And my blood pressure, but my blood pressure is controlled, so you don’t, you don’t know whether these things are doing good or not. The only thing I can look at is the fact I haven’t changed very much really in the 16 years that I’ve had it, so I have to assume that I’m doing something right, unless it’s just the blood pressure tablets. I don’t know, I’d like to know, I’d be really interested in knowing anybody who’s had kidney disease as long as me, about the same, and how are they? How many other people are there that still haven’t failed very much?

Because when I was first diagnosed I was told that the chances of me failing in ten years were a third, so whether that’s still true I don’t know, so that, you know, at that time they, I think, they hadn’t really sorted out the blood pressure treatments. I think lisinopril is probably one of the very good, is it the AC? I can’t remember, I think it’s an ACE, I can’t remember. I think that one might be the one that’s helping, I don’t know, or it could be the complementary medicine that I’m using.

And luckily I’m quite responsible about it all and I have a blood pressure machine that I take, well actually having said that I haven’t taken my blood pressure for a while but I do take it sort consistently and I do, I do take it every now and again to see how I am. So I watch my condition and I, I try to learn about it and learn about different treatments and , which also scared me in the beginning, I saw all the different treatment that I might have to have. Oh the thought of dialysis is absolutely terrifying for me being that I’m a bit scared of needles. And these are quite big needles if you have to have dialysis, so I’m, I do hope that I don’t have to get to dialysis at any point because that would be very tricky, and I could guess that I would probably get depressed at that point possibly. Yes.

Is there anything else about the prospect of dialysis that’s scary or is it just the needles?

Ah well I don’t know if it’s scary but I hate the, I mean basically, depending on what, which type of dialysis you have, you might have to, you know, have three nights a week or three times a week where you’re going to have to go and have dialysis somewhere, takes a lot of time out of your life. I mean even if you’re doing peritoneal dialysis, you know, all the time, all of it’s going to take time out of your life and it’s a very big responsibility. If you do it at home you’ve got to have somebody with you to make sure you’re okay, they’ve got a big responsibility. You’ve got to have a room that’s clean enough for to have dialysis in etc. etc. It’s, the thought of dialysis is difficult because of all the limitations it puts on you, although from what I’ve read in the Kidney Federation magazine, many people live very good fulfilling lives and still having dialysis.

One of the things that worries me is the fact that you don’t feel very well I think. Oh the limit, the limiting on liquids is, that I think what? How can you, how can you limit yourself to that much liquid? Also I like a little drink, which probably isn’t – of alcohol – which isn’t very good for me probably. If I had dialysis what would I do about that? I probably couldn’t because I’d have to concentrate on putting liquids in me that are healthy.

I got some books in the beginning. I think they were from the library. Unfortunately I didn’t record the names of them because theres one I would have like to have re-read. Luckily I was contacted by the, I think it’s the Kidney Federation, and they send a magazine every so many months, which is full of very good information. They’re full of information; you can contact them and ask them, ask them about things, and they produced a book, I think it’s Kidney, kidney disease explained’, or something, which is very helpful. And I think the magazines have been very useful in telling me what it’s like for different people, and the different medicines that are used, the different types of kidney disease there are, and all that sort of thing.

But I think people are not told, are not told enough about their illness, enough to understand it, and how to maybe do something about it or to try to stop it getting worse if that, if you can. They’re just sort of given some pills and left to whatever really. Yes I would prefer it to be very different. And I think actually when I come to think about it would, it would save the NHS a lot of money if they helped people to understand their illnesses and try and do something to prevent it getting worse if they can. Whatever means that is, not just by taking medication, but by doing yoga or whatever. I mean yoga’s good because it can relax you and therefore your blood pressure will be lower and, you know, more exercise etc. etc.

So none of them have ever talked to you about your lifestyle and the things you might be able to do?

Actually my present GP has. And shes got me, I can get cheaper membership to one of the sports centres here, which I haven’t done because they’re actually doing it up at the moment and I’m waiting for them to finish, and then I’m going to, I think I get cheaper membership for so long. I think I get something like 12 weeks with a, with an actual person sort of training me or talking to me, so yes, no she has done something, and she does actually ask about my lifestyle. And I think various nurses have asked about my lifestyle, yes, at some of the surgeries, certainly when I’ve joined. I think that’s getting better, and I think that’s really important that you take urine tests off people and, you know, and blood tests just to check people, because that’s how my kidney disease was found, instead of me just going to failure, which is what happens to a lot of people.

