And until I saw the renal specialist, to be honest, the only person to give me any information because I go so often for the warfarin blood test you get friendly with the nurses and I am not a quiet person. And I went in for a blood test and the nurse said, “What’s wrong with you, you’re quiet?” And I said, “I’ve got leaking kidneys and I don’t know what’s going to be,” you know. So she said, “Well that’s alright. Got a minute, I’ll go through it with you.” She actually told me more than the doctor.

Oh

And she also, she put me right in as much as to say, “They’ll do the test, they’ll find out what’s wrong, they’ll do the tests and then they’ll treat it. So don’t worry because until we know it’s something that’s dangerous or, you know, sort of serious, it’s not.”

Right so let me take me back. So you saw your GP, you got quite worried; you then saw the nurse who asked you why you were quiet and you said you got better information from her. What can you remember what kinds of things she told you?

She took my blood samples and she got rid of everything that we had to do, like you know the blood pressure and all the rest of it, and then she said, “Right now you have two kidneys And think of sponges; and fluid goes in at the top and it’s filtered; and the kidneys, that’s what the kidneys do. And as a rule all protein they take out before it goes into the urinary tract or whatever; and at the moment you’ve got” she said, “it might be both it might just be the one that isn’t quite filtering as it should. And theres plenty of reasons why it happens and theres plenty of drugs that they can give you to stop it happening. And you’re not on your own because theres plenty of people in your boat anyway, [laughs] so don’t worry about it.”

And I said, “And what happens if?” She said, “Well if that does happen I’ll be the first one and I’ll be with you and I’ll tell you.”

Mm. If what happens sorry?

Well I said what if the worst happens if, you know, it’s all very well saying, “We can give you medication, don’t fret,” but then you think there comes a time when they’re not going to be able to give you medication.

Mm but so did you feel slightly more reassured after talking to the nurse?

Yes.

What about lifestyle such as diet and exercise is that something that was discussed by the GP or your nurse or the hospital consultant in relation to your kidneys in particular?

When you go for your yearly MOT the nurse says to you “Your cholesterol level’s high or it’s low.” If it’s high shell discuss, you know, are you taking do you eat(whispers) cheese is my downfall.

And it’s, you know, sort of, “Less of the cheese if you don’t mind or less of this so you know, sort of take that steady, you’re not too bad but you’re just creeping up again.” When it comes to exercise she says to me, “Do you do twenty five minutes brisk walking every day?” Now, I can’t even walk to the bottom of the street. How on earth do they think I’m going to do a brisk walk of twenty five minutes every day? So then I got told, “Well no well we appreciate that; how about walk nice and steady,” and I’m using a walking stick mind, “Nice and steady, don t worry about it. Walk until you’re tired then turn round and walk back.” Now if you walk that way until you’re tired theres no point in trying to turn round and walk back again because you’re too tired!

So when you explain that they say, “Yes alright then; now how many times do you go up and down stairs in the day?” That’s enough [laughs]. Because all of a sudden they can see that it’s silly, theres no point.

What was going through your head?

[Laughs] everything you could think of. You’re wondering if it previous to that they I was called back a few years ago for a water sample again and I said, “What’s wrong?” And the nurse said, “It could just be just one of those things, don’t worry about it, but were just going to check and make sure.” One of the results came through – because you wait a week and then you have to ring in for them – and she said, “You’re back in range you’re alright, don’t worry, well see you again in six months as usual.” Oh that’s fine. But [sighs] But when I queried it with the doctor he said, “It’s alright don’t worry, you’re getting older. And your kidneys are the same age as you [laughs]; and they’re working every day. And they’re showing signs of a little bit of wear and tear it’s normal, don’t worry.” Which means worry.

So you were- that worried you.

Yes it does because when somebody tells you, “Don’t worry it’s alright, don’t worry,” you think, ‘Why is he telling me not to worry. And I am worried now,’ because it’s nothing, that you’re not expecting it and it isn’t normal.

So what kinds of concerns and questions did you have at the time? So this is four years ago now, or three years ago right?

Three years ago. Well I just said, “Well what’s going on, what’s happening?” and he just said, “You’re leaking, you’re leaking some protein; don’t worry about it. You’ll see a consultant and well take it on from there.”

