John

Age at interview: 75

Brief Outline: John has high blood pressure and osteoarthritis. He has had surgery for spinal stenosis and three knee replacements. His decrease in kidney function was discovered during a routine blood test.

Background: John is a retired lithographic printer. After taking early retirement in 1989 he worked as a magazine circulation manager for his son-in law. He has 3 children, 9 grandchildren and lives together with his wife. Ethnic background: White British.

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John has high blood pressure, osteoarthritis and a hiatus hernia which he has managed to control for the last 20 years. He has had knee replacements in both his legs, which themselves are now in need of replacement. He has had one knee done and is awaiting the operation for the other one.

In 2011, John developed pins and needles in his toes. An MRI scan showed that his osteoarthritis had caused spinal stenosis (nerve compression due to a narrowing of the spinal canal). An operation on his back helped to alleviate the problem and John feels generally in pretty good health for his age now. He is able to take longer walks again and he plays golf twice a week.

However, as part of the checks for the operation on his back, it was found that John had a reduced platelet count. This was a very anxious time, as there was a suggestion that he could have leukaemia. John decided to use his private health cover to have further investigations as he wanted to have an answer as quickly as possible. Luckily leukaemia was ruled out but there was no conclusive explanation for the drop in platelets, so John requested to be monitored every six months for his own peace of mind.

More recently, John has started taking medication to help control his high blood pressure and cholesterol. He is taking an ACE inhibitor (perindopril) and simvastatin. He was not keen on taking medication at first as he saw it as a sign of weakness. Also, John’s mother had developed kidney damage from the drugs she had been prescribed for her rheumatoid arthritis, so John was very aware of the negative side effects medication can have. However, he was able to discuss his concerns with his GP and was glad that the GP did not try to force him into it. In the end, he decided taking the medication was better than risking a heart attack. He now finds taking his tablets straightforward, though he sometimes forgets a dose.

John’s decrease in kidney function was detected only recently during one of the routine blood tests that also checked for his platelet count. His GP asked him to repeat the test to make sure that it was not a ‘rogue reading’. He then explained to John that he had early stage Chronic Kidney Disease but that it was unlikely to cause him any problems “for another 30 years” which at the age of 74 did not overly concern him. His GP also explained that his kidney function was negatively affected by his high blood pressure. John bought a home blood pressure monitor and started using an App, BP Monitor, to record his readings and managed to bring down his blood pressure with medication, diet and exercise At a recent GP appointment, John was told that his blood pressure is now ‘under control’. When John suggested that he might use his private health insurance to see a consultant for a second opinion about his kidney function, he was told that his last two tests were ‘normal’ though his GP did not tell him any specific test results. John now feels sufficiently reassured and no longer considers himself to have a ‘kidney problem’.

John is pleased that his GP has organised for all his regular tests – kidney, liver, and platelets - to be rolled into one visit to the nurse in future. John is glad that his GP told him openly about his decrease in kidney function. He thinks GPs should be sensitive enough to know how much information each individual patient can cope with. Also, GP surgeries should be more proactive in encouraging patients to have check-ups, though he acknowledges that they operate under financial constraints.

John thinks of his kidney impairment as a normal part of getting older. His GP assured him it was unlikely to become a problem for 30 years.

Now, coming back to when the GP told you you’ve got chronic kidney disease, what kind of things were going through your mind?

I wasn’t worried. …I wasn’t worried. As I say, I was seventy four and he told me, you know, it won’t be a problem for thirty years. And I probably could have… ah, you know, there was there going to be a cure, you know, dialysis or something, wasn’t there, you know? so I wasn’t really worried about it. …It’s the sign of ageing really, you know, I’ve lost my hair, lost my teeth, lost my waistline …so it was just …part of getting old you know, and that’s what, what I expected.
 

John appreciated his GP taking a direct approach and telling him he had CKD. But doctors need to be flexible in how they communicate a diagnosis to individual patients.

What was your understanding of the term ‘chronic kidney disease’ at the time?

Well, I know that chronic means a long standing, you know. It’s opposite to acute. But… he was quite reassuring, in a way, by telling me that there was no immediate…. problem.

What we’ve found to find in this study is a lot of GPs do not tell their patients. They don’t use that term because they think that it might be….

Oh I see, I see where...

Yes.

I can see where you’re coming from.

So I am wondering, having been one of the people who has been told this, do you think it’s a good idea for GPs to use that term with patients?

Yeah. Yeah, I do. Yeah, I wish, yeah, I wish they would be more direct and say, “this is- this is your problem”. “We can help you” or “we can’t help you”…and so you’re in, you know, you’re in no doubt. Where people fudge around and try not to hurt you, I don’t believe in that.

I guess GPs reasoning is that they might not want, they feel they might not need to tell people something that is not going to cause problems for them anyway, as long as they can keep an eye on them.

