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Alport Syndrome

Alport Syndrome and kidney dialysis

Dialysis was commonly talked about by those people with Alport Syndrome who had experienced kidney failure. Dialysis is usually started when a person’s Glomerular Filtration Rate (GFR) is less than 10-15 (less than 10 is also called Chronic Kidney Disease stage 5). Patrick described dialysis as “doing the work a kidney should do for you”; cleaning the blood of toxins and removing excess fluid. Not everyone with Alport Syndrome spoke about dialysis though, and people like Jayne and Michelle only spoke about it in relation to their children (not themselves) and whether their children might need dialysis in the future. Deborah said she thought she may never need dialysis or that it will be a “very long, long time away” at least. Lucy felt that blood pressure medication could significantly delay kidney failure for her children. Patrick hoped to avoid dialysis completely by having a transplant when his kidneys failed. Diane’s partner Neil donated her a kidney so she “just missed” dialysis.
 

Professor Neil Turner explains the history and development of dialysis and transplantation.

Professor Neil Turner explains the history and development of dialysis and transplantation.

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So I think most, most people know a little bit about dialysis and transplantation, nowadays. They, they were both invented interestingly around about the same time, in the 1960s. So there are some people alive now with both, who've been on dialysis and had transplants for more than fifty years. It's, it's quite - quite an amazing medical success story. Interestingly, dialysis seems quite similar to treatments that were around in the 1960s, although peritoneal dialysis came along later. But it has improved a lot. So although it's haemodialysis, which is the one that washes your blood through a machine, it's a big burden on anybody. But many - particularly young people who don't have other serious illnesses, lead a very, a very good life on it. On the other hand, most people want a transplant. Because a transplant restores you completely to normal health. I guess sometimes people reckon they lead really good lives on dialysis and it's only when the transplant comes on that they suddenly discover they have much more energy. Transplantation has become much, much more successful in the last fifty years. Progressively so. So, most patients with Alport syndrome are transplanted now. And most of them do really well for a long time. I think the, the worry for a young person heading towards kidney failure is that they're often told that a transplant won't last forever. Which is often true. And they may need to experience dialysis and more than one transplant in a lifetime. So I guess that just makes it particularly important that they get a good transplant, and look after it well. But they do really well with transplants, and lead completely normal lives, essentially.
For those who had experienced kidney failure, two types of dialysis were offered: haemodialysis which is usually performed in a hospital and requires the person to be connected to a dialysis machine roughly three times a week for around 3-4 hours; and Peritoneal Dialysis (PD) which can be done at home connected to a machine (called an APD or Automated Peritoneal Dialysis) overnight or alternatively using manual bags of (dialysate) fluid four times during the day (often called CAPD or ‘bag exchanges’).
 

Professor Neil Turner explains the different types of dialysis treatment available.

Professor Neil Turner explains the different types of dialysis treatment available.

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So haemodialysis is this treatment which is the original type of dialysis, where it takes blood out of your circulation, puts it through a machine, puts it back into your body having filtered off a lot of the waste materials. It needs to be done usually at least three times a week. Probably takes at least four hours. Although interestingly, some people are deliberately doing much - either much longer treatments, or more frequent treatments, and that seems to make them feel better. Get them up to a better level of performance and, and health. So that, that treatment - as I say - it's been around for a long time, but it's been gradually refined. And many people have lived on dialysis for decades, if they need to do. The other kind of dialysis that came along a bit later is peritoneal dialysis, where you have a tube in your tummy, and you join it to bags of fluid that wash in and out of there, and do the same kind of job of removing waste materials but in a kind of more continuous gradual way than haemodialysis. There are different ways of doing this. In CAPD you put bags in there and change them, several times a day. Many people now have an overnight machine that automatically does the exchanges for them during the night. And peritoneal dialysis is a really good treatment for young people, or for people who want to travel, or for people who, for whom going to a renal unit three times a week to do dialysis is a, a burden. Which is actually almost everybody [laugh]. One of the difficulties with peritoneal dialysis is that it doesn't - it doesn't seem to give people decades of treatment in the same way as haemodialysis does. But it's a particularly good treatment for people who are heading towards a transplant, or between two treatments, and so on. And it's a treatment that many people with Alport syndrome would want to have at some time.
 

