A-Z

Peter

Age at interview: 50
Brief Outline: After his discharge from hospital in February 2013, Peter has made a slow but steady recovery. A couple of months ago he found that medication he was prescribed to remove excess water from his heart and lungs had decreased his kidney function to 30 %. It has since gone up again to 40% and he is being monitored regularly.
Background: Peter worked as a railway signaller until he had a massive heart attack in January 2013. He spent a month in a coma and doctors thought he was unlikely to survive. The near-death experience made him re-evaluate his life. He has three children and currently lives by himself after recently separating from his wife.

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Peter worked as a railway signaller until he had a massive heart attack in January 2013. He was successfully resuscitated after his heart stood still for 45 minutes, but then spent a month in a coma. Doctors thought he was unlikely to survive and had actually started to consult with his relatives about withdrawing life support.

This near-death experience led Peter to completely re-evaluate his life which he describes as completely changed from before the heart attack. He had to accept that it takes him much longer than it used to do certain tasks, but he now has much more time. He is no longer able to work in his very physical job, and his recovery since his discharge from hospital has been slow. He can’t currently take much exercise beyond taking his daughter’s dog for short walks and is on the waiting list to have a pace-maker fitted.

After his initial discharge from hospital, Peter expected to be contacted by a district nurse but nothing happened. When he eventually asked his GP about his follow up, a nurse visited him to take his bloods and found that his potassium levels had become dangerously low, so he had to be readmitted to hospital for a week.

Peter feels very lucky to be alive and treats every day as a bonus. He has to take a multitude of tablets at various times of day, including aspirin, ramipril, bisoprolol and isosorbide for his heart, metformin for his diabetes, and amitriptyline and zapain as painkillers and to help him sleep at night. Some medications have to be taken with food and the timing is important. In the early days after discharge he found it difficult to manage as his head felt ‘fuzzy’, but his daughter was a big support and helped him to take his medication correctly. He has also been prescribed a nitrate spray to relieve attacks of angina and makes sure he always keeps a spray in easy reach. Peter experienced some side effects from the initial statin he was given (simvastatin) - severe, shooting pains in his legs– and consulted his GP who changed the prescription to rosuvastatin. However, this second statin gave him nightmares and insomnia and made him feel like he was drowning when he lay down with his eyes closed, so he now takes a statin alternative to help control his cholesterol. He also continues to experience pain and burning sensations in his legs. He does not like to take painkillers and has now stopped taking amitriptyline but sometimes finds it difficult to cope without them. He feels that he has not had a satisfactory explanation of why the pain in his legs seems to continue with very little improvement, even 15 months after his heart attack.

Peter regularly makes use of the internet to find out health information. He found it helpful to read about side effects from statins similar to his own that other patients had experienced and this gave him confidence to broach the subject with his GP. He does not find it difficult to ask questions of health professionals, but it can be tricky to remember in the flow of the consultation, so he has found it helpful to write down his questions beforehand.

A couple of months ago, Peter found that he was passing blood in his urine. Initially he was very concerned that this might be a sign of kidney failure, but it turned out to be cystitis instead. His doctor explained that having a catheter can make people more susceptible to cystitis.

Peter knew that while he was in a coma, all his vital organs had been at risk of ‘packing up’, but in the months following his discharge he had attended his routine check-ups without giving particular thought to his kidneys. However, a couple of months ago his GP told him that his kidneys were ‘working too hard’ and their function had been reduced to 30%, probably due to the diuretic medication (furosemide) he had been prescribed to remove excess water from his heart and lungs. His GP adjusted the dose of furosemide and referred him to a renal consultant for further follow-up. Since then, he has been attending check-ups at the hospital instead. At Peter’s last hospital appointment, the renal consultant showed him a graph of how his kidney function had been affected over time. He was able to see that since decreasing the diuretic medication a couple of months ago, his kidney function has recovered to 40% and found this reassuring. He feels that his kidneys take ‘third place’ after his heart and lungs, and since his consultant is not overly concerned, there is no reason for him to be either.

Since his hospital stay, Peter has become quite apprehensive about having his blood taken. He now makes a point of telling the nurse in advance that his veins are difficult to target and that they need to take extra care.

Peter currently attends check-up appointment at his GP surgery every 4-6 weeks, in addition to his hospital appointments. Communication between his GP and the hospital seems to work well, but in his experience, doctors and nurses don’t give feedback about tests results to patients unless there is cause for concern. While Peter would like to receive more information about why he has to have certain tests and what the results are, he also thinks this might be difficult to achieve within the NHS, due to cost and time constraints.
 

Peter thinks people should be told what they are being tested for but believes that it may do more harm than good to inform people of a mild impairment that does not cause symptoms.

Peter thinks people should be told what they are being tested for but believes that it may do more harm than good to inform people of a mild impairment that does not cause symptoms.

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Do you think that people should be told if they have a mildly decreased kidney function? Or is that something… is it right to only tell them once they start to develop more symptoms?