Yeah, I understand that and the GP… he’s got to use his judgement and say, well, this man or this woman can take it and that man or woman …it’d be perhaps better if we didn’t tell her or if I tell this person, he’s going to be one of the worried well, that’s going to be down there all the time, you know, and there’s no need for them to keep turning up… taking up my time, which I could use, you know, to a better effect. Yeah, I understand that, but they should be able to judge, It should be, I mean they’re intelligent people to be GPs so they must know, they should be able to judge people to see what they could actually, what form they could take it in.

So you would advocate a sort of flexible approach to how much information is given to the patient…

Yeah, yeah. Yes.

On an individual basis.

But as a person, I would I would rather that they said, “well, this is what you’ve got.”
 

John has started taking an ACE inhibitor to lower his blood pressure and will be monitored to ensure this drug does not adversely affect his kidney function; in future all his health conditions will be monitored through a single blood test.

You know, it’s… the last two tests were… were fine. The tests I’m going to have in future, really are to see if the medication I’m on is causing any problems. So it would be a kidney test, a liver test and the platelet test and he’s tied it up so they all coincide now, you know, get back into a- a rhythm. So he said, come back in about June-ish… and have another blood test and then they’ll all be in the same cycle.

But it’s really for to see what effect, side effects the medication is if they’re causing or if they’re not causing any side effects.
 

John had three tests in a row that showed his kidney function was dropping, so he was diagnosed with chronic kidney disease; his kidney function has since improved through controlling his blood pressure.

And now tell me in a bit more detail about how the kidney came into the picture.

Because they give you a general blood test, which picks up all the other functions and that was one they- they decided that the kidney function was… getting lower and lower.

And can you tell me, did you have a series of tests when that was discovered or?

No, only just the previous two, were obviously, were lowish and then getting lower. So he sent for me and he gave me another blood test… which was still low, which meant, you know, three blood tests on the trot meant that you had chronic kidney disease.

But then they got the blood pressure under control… and the kidney function improved.
 

John only uses reputable websites to look up health information. He was reassured by the information he found about kidney impairment.

No… I looked up the NHS site on the on the internet and it said that most people have, you know, when they get to my age, have got some problems with their kidneys.

Did you find that information helpful?

Yes, I did. Yeah, yeah. It’s a good site, the NHS.

That was NHS Direct was it?

Yeah.

Or?

Yeah. No, no, I didn’t, on the internet.

They’ve got, you can just any illness or condition you can find on there. I thought it was quite good. And I also looked on the Mayo Clinic, the American site as well. I mean I- I’m a great believer in the internet but I think you’ve got to be very careful what…what credence you give it. …And so I’ll only go on a well-known reputable site like the NHS or the Mayo.

And can you remember the kinds of things you wanted to know and that you learned from the website?

I can’t because it’s, it didn’t it didn’t worry me that much, to be honest with you, and I thought I’d just check and it didn’t, it just said that most people got it and you know? it’s so it’s so… it’s life.
 

John had been reluctant to take medicines at first and talked to his GP about possible side effects and the risks of refusing treatment. He has now become used to taking his tablets.

And how do you feel about being on medication?

I didn’t want to go on it because I I’ve got to seventy four without taking anything. I suppose I saw it as a sign of weakness thing that I had to start taking medicines. … But no, I don’t- I don’t mind now. No, I’ve got used to it now.

So how involved were you in the decision to have the medication? Did you, what kind of discussion did you have with your doctor?

Well, I had quite a long discussion with the GP because I was a bit reluctant. But he did he did he didn’t try and force me into it. He said, “Well, I’ll leave it up to you.” …And the way I think is, what’s the point of going to the doctor if you’re not going to take any notice of what he tells you. I mean I talked to some of the old boys up at the golf club… and they’re on statins and they’re all moaning about the aches and pains and leg muscles don’t work and they get pains. …But I’ve never had any problem and why would I listen to a couple of old duffers at the golf club rather than the GP, you know, so.

What were your main concerns?

[Sighs] side effects.

And so that was particularly about aches and pains that you heard from...

No, any side effects because my mother, she had rheumatoid arthritis for thirty years and she was on all sorts of… medication and, eventually, it ruined her kidneys. She died of kidney failure when she was… sixty seven. Purely because of the medication. And, when I spoke to the doctors about it and they said, “Well, she had thirty years of…relatively… pain free life, what would you’ve rather had? You know, she lived longer or and was in pain?” So, and I know all medicines have got. Side effects of some description, you know, but I don’t I don’t appear to have any side effects with either the statins or the- or the ACE inhibitor.

Did the GP offer you any information to reassure you about possible side effects or convince you about why it would be a good idea to take that medication?

Well, he didn’t really much talk about the side effects but he did convince me that it was… it was better than having a heart attack.
 

John believes that at age 75 he is ‘over the hill’ and his health will only decline, meaning that his kidney performance will not get any better.

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

Well, I suppose it’ll be like the rest of my health. You know, it’s not going to get better is it, not my health generally is- is- is in decline, you know. I’m past my sell best-by or sell-by date so …to be realistic, [sighs] I’m in the general decline, you know, just I’m over the hill and I’m gradually sliding away [makes sliding motion with his hand], you know? I’m seventy five so I’m not going to live forever.