And is that something that has been discussed with you, what might be treatment options in the case that your kidneys would decrease further?

No

It’s not something that’s been discussed at this point in time?

Absolutely nothing. All I’ve been told is that I keep having my blood tests, well monitor it and if things change or get any worse, then well have a look at it.

Mm and do you think it would be appropriate to discuss things in, just hypothetically at this point, or do you think that should be something that should wait as and when function decreases further?

I think if peoples well my kidney function, if it decreases to a point when treatment then it should be discussed then or when it’s getting close to that point. I don’t think it’d necessarily be appropriate now. I don’t think ones at a point where I actually need to give treatment or they can do anything, it’s just monitoring. And I don’t think you should panic people either because I think if you start talking about, “Well if it gets to this point, you’re going to have go on dialysis and, if it gets further you can be dead, you know, if you can’t get a kidney,” because that just panics people and I think unnecessary panic is not necessarily a good thing.

I think awareness is good, panic is not good.

And is there anything relating to kidney checks that you feel that you don’t know as much about as you would like to?

Yeah I’d like to know what these readings are that I get and what they mean and what they mean to me.

About how my body is changing, how my kidneys are changing. Yeah I think I might like to know about that so I’m aware. I like statistics, I like numbers you know, I work in that area, I teach that area and for me, yes, and I know it’s about individuals and I’d like to maybe know how my kidney function is maybe decreasing over a period of time, so I can see it falling.

But at the same time I can understand why my GP wouldn’t necessarily tell me that because don’t panic people, don’t panic me unnecessarily because it’ll just give me something to really maybe worry about.

Mm and do you feel able to ask those questions do you think when you next go and see your GP you might have some questions?

Well I did ask her last time and she said it was nothing to worry about. “It’s nothing to worry about, it’s just, you know, it could be your age, could be drugs, it’s alright; were just monitoring it, that’s why you have your three monthly, your three monthly blood test, that’s why we do them to monitor them. Don’t panic nothing to worry about.” So

So would it be fair to say that you sense a certain reluctance on part of the GP?

I think she doesn’t want to panic me unnecessarily and, and it’s just something that’s she did sigh when I came in and said, “I’ve been called back.” She said, “[Sighs] oh doctor, he doesn’t know you at all and it’s like just panic, hes just panicking and there is nothing to panic about so.”

How do you think your own kidney health will be in future?

I’ve got no idea. I’m hoping it will be as it is now. I’m hoping that weve, it’s come down to whatever it’s come to and I’m hoping that that will be it and it will just settle there and it won’t go any further.

Do you think it could improve again as well?

I’ve got no idea.

Do you think theres anything that you could actively do to keep it healthy?

I’ve got no idea.

But by and large you’d say these are concerns that are not right at the front of your mind at the moment?

Yeah. But if they were- well I wouldn’t know. I wouldn’t know what I would need to do to keep my kidney healthy or healthier than it is, I wouldn’t know what to do about that.

Yeah

So yeah.

Right I’m now going to ask you a little bit more about the nitty gritty of testing. So you’ve already mentioned it’s quite important because of the Lithium that you take it at a particular time. What do you feel about actually going and having the tests?

Doesn’t bother me, it’s part of my life. I just every three or twelve weeks/three months, depending on whether were on holiday or not, it’s part of my life that I go and do it’s a routine I’ve got into and that when I first started taking Lithium I was told I needed to make sure that the levels and everything were OK and that they monitored by bodily functions. So as part of my life, and it doesn’t bother me, it’s not intrusive, it’s a quick- you know injectionit’s a quick needle in, phials out and that’s it.

Mm and you don’t have a particular problem with needles?

I’ve no problems with needles at all, no.

I have to have my blood tests done in the mornings. This is one of my early morning starts I have to have because my lithium has to be taken twelve hours after I’ve taken it. So it’s quite time constrained to so I have them done in the morning and then they get sent off that morning and I normally phone up about two to three, normally about three days later

Do you ever forget phoning up for results?

Yeah I do. I do and I think about two weeks later, ‘Ah results, ooh yes I had some blood results going’ Normally I go past surgery, Must phone them up, and then I forget because I’m going to work or something and I get you know, and then it’s like nine o’clock I finish work and so, I haven’t phoned yet, and then I forget. So sometimes I do forget.

So what would you think it might be helpful to get them by post for example?

No, no because if you send things through the post and they are other than normal, people will just panic and you’ll have people going, phoning the surgery and going to this poor receptionist going, “Oh I’ve got your results, I don’t a) I don’t understand them and b) what do they mean, c) ooh they’re abnormal I need to see someone now,” and I think you’d have panic going and people won’t understand what things mean. So no, if you’re going to start sending stats out to people no people have got to be very, very educated about what they mean for that person as well.

And over the phone they would just say, the receptionist would say, “They’re fine. Theres nothing to worry about; are satisfactory,” are normally what they say. If theres anything else they would say , “Theres a little note on here, you need to come and see a doctor about this,” but normally they justthe receptionist says, “Yes they’re satisfactory,” and that’s fine, it’s normal.

Mm and if you think over the last few years because you’ve obviously had these check-ups for quite a long time now how often does it happen that they say, “You might need to come back and talk to a doctor?”

Rare, very rare. I had one a few months ago and that was about my kidney when a different doctor had reviewed my results than my normal one. As I say, my normal doctor was obviouslyknows how myhow things have gone down but very rare. Once I’d say and that’s it.

And in terms of the language that was used to describe your decreasing kidney function can you remember how the doctor explained what was going on?

