once I’ve got everything sorted out, but I suppose if I got a bit older, the more forgetful I’d get, I’d get the pharmacy to blister it for me. But I quite enjoy, actually, putting it all in the dosette box.

So you use one of those dosette boxes?

I do it on a two weekly basis, yeah. Yeah, yeah.

Does that make it easier?

Yeah, well, I take my warfarin at tea time, so my warfarin is in the kitchen, so the only time I’m likely to forget it is if we go out but that doesn’t happen very often. So it’s like when I get in from work, I take my warfarin, and then everything else is in the box.

So…

Four section boxes, one for the morning and one for the evening.

Okay so how do you feel about being on so many medications?

I don’t like it. Nobody would, would they, really? I mean it’s just a heck of a thing to have to keep remembering. No, swallowing is sometimes a problem and if you do, you know, take your tablets last thing at night and you don’t switch the light on and you maybe drop one on the floor, that’s a bit of a pain. One of the other big pains regarding the tablets themselves is that the 200 milligram tablets of lithium are exactly the same in diameter and shape to the doxazosin I think, yeah, I think it is the doxazosin, little, you know, oblong capsule type shape. But hey ho.

And…

[Laughs]

Taking all your meds on work days is not a problem?

Well, no, because I take the sotalol before I get up and I’m home before I have to take my warfarin. So yeah.
 

Simon hopes that his kidneys will work sufficiently well for as long as possible so that they don’t cause him any problems. He is grateful that his condition is being monitored.

What do you think might happen with your kidneys in the future?

Well, I can’t donate them. I did ask. But I just hope that they do the job that they’re supposed to do for as long as they’re, as they can. I mean, obviously, I’ve had a few things that have made me sit up and take notice recently. And my health has been - what’s the right word? - compromised on  many levels. I just want to live as healthily as possible but I’m very grateful that people who are in in the know, are watching it to make sure that, you know, anything that I can do to help or need to do is being done.
 

Simon feels there are things he could do to improve his health, such as losing weight.

Do you worry about the future and your health?

I try not to. I think I’m like everybody else. It isn’t a case of burying my head in the sand. It’s a case of get through every day. And sometimes, I know it sounds very corny, but I do, do feel grateful that with each day that comes because I have been through an awful lot. But, at the same time, I feel that I should try and do all I can to make it as good for myself as I, as I possibly can [laughs]. I really would like to try and lose some weight. I really do feel my health could be better and there are things that I should be doing that I’m not doing. But, at the same time, as far as any medication, I’m receiving any medical support that I have, you know, I’m very happy.