Alison explains what haemodialysis and peritoneal dialysis are and why PD worked best for her.

Alison explains what haemodialysis and peritoneal dialysis are and why PD worked best for her.

Age at interview: 33
Sex: Female
Age at diagnosis: 20
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So peritoneal dialysis allows the patient to be able to dialyse at home. Or wherever they want, as long as it's a clinical environment. The other option that I had was haemodialysis, where the patient has a fistula inserted in their arm and they have to go to hospital three times a week for four or five hours at a time. And they dialyse on a machine, which pumps the blood into the machine, cleanses the blood, and pumps it back into your body. And you're in a lot more of a restriction when you're on the haemodialysis, you've got fluid restriction. 

Whereas on peritoneal dialysis, you could drink as much as you wanted. Plus because I was able to do this at home, it allowed me to be able to still work full-time. Plus it - for going - you could still go on holiday when you were on dialysis, but if you were on haemodialysis you were limited to where you'd go. You'd have to go somewhere that had a hospital that would allow you go to in and dialyse. So, PD - the peritoneal - worked a lot better for me, because I could go anywhere. So it just meant a lot of organising between the hospital and your destination, to ensure all your supplies were there for your arrival. But going back to the explaining what it is. With peritoneal dialysis you have to dialyse four times a day every day. So you quickly got into a routine, and you dialysed in the morning before work. And that would take - takes about half an hour each time. And basically you have a bag of fluid which you would hang up onto a drip stand. And you connect the bag to your, your dialysis tube, which goes into your peritoneum. And you would drain that fluid into your peritoneum. And then you would leave it for minimum of two hours, maximum of eight. And then you would drain that out. And then once you've drained out, you drain another bag in. So you're repeating that process four times a day.
 

Dee explains how she made her mind up between haemodialysis or PD.

Dee explains how she made her mind up between haemodialysis or PD.

Age at interview: 51
Sex: Female
Age at diagnosis: 48
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They told me I did have an option of the two. Because if you go onto direct renal failure, obviously they have to put you straight onto haemodialysis, because you need to be treated there and then. But because I was coming towards it, I had the choice. And I preferred the peritoneal dialysis, because of the two I thought it was less invasive. I'd rather have a tube in my tummy than, you know, veins and blood - that felt more serious to me at the time. So I thought this was the gentler one. And it is the gentle one. Because you can be on this five plus years, and then go onto haemo. It just extends the life of your dialysis, really. And it is gentle on your body. Because haemodialysis can tire you out a lot. And I did a lot of reading up about that, and asking people as well. And they feel very tired after they've had a treatment. Whereas on peritoneal dialysis, it's lovely, it's great. It's just, it's so easy on you and everything, yeah.

My kidney nurse, she took us to meetings. And we had meetings at Kidney Foundation, and there was a few other people there that were on dialysis. So I got to ask them what they thought about it, and what have you. But people who are on haemodialysis will say to you "You should go on haemodialysis." And people on peritoneal say "You should go on peritoneal." So technically at the end really I made my own mind up, because there were pluses for each thing. And I just thought for myself. I didn't really want to go to hospital three times a week, I wanted to be in control. And I think that's what keeps positive, I'm in control of my treatment. It's like when I go to the hospital now for a check-up, and they go to touch my tube - I'm like "No, I'll - I'll do that. What do you want?" But it's my - I keep it clean, and I know my hands are clean. I know that, you know - whereas they might forget, and rub their eye and then touch my tube. And, you know, so. [name] of course, she's the kidney nurse, she knows not to do that. But generally at the hospital. But we're allowed to do that, like [name] says, "You look after your tube, that's your - you know - you responsibility."
All types of dialysis require an ‘access point’ on the body. For haemodialysis this is often a fistula (a special blood vessel created in the arm) or sometimes in an emergency, a neck line (where a catheter is inserted into a vein in the neck) which allows blood to be transferred to the dialysis machine and back into the body. Some people were not keen on the idea of a fistula. Karen described how it took around eight weeks for the fistula to mature (this is when the vein grows larger and stronger). 