They just said, “Oh your kidney function is, has just gone down a bit and it’s quite normal, it’s probably your age, your age group you’re now into; or it could be drugs, could be a combination of them and theres really nothing to worry about at this stage, it’s quite normal. We will just monitor what’s going on and if there is any further decrease then we would look at it and maybe take some action.”

So were there any values or numbers being used as part of describing was mentioned?

No I’ve got no idea what my kidney function is. I keep asking people and no-ones actually told me.

And are there any positives that you get out of having the tests?

I’d say no’ but I guess that if you have the tests then you know that, that there are no changes that you need to worry about in you find your body, your functions are OK, your levels are alright; you’re not poisoning your body by taking these drugs and that you need to take some action, so I suppose having said no there are no positives, there are in fact because it’s a reassurance point of view, you’re reassured that what you’re doing, what you’re taking is fine and that if there was anything wrong that it would be picked up and that action would be taken from there, so.

And what if any, would you say are the downsides of the testing?

None. I don’t mind at all. I’d rather have them tested and make sure that what I was taking was in was OK for my particular body, within my body constraints that they are fine and that if there was anything wrong that it would be dealt with.

So no, no downsides.

How do you think people could be made more aware of kidney disease?

I think GPs, I mean they promote a lot about don’t smoke, healthy living keep fit you know, in surgeries. I do and in like mental health you name it, they promote sort of have posters and things up but theres never I’ve never ever seen anything that I recall about kidneys and why kidneys are important. Now I know about kidneys, I mean did kidneys in biology A level, you know O level and A level so I do know a bit about… But it’s not promoted like your lungs are. Well if you don’t have kidneys you’re going to die unless you can get a transplant or whatever and yet people know about oh if your, you know, lungs pack up you’re going to die, but people don’t understand that kidneys are a very, very important organ of your body. Yeah you can afford to lose one that’s fine most people can afford to lose one. Some people only have one, most people have two, but if they are diseased and don’t work then it will affect your overall health and people don’t understand that.

What are your thoughts about why you have developed kidney problems?

I don’t know. From talking to people and reading stuff it could be my age because I understand that late forties, early fifties your kidney functions naturally decrease, so it could be my age and it’s just, over the last few years, gone down to due to that and it could be that my kidney function stays where it is now in which case theres not much point to worry about it. It could be that; it could be as a result of long term taking lithiumit could be a combination of those. So I don’t know.

Would it be important for you to know?

No because what’s happened in the past has happened so you can’t go back and turn the clock back. I would hope that my- my kidney function is continued to be monitored and if it does change then maybe they would do a review of my drugs and maybe decide what were going to do from there. I think at the moment it’s you know, it’s within a range that people could naturally get to my age so don’t panic, well just monitor and if things do change then well make a decision about what were going to do.

And since then I’ve been formally diagnosed as being bipolar. And as a result of that I have regular blood tests and from those blood tests it’s been identified that I’ve had an underactive thyroid because I have three monthly blood tests for- to monitor my lithium levels in my blood because they have to be at certain levels, so to make sure the dosage of the drug I’m taking is appropriate, relevant, not too excessive, not too low and working. I have three monthly blood tests for that and also I was then having six monthly thyroid blood tests at the same time and kidney function. My thyroids were then found, about three years ago, to have gone to be underactive so, as a result of those blood tests, that was picked up and I just take a thyroxine tablet to (excuse) that. And then my kidney function over the last probably two/three years has been going down and again that’s been picked up by these regular blood tests as a result of those and now I have every three months, when I have my lithium levels tested, I also have my kidney function test to see whether it’show it’s going; whether it’s decreasing or what’s happening to it.

So that’s where I am at the moment and they just say, “You’ll have your blood tests and that’s what they’re for, so that we can monitor things.” And what I have been told is that a number of people that are around my age will naturally get- their kidney function will naturally decrease so it could be due to my age. It could be due to the fact that I’ve been taking lithium long term; it could be a combination of the two and it could be that my kidney function just stops as it is now and doesn’t get any worse. So I don’t think my medical teams are particularly concerned at the moment, just that I have my regular blood tests and that if things get any there are any changes that then they would call me in and they could discuss from there.

So can you talk me through how you first found out, or how the topic of your kidneys was first brought up who raised it?

It came back because one of my blood tests apparently my kidney function had decreased oh no, it had decreased and they said, “Oh well just monitor that,” and then the next one they said, “Yes still decreased but don’t panic it’s not gone off any scale that wed worry about, it’s just that it is decreasing,” so it just kind of come up in conversation as talking about as- where things had happened.

So this was a couple of years ago now?

Yeah and more recently a comment was just made that another doctor was reviewing my blood tests and when I phoned up for my blood results which they normally say is yes it’s satisfactory or nothing to worry about, they said, “Oh you need to make an appointment, the doctor wants to discuss this, so I made an appointment, went to see the GP I normally see and she said, “I think the other doctor was getting a bit concerned about this; he hasn’t been reviewing what you’ve been on and it’s nothing to panic about, it’s just that your function has slightly decreased but nothing that we were terribly worried about at the moment, so don’t panic.”

OK and how did you feel about being told not to panic, did you find that reasonably reassuring?

Yeah I mean yeah if my doctor says I have nothing to panic about, then I would trust her. I say I’ve known her for a number of years so yeah I would trust what she says. I don’t think there is anything to panic about; I think I’ve got more things to panic about than than my kidneys at the moment. I don’t think they’re at a stage they wouldn’t do anything apparently at the moment anyway so.

And what would you say is, from your point of view, is your main health concern at the moment?

Keeping relatively well in myself. Just being generally well. Yeah.