Age at interview: 51
Brief Outline: Martin had a diving accident in 1978, aged 18, and became tetraplegic. He has had a urethral catheter for about 10 years. Martin used a condom catheter at first and then a suprapubic for 8 months.
Background: Martin is single and lives with a full-time carer. Ethnic background/nationality: White British.
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Martin had a diving accident in 1978, aged 18, and became tetraplegic. He damaged his spinal cord and was paralysed from his shoulders down. When he was discharged from hospital, he said he was given very little advice and no rehabilitation, though he felt that healthcare had probably improved since then. His Mum cared for him at first and he has had a carer for the last 15 years or so.
Martin spent 26 months in hospital and had 14 cardiac arrests during this time. He spent 6 months in intensive care, before being transferred to a third hospital and then to a fourth hospital with a specialist spinal unit. He stayed there for about a year and was then transferred to a local hospital, where he waited until a house was converted so that it would meet his needs.
At first, Martin used a condom catheter. This is a urinary incontinence device for men, which consists of a flexible sheath that fits over the penis just like a condom. The condom part is then attached to a tube that drains the urine into a drainage bag. The condom catheter is easy to use as it is simply rolled onto the penis. It is then attached to the penis using one of several methods. Sometimes this external catheter is secured using double-sided adhesive. Another way of securing the condom catheter to the penis is with a jockey-type strap or a foam strap.
In 1985, Martin was fitted with a suprapubic catheter, which he had for about 8 months. Martin said, ‘It smelled and just didn’t work as well as I thought it did and so I gave it 8 months and then took it out and put the old one in.’ The previous catheter had been a urethral catheter, which Martin has now had for about 10 years.
Martin was disappointed with aspects of his care and said that some of the district nurses didn’t seem to know how to put his catheter in. When he advised them, he said they didn’t listen and, on a few occasions, he ended up in hospital because the catheter had not been inserted properly and this had caused problems. He felt it was important for district nurses to listen to patients.
Martin drinks 3 or 4 litres of fluid a day. When he first started using a catheter, he rarely had any blockages. On one occasion, he had no blockages for about 15 months. Martin said that 2011 was ‘a bad year’ because he had 3 or 4 infections, whereas usually he gets one a year.
Martin has found lemon juice drinks helpful. He now has his catheter changed every 4 or 5 months by a district nurse and bag changes every week by his carer. He has 5 or 6 carers who care for him at different times during the day, and some who stay for a few days at a time.
Martin had a urethral catheter and then tried a suprapubic for about 8 months. He went back to a...
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Well first of all it was a condom catheter. Well it’s not a catheter is it, it’s a condom, Conveen.
They weren’t even around then, but these were made up by the hospital and you bought all the bits. And then after time, like I said, the catheter, it’s always been the same 16 and long term. In the last ten, twelve years I’ve gone over to Bard Hydro-elastic I think, size 16, 10ml balloon. And they seem very good. I’m allergic to latex I found, the coating. I go into autonomic dysreflexia, do you know about that?
I go into dysreflexia and also I get loads of spasms, so that’s a no-no.
Is that a urethral catheter or suprapubic?
Urethral. I did try a suprapubic for about eight months, and it never ever, I know it doesn’t heal up, but it smelled and just didn’t work as well as I thought what it did. So we gave it eight months and then took it out and put the old one in.
Martin rarely gets blockages since he started putting lemon juice in his drinks. He now drinks 3...
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I drink religiously three or four litres a day. A lot more water since I had this terrible kidney infection. Now about ten years ago, eight/ten years ago, my catheters were, first of all when I had my [spinal cord] injury, my catheters weren’t getting blocked up. I could, I think the longest catheter I had in was for eleven weeks.
Which, you know, is okay. If it’s not doing any harm, it’ll be alright. And then they started getting blocked up and I think that was due to the bone, when you sit down and it’s, what is it, osteoporosis is it? That kind of thing, and I was getting certain infections. And I’d read in the SI [spinal injury] magazine, in various places, that people that are on a high citric drink were getting good results and the catheter wasn’t blocked up. But they never actually said go and buy a load of vegetables, lemons and grapefruits, oranges, and mush them all up, so it wasn’t very helpful.