For Peritoneal Dialysis a catheter is usually inserted into the abdomen to allow dialysis fluid to be pumped into the peritoneal cavity. A few people spoke about having needle phobias. Karen said she applies anaesthetic cream before each dialysis session and has had Cognitive Behavioural Therapy (CBT) – a type of talking therapy commonly used for anxiety. Debra said she had an “absolute fear of needles” having seen them in the house when her dad dialysed. People using Peritoneal Dialysis talked about having a nurse visit to check everything was ok or going into the dialysis unit every few weeks and they could call the kidney nurse or on call nurse 24 hours a day.

Sometimes, people said they didn’t have a choice between haemodialysis or PD because they needed dialysis very rapidly and there was little time. People spoke about being rushed onto dialysis and things happening quickly. Alison said it was a bit of a shock when her consultant phoned to say she needed to be booked in very soon to have an operation “to have a catheter inserted into your abdomen, to start you on dialysis”.
 

Steve was rushed into hospital with six percent kidney function.

Steve was rushed into hospital with six percent kidney function.

Age at interview: 37
Sex: Male
Age at diagnosis: 3
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I went to my local hospital straight away. I was put into their emergency assessment unit and shortly after being there they, they performed like a, an emergency surgery to put a line for dialysis into my chest which kind of went up round the neck and down into an artery somewhere near the heart so they could take blood and clean it and put it back in. So, I went upstairs straight away and I did that three times a week for seven or eight months. So, I was lucky again; I had a friend come forward straight away; I had a few people come forward including, including my wife.
 

The hospital wanted Richard Y to start dialysis much sooner than he expected.

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The hospital wanted Richard Y to start dialysis much sooner than he expected.

Age at interview: 37
Sex: Male
Age at diagnosis: 23
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And then I asked him if there's any tests that I need to do to get on there. I'd read in between my appointments that people did treadmill tests, heart tests. He said "You're fit and healthy apart from damaged kidneys." He just said "Lean forward, and stick your tongue out, and say 'ah'." And he got a little wooden lollipop stick, like you see in the old doctors, pushed my tongue down [laugh]. And as I pulled away, I said "What was that for?" He said "I can smell your breath, it's uraemic, so it smells like pee." He said "You really need to start dialysis as soon as possible." So on the - ooh, what day was it now? So that all started in October. About mid-November I went on the transplant list, like I said, in 2011. And end of November I was scheduled for surgery for dialysis access at the original hospital, not the transplant centre. And I had peritoneal access fitted. On a Monday, I think it was.

So I went to my Mum's. I got home, the next morning I had a phone call the hospital that fitted my dialysis access. They'd got my blood results back, and my levels of creatinine were so high - they were about two thousand - that they wanted me to start dialysis straight away. Normally, they'd leave it for a week or two, to try and heal up, to prevent hernias. But they said I had two options. Come in, lay in bed and start this dialysis process. Or have dialysis access fitted into my chest, for haemodialysis. So being a coward and all, I though a week in bed would be fantastic. So, just two days after coming out of hospital as well, I was back in the same place again. And that night, connected up to peritoneal dialysis machine and I started my first dialysis session. Not really knowing how serious it was. I don't know if that was that I didn't take it seriously, or the dialysis staff - the specialist PD nurses - didn't explain it well enough, or I was just not really paying attention, or I thought that something would just, I'd just get better. I'm not sure. And I think it being such a short process of test, test, test, test, join the transplant list, have access fitted, start dialysis, that I just think my mind just went 'I'm not having any of this, I'm gonna take a break and you can deal with this body, while we get ourselves sorted out'. So I spent about four or five days I think, - I definitely spent the weekend in there. And at the same time, they - they trained me, so I could be sent home and start the treatment again. So as soon as they felt I was competent. And also they'd had some good dialysis results from me, they were happy then to send me home, because you can recover better, feel more relaxed. 
 