Well I was sat with the doctor talking and hed gone through and shown me on his computer, had gone through my files and he had shown me all the different graphs and for the first time I was truly shocked at the readings that they’d got from my kidneys working. And he sat there and he just went through it.

And I had a better understanding and also a better understanding of him, and just as I was going he said, “I’ve explained to you,” he said, “would you do me a favour and take part in this?” And I thought, ‘Well if he can take the time to do that and put my mind at rest, then I can take the time, if I can, to put somebody elses mind at rest.

That’s really kind. So when he was showing you stuff on the computer what was it you were looking at then? Was it the different?

All the different graphs that the renal place had sent to him.

Yes

To the surgery.

So that wasn’t something you had a copy of before?

No because it was taken over a long period of time.

Hm mm

And the graph was it was going up and down and it-to be truthful you can sort of work out now that’s when they said, “Well just- well just check that.” And then another time when, in the letters, the consultant said, and I had the bloods re-tested. And then you can relate the two and you understand better what they’ve said in the letter.

Right OK so you were basically looking at a curve?

It was well it was yeh, yeh

Was it fluctuating quite a lot?

Yeh, yeh

Yeh

And then when he went onto to the next page and you could see it was starting to level off.

And that’s where you could see it had stabilised?

You see, now nobody had shown me that; now they won’t show you at the hospital because they’re not doing it. And the old GP, I don’t suppose hed even bother to look at it.

Mm so that was really reassuring to you to actually see that development over time?

Yeh

Well people that when you go to these places and you sit in the waiting rooms and you’re all in there for kidneys. And you’ve got people that are going back in there because they’ve had a transplant and they’re going for a check-up.

And they are very, very anxious to tell you that it’s alright, you know, theres a bit of pain but don’t fret, you’ll be alright [laughs], and I’m going back to work in a month, you know that’sfor them. To be truthful with you that’s the best tonic you can have because you see different – and they say to you, “I had that love, don’t worry about it.”

So since you’ve been having the annual tests with your GP, how do you find who carries out the tests when you go for blood tests there?

Flo: On your prescription it tells you a review date. And you don’t get another prescription once that review date is over until you’ve had your review.

OK

Flo: So you ring up and you tell them you want, you know it’s time for your medication review. Your nurse already tells you anyway that you’re going to have blood tests taken and to take a urine sample. So you go in, you take with you your urine sample, and the nurse asks you questions, weighs you, takes all any samples that

Fred: Blood pressure

Flo: And takes your blood pressure. And then you wait a week and you ring up to see if you’re all within reason and if you are you then make an appointment to see your doctor.

Hm mm

Flo: And he goes through your medication with you to see if theres anything that you’re taking that you shouldn’t be taking or anything that he thinks you ought to be taking as regards the results of the tests, isn’t it?

You know the only complaint I have to make about it is the fact that I’m only going there once a year now. I’m having the test taken but I’m only going to see the consultant once a year and that’s from August last year. I go August this year and they wrote a letter to my GP to say would he take blood samples and that. I’ve just had them done last week but our surgery doesn’t inform [hospital], my consultant, that I’ve had the blood tests taken or the results.

Right

Now I can’t see the sense in that.

So they are being asked by the hospital to take them but they don’t send the results back?

But they don’t and they take them, that’s not a problem, but they don’t relay the results to my consultant.

Right so when you go and see your consultant he hasn’t had the results then?

Well the other surgeries around here apparently do. And when I asked the phlebotomist at my surgery and she said, “No they don’t weve taken the blood tests and if they want them they must either come to us or they can get them off the computer, you know?”

Hm mm

So I says, “So they don’t even know that although the tests are going through to [hospital], and they’re at [hospital] and they don’t know it’s being done for me, for them?” and she said no. So I rang my consultant’s secretary and I said, “I’ve just had my test taken,” and she said, “Thank you very much I’ll pick them up this afternoon.”

OK

So that’s the way I get the results through because then they can if they decide that my blood levels are wrong or something like that, then they will then get through to my GP who will then ring me up and say, “Were changing your prescription.”