Anyway, a couple of years I came up with a very simple format, 100ml of pure lemon juice that we get a bunch of lemons. Bunch of lemons? Load of lemons, and then we do them in the machine, get all the pith and all that kind of meaty bits out, no pips, and then we put 100ml for every 900ml of liquid.
Water or, I don’t know, use a little bit of lemon to make it a little bit sweeter, otherwise it is very sour. But once in the morning and once at night. First thing in the morning, last thing at night, and my catheters have gone to I think the longest now is fifteen weeks.
Martin mixes 100ml of pure lemon juice with 900ml of water. He drinks this morning and night. He...
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I’d read in the SI [spinal injury] magazine, in various places, that people that are on a high citric drink were getting good results and the catheter wasn’t blocked up. But they never actually said go and buy a load of vegetables, lemons and grapefruits, oranges, and mush them all up, so it wasn’t very helpful.
Anyway a couple of years, I came up with a very simple format, 100ml of pure lemon juice that we get a bunch of lemons. Load of lemons, and then we do them in the machine, get all the pith and all the, you know all that kind of meaty bits out, no pips. And then we put 100ml for every 900ml of liquid.
Water or, I don’t know, use a little bit of lemonade to make it a little bit sweeter, otherwise it is very sour. But once in the morning and once at night. First thing in the morning, last thing at night, and my catheters have gone to, I think the longest now is fifteen weeks.
It dramatically just changed, just like that.
Martin was upset because the district nurse didn’t listen to him. The nurse had blown up the...
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The right way to put my catheter in, this is only for me, it might be different for other people, is to put the catheter right in up to that V and then, over a day or so, it gently slides out and that’s perfect.
And I’ve had three incidences in the last fifteen, twenty years, when the nurse has put the catheter in, and I’ve said to them because I’m very, very adamant of what, because it works, its works for me and I know the consequences. And as I say, this only happened beginning of November with one nurse. I said, “Look, that catheter’s not in right.” She goes, “Don’t tell me what to do.” This is it, this is what she said, “Don’t tell me, I’ve been, I don’t like putting catheters in, but I know what I’m doing.”
I said, “You don’t know what you’re doing. Make notes on your diary because that catheter isn’t in for me.” And she left it out eight inches. And I said, “That’s going to give me a problem.” She goes, “Look, I know what I’m doing,” end of matter. And I was really cheesed off as you can imagine. I wasn’t very well.
So that was bleeding in the night, so what she’d obviously done, I don’t know how much you know, but my urethra’s quite long by now. So she’d blown the balloon up in the urethra and that was where the blood was coming from. None in the urine, so she’d damaged my urethra, no blood or traces at all in the urine. So you could tell and then I was really ill, probably one of the illest I’ve ever been. I got up, because we phoned the nurses out to come and push it in further, which helps me. And they wouldn’t come out.
Right, the district nurse?
Yeah, absolutely. So I struggled to get up, really struggled. I was ill, my blood pressure was 200 over 160, you know that’s high.
Martin said that an inexperienced nurse should listen to a patient who has learnt from experience.
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What message would you want to give to district nurses?
Listen to the patient, as long as he’s got experience. If he’s just come out of hospital three weeks ago and he says, “Oh they used to do it that way,” at least listen to him. But these, no, I had an accident thirty three years ago, and these are nurses, some of them have been coming in to me, that one that doesn’t like putting catheters in, fifteen years, and she just completely blanked me. And I’m not being funny but I know my stuff. I like to think and you know you only have to speak to my nurse and I think she would vouch for me; I pretty well know my stuff, and if I don’t I’d be the first onto her gently to say, “What do you think of this?” And she’ll give me some good ideas and try and sort it out.
And in terms of good district nursing or good nurses…
Good district nurses are the ones that always say, “How can I help you today?” “What can I do for you?” Not, “This is what I’m gonna do for you.” And I say, “Well, I don’t think that’s gonna work today because…” blah, blah, blah. And they start arguing with you or you know. You know it’s just a discussion isn’t it? You want to find out what’s best for me, not for them, they’re doing a job. I’m sorry but they are.