Angela felt decisions about her dialysis were made very quickly and she didn’t really understand the implications of everything.

Angela felt decisions about her dialysis were made very quickly and she didn’t really understand the implications of everything.

Age at interview: 40
Sex: Female
Age at diagnosis: 10
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And I hadn't really looked into dialysis, and really understood that very much. And it was very sort of "Well now, because we're going to transplant you, you're now at the point where you need dialysis. So you need to make decisions quite quickly about what you want to do. In terms of what dialysis you want. And we need to book you an appointment to have the equipment put in, and you're having CAPD we need a fistula, or." And so that was all a bit like a bit of a surprise. And a rush at the time.

I think just because I hadn't really seen it going down that path before, I didn't really know what - I didn't actually really know what the implications were of everything. And despite the fact that I'm a lawyer and I ask lots of questions, I don't think I'd asked that many questions at hospital [laugh]. I think a lot of the time I always felt most people who work in the health profession want to help people, and regardless of the fact that you can't completely understand why they're doing things, they probably do have a reason, and that's probably one I've experienced… So you have to give them a bit of trust to get on with it. So I suppose I've largely been led by that, and - over the years. And sort of generally done what they advise. And that was happened with the dialysis, I think. I don't know, but she kind of said "Right, this is what we think you should do." And I just kind of like "Right okay, let's do that, then."
The experience of dialysis was described in different ways. Alan said he felt the experience was very automated and at first was “petrified of the machine”. Steve described it “like your body’s running a marathon while you’re sitting still”. Richard X said he felt it was a “good stop gap” and “much better than how I felt before dialysis” although, “a kidney transplant is the ultimate thing”. For Kevin it wasn’t a big shock, rather a “part of my normality” because his older brother went on dialysis before him. Alison felt she “took to it really well”. Dee described how she got a U-drain in her bedroom wall (a permanently installed urine/dialysate waste drainage system) which meant she didn’t need to use night drainage bags anymore.
 

Richard Y describes doing home dialysis for the first time.

Richard Y describes doing home dialysis for the first time.

Age at interview: 37
Sex: Male
Age at diagnosis: 23
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And how was the first session at home, doing it on your own?

Absolutely terrifying [laughing]. The first night that I set up at home, the dialysis nurse came home with me. I'd been setting my own machine up, and she watched at the hospital. And then when I got home, we set the machine up, we found a clean area, and I set the machine up all ready for when I wanted to connect later on. Could leave it for an hour or so. That was okay. The following night, myself and my partner got everything out, laid it all on the bed, and we just had it on a, a bedside table. It's that convenient, the machine. And we got like a drip stand for extra bags. And we got everything out ready. And we sat there, reading the instructions to each other. Done it half a dozen times, with staff watching me, but this time it was - you're on your own. There were numbers we were given if there was any problems, somebody would come out. But it was - I needed about ten hours for the machine to cycle through. And so I'd want to try and get on it before no later than ten o'clock. So I'd then be able to disconnect at a certain time, get to work. So we like started this at seven o'clock, and it took us about an hour just to make sure we were pressing the right buttons, the right connectors. There was a set procedure that I was given, about washing hands. So I'd wash my hands. I changed my taps so I could have little elbow things, so I wasn't switching taps off. And then as I walked out of the bathroom I got the light cord and switched the light off. And then it's go back and start again, because. I washed my hands, the proper procedure you see in the hospitals. And so for the first week doing it on our own, it was - it was scary. But I think not always being on the phone gave us the confidence that if something went wrong, or we missed a step we could go back and we wouldn't panic, we'd just - right, we know where we are, let's reset and start again. And we got into that. And then after a week or so, this thing that'd take us an hour got us down to ten minutes. And then I started to look logically at going to and from the bathroom, washing my hands and stuff. And I was like 'okay, can do different - move these steps around, and just wash my hands once, do everything, leave it, and then before I connect again, just wash up and then connect'. So, yeah. I gave that back to the nurses, and they just said "Okay, we're still not using that, but you carry on. Whatever's comfortable for you." During that time, my results for clearance on dialysis on that type weren't very good. I was retaining a lot of fluid. And I think that was partly my own fault as well, that I wasn't as strict with my fluid intake. So I suffered with my blood pressure. 
 