So when they’ve asked you about your lifestyle have they ever suggested any changes to it?

No, no. It’s been me that’s said, Well should I reduce my salt? Should I drink less? I’ve actually had one GP say, Oh no, no, no just, you know, Don’t worry about your drinking. I think he must have been a drinker himself, because I think they should actually probably be saying to me, No you should reduce your drinking; it would be a good idea if you did. And the, yes, no, they’re not, they’re not talking about lifestyle, and I think, I’m really shocked about that actually; I’m really shocked that they don’t suggest that there might be things you could do that could help you not go to kidney failure, I think, or to change your diet in some way or, yes I think, I think it’s very, very important and would be so better for so many people.

You’ve picked up information about diet from the charity magazines that you get; is alcohol mentioned as a problem?

I don’t think so.

Because I think a lot of people make the assumption that it is but I’m not sure whether theres any official information that says it is.

I don’t know. I’m assuming that it might well be because it’s a toxin in my body that my kidneys have to get rid of. So yes, I have to assume, yes I think you’re right, I don’t think anywhere, anywhere has stated that alcohol could be a problem for kidneys and that you should limit your intake in any way. I’m sure they do if you go to dialysis, because if you can only drink, is it two litres of water? I can’t remember how much it is, it’s a very small amount of water really, or liquid, not just water, liquid, then they’re going to say, Don’t drink alcohol’, because you can’t, you need to have that liquid within your food that you’re eating.

I also tried various different types of therapies, I had homeopathy for a bit, I went to a herbalist for a bit, but I think actually the most important thing that I did as regards to complementary, well for anything really, was I went, I got therapy, which I tried to get on the National Health but the only thing they would give me on the National Health was joining a group of people with kidney disease. And I decided I didn’t want to do that because if I saw people that had failed it would make me believe that I, that’s all that was going to happen to me, and I didn’t want to do that; I didn’t, I wanted to believe that I wasn’t going to have kidney failure and therefore hopefully I wouldn’t.

So I had private therapy, I had therapy from somebody who was training, so it was cheap at the time, cheaper, and then it got more expensive. And I actually think that was really, really important. And the thing that I think might have helped to cause my kidney disease was that I was a very nervous person. I’m a lot less nervous now, but I was very nervous for most of my life, and still was nervous at the time when my kidney disease was diagnosed. So I think that fear, that constant fear may have damaged my kidneys because my body was in constant fear and therefore, you know, it affected them. Whether that’s right or not I don’t know but that’s my , what I believe or I think could have helped to cause it, and my therapy concentrated on that, so has helped me quite a lot.

And so with that and taking blood pressure tablets, I don’t seem to have changed very much in the 16 years. I had a little panic about five years ago when it seemed that my creatinine was getting more, it seemed like I was getting, my kidneys were getting worse, and I then went to get acupuncture and I’ve been having acupuncture ever since, which isn’t as bad as it seems – it doesn’t actually hurt to put the needles in, it’s when they tweak them, they tweak the needles and you go, Oh. And I get that about every six weeks, and in a way you don’t know whether it’s doing anything but I think acupunctures good for me anyway and she seems to help with other things.

So how many tablets do you take each day?

I take, I take two at night and I’ve always taken them at night, and that’s great.

Any problem with taking them?

Well it’s boring. I’ve got the days, I think it’s really important to have the days written on your tablets so that you know that you’ve taken it or that you haven’t taken it, because there are times when I’ve not been sure whether I’ve taken it or not. Or there was one time when I thought I’d taken two lots and I, I waited for ages in in an emergency unit and nothing happened and I went home eventually because they didn’t see me. But yes I think, I think to actually have the days on helps so you know whether you’ve taken it.

There have been times when I’ve mistakenly taken two of the same tablet. And what has happened at those times is I get a headache. And I’ve eventually learnt to notice this if I’ve got this headache; it’s a bit like a hangover, if I’ve got this headachey hangover thing it’s probably because I’m taking my pills wrong, and I need to look, and I’ve done that, I must have done that four times, I suppose that’s not very often in 16 years. If I had to take blood pressure tablets when I was younger, I think that would have been very difficult because I was, you know, I’d I was a lot more irresponsible and I’d have to be carrying my blood pressure tablets with me all the time to make sure I’d take them, and I think I would have forgotten them, yes. Where they’re now at my bedside so that it’s a little ritual that every night I’ll take my tablets just before I go to bed. So and theres been times when that’s, like when we went to the States, that was difficult to remember when you’re on a plane or, and then I was wondering what to do because I’d got an eight hour time difference, and things like that.