Yeah, I think the second thing you said was the better one because… some people if you told them they had a slightly decreased function in their kidneys they would worry about it and… that would make them upset about a lot of things wouldn’t it? About their mortality and what's going to happen and are they going to lose a kidney and if they don’t know that they can't react like that, can they?

So you think there are good reasons why maybe GPs carry out these tests without telling people what they are doing?

Yeah, I think maybe when someone like me who… before I had my heart attack I hadn’t seen a GP for… oh I don’t know, twenty years… I think when you… something like what I had happen, afterwards they could tell you “we're going to give you regular blood tests and this is what we test you for.”

“We test you for liver function”; maybe they do… did I say liver function yeah? Maybe they do, maybe they don’t or kidney function; they can test your blood sugars, they can test your iron levels, blah di blah di blah; they should tell you the once when you start your programme, so at least you know what they're testing for.
 
 

Peter starts to sweat if it takes more than one attempt to get blood out of him; he now asks the professionals to try harder to succeed at the first attempt. When used a lot, his veins collapse or roll away from the needle.

Peter starts to sweat if it takes more than one attempt to get blood out of him; he now asks the professionals to try harder to succeed at the first attempt. When used a lot, his veins collapse or roll away from the needle.

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Can you tell me a little bit more about the routine tests or, you know, check-ups you were having at the time?

Don’t talk to me about those [laughs]. I never used to have a problem with people taking blood out of me because after the hospital they were taking it out left, right and centre, everywhere, all the time. But what used to get me was when they would take three or four attempts to get the needle into your vein.

And I became a bit paranoid about it. So I had to tell- every time I had a blood test I had to explain to the nurses and doctors like, "Oh do you mind… just taking a minute just to make sure you find a vein," because I was fed up with being pricked here, there and everywhere like to get- get the blood out. And if they did that they used to do it the first time and I was alright with that but as before as soon as they tried a second time or third time I would come over in a flush [stroking his forehead] – I'd start sweating in a hot flush – so it did affect me quite a lot.

Funny the last- when I went to [hospital name] when my daughter came with me, she said, "Oh well don’t tell them this time Dad, see if they’ll do it first time… without you telling them you’ve had problems in the past." I said, "Alright I'll try, I'll try it your way," but sure enough I went in, I didn’t say anything and sure enough first time, no, she couldn’t take it. So she had to get her… the nurse in charge to come and do it sort of thing. "There you are [daughter’s name]." [smiles] So that’s the way I deal with that… because I've had so many blood tests that I've become paranoid about needles going in me.

Where it's not a bad thing, it doesn’t hurt that much or anything like that, it's just when they do it more than once you feel like a pin-cushion.

Mm, yeah.

Yeah

So …what- so you’re trying to talk to the nurses beforehand?

Now I do, I do, yeah.

And have you found is it getting any better, is it getting worse?

Yeah if I tell them, if I tell them before they're very good, very understanding and they do spend a bit of time checking where the vein is properly.

And not just trying to find it with a needle sort of thing.

Yeah

Yeah

Does it make you more anxious for when you have a check-up appointment due; do you think about it beforehand?

Not… no because I know the routine now, I know- I tell them and I know it sounds stupid probably like a blithering idiot but… in my mind I tell them and they do it first time and I'm happy, they're happy and the whole world's happy, so…

It doesn’t sound stupid to me. You see me sitting here like this because I'm exactly like that.

Because in the hospital that was my only… because I was in a bad way, all my veins collapsed and everything.

That [points to the back of his hand] was the only vein left showing, and when they put the needle towards it, it actually moved, it moved out the way.

Yeah rolling veins, yeah.

I'd never heard of that before or seen it but it was like a foreign body inside me.

Yes

That’s how bad, how paranoid I got I suppose, it was the vein protecting itself.
 
 

Peter takes water tablets to reduce build-up of fluid in his heart and lungs but if he takes too much it harms his kidneys. His doctor suggested that Peter should vary the dose according to how he feels.

Peter takes water tablets to reduce build-up of fluid in his heart and lungs but if he takes too much it harms his kidneys. His doctor suggested that Peter should vary the dose according to how he feels.

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So have there been any other ways in which you’ve been affected by the medication?

Only by the- well, only by the water tablets. Because they must be like- a very like a very powerful drug because if you take too much of them they can damage your kidneys. So it's a constant battle to try and get the levels right. I was up to four tablets a day, because I was getting a lot of water on my lungs. So you couldn’t sleep at night so you took more tablets. But four is quite a lot of tablets to take? But I'm now down- the doctor- my last appointment the doctor said, "Well you can play about with them yourself how you feel."

OK

"And if you feel you’ve got to take more then take more… but, obviously if you can take less it's better for your kidneys," so, I've cut down to two and a half tablets a day now. …And at the moment, for the last couple of weeks I have been feeling really good. Apart from I still get very breathless.

Yeah

Yeah.
 
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