Okay well I think what happened was basically I was getting headaches. And I’d had headaches for, well they were sort of mild in the morning and then they got worse through the day and I didn’t know what they were. And I had them for about a year, maybe even longer, and I kept trying different things , like I wondered if it was certain foods or was it because I was sleeping near an electricity switch, all sorts of things, and eventually I went to my doctor. And then they put me on a 24 hour blood pressure machine. And that’s when my kidney disease was discovered.

I’m very lucky really because lots of people don’t get their kidney disease discovered until they fail or until they’re very near failure. I was at 50% kidney function when I was discovered and I’m only a little bit worse than that now. That was 16 or 17 years ago that it was first discovered. So yes I think, I think I haven’t failed partly because it was discovered early and that they could they could treat me.

Do you remember how you felt when you first heard about it?

Oh probably devastated, I think absolutely devastated, yes. I think I was just about to go on holiday, and they, I was told that I needed to take blood pressure tablets and I needed to start them immediately. I think if I hadn’t been just about to go on holiday I might have tried doing something else rather than the blood pressure tablets, like lowering my blood pressure in some other way, but I didn’t have the chance because I was going on holiday, they told me it had got to be immediately, so I did it, and I’ve been taking blood pressure tablets ever since. Yes I think I was, I was shocked, devastated, probably felt very alone with it because I was sort of in my forties, so I was young. I think I was – I don’t know if it was the consultant, was it the consultant or my GP who told me? – whoever, they mentioned that I was young to have it, because I think it’s, kidney disease is mostly an older person’s illness, but you do have younger people of course, in fact my, my relative was, must have been quite a little boy when they discovered hed got kidney disease, yes.

Yes anyway I was very, very scared and I got depressed, which was another reason for having the therapy actually, because I got very depressed. I think I got, there were things in my past as well that could have been connected with depression but this was the first time that I really, I really got depression. And my therapy eventually helped me to, to see it coming and not to go there really, so I’ve never been depressed like that again. But I was awful, probably for at least a year I would think, I was awful. And that was very difficult for my partner – who’s the same person I’m with now – because it was a young relationship and he had to deal with me being really awful actually and very, very despairing about it all. And I don’t think, I didn’t, I don’t think that the medical profession helped me with that actually at all. Yes I was very disappointed because they, again because I was trying to get therapy from the NHS and they weren’t willing to do that, and they didn’t help me through this very depressing period. Yes so , but I’m much better now.

So is it a good thing or a bad thing that you know that your kidneys are not working properly? Because I mean the doctors just could have told you that you have high blood pressure, end of story.

Ah for me it’s a very good thing; I’m very glad that they told me because then I could, I’ve done various things because I knew it was my kidneys. For instance the therapy and working on fear, which is related to kidneys, yes, and I wouldn’t have done that if I hadn’t have known. Yes I think it’s very important that they told me.

So how would you feel if your doctor wanted to change the way you are monitored, for instance make it more often?

Oh I’d probably be irritated actually; yes I prefer to do it as it is. As long as my condition doesn’t, if my condition does change then, then I’m sure I would agree to being monitored more if my creatinine ratio goes down more, then I would agree to be monitored because yes, I’d want to know what was going on. I think for me it’s very important that I know what’s going on and what’s happening in my body and how it is, so that I can at least try and do something about it, whatever that might be. For instance I suppose if they started to fail I might actually really manage to say, Right, alcohol go’, or yes, you know and I might then think, well no I’m not sure, I was going to say no crisps but I’m not absolutely certain about that, I think a little bit of salt’s alright, you know. I can’t, yes.

So what if the doctor said, Actually we don’t really need to test you as often as every six months, how about every year?’

I wouldn’t, I think I’d probably disagree, I’d probably want it every six months. Yes, I think that’s what I’d like, yes.

Because it gives you reassurance?

Yes.

Yes.

Because I’d know, I then know how I am and if I’ve changed at all, yes.