Paul and Christine explain how Paul had dialysis in between his three transplants.

Paul and Christine explain how Paul had dialysis in between his three transplants.

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Paul: From that point, I had approximately five years of dialysis at [name] hospital. And then I had a transplant on Christmas Eve, 1980. Christmas Eve 1980? Yes [laughing]. Which lasted five years. It was - it basically just rejected, at the end. The last year or so was all about rejection. Backwards and forwards to the hospital, with lots of steroids trying to keep it going, but it wasn't having it. So, that just went, and I went back onto dialysis. That was in 1985. And I went onto I think I went onto CAPD at that point. Did a couple of years CAPD, but kept on getting peritonitis. At that point I was living in a flat with my brother. Probably wasn't the cleanest of flats for two teenagers to have CAPD in.

Christine: [laughing]

Paul: And so I got peritonitis a few times. In the end they was just getting too bad and too painful, so I went back onto haemodialysis. And then - ah, it's gone. And then my Mum actually then dialysed me at home for a few years, had the machine. The room was already set up, because my brother had previously dialysed at home, for a few years. He'd had a transplant. But then I needed it [laughing]. So the room was turned back into a dialysis room, and I dialysed there for a few years. And then in January 1990?

I had my second transplant. And that lasted fourteen years. Again, it wasn't kind of rejection, it just ran out of steam. Basically what I was told, it just - you know - given up. It wasn't rejecting or anything, it'd just given up. So, back on dialysis again. And I was on dialysis for - I went on, back on dialysis in 2004, July. Just at the start of the school holidays. I remember [laughing]. And I was on dialysis for eleven years, until September 2015. And then I had my third transplant. And fifteen months later, touch wood, it's - it's been up and down, but it's working.

Again, yeah. I was in my - I was 20, to - what was it - 20, well 19 to 24. So I - yeah, I was feeling quite strong I think, before that, I was on dialysis. Again, I was still working. I was still doing things, wasn't I. I was quite active still then. I don't think I was - yeah, I don't think I was - I started going downhill at all dramatically on dialysis then. So I was still quite good.

How did you –

Paul: That's how, that's how I felt anyway.

I mean, again - I feel I do alright on dialysis. But when you actually kind of look back, or people look at you, you've got a completely different perspective on how you actually were on dialysis. I feel I was doing things, and getting on with things.

Christine: Yeah.

Paul: But I probably wasn't.

Christine: No, I think you did very well on dialysis. 

Paul: I think the fact I was at home, I was dialysing at home at that point. And I - we were living in our - we'd bought a house and we were living together at that point. But I was going back to my Mum's to dialyse, three times a week, in the same town. So I'd go back there, and home dialysis is a lot easier to manage than going backwards and forwards to the hospital. Because you can pick and choose your times, and.

Yeah, can you tell me a bit more about that? Yeah.

Paul: Maybe just - you can work all day, go home, set the machine up, and then you do a bit more into the night. Or you can sort of like - if you want a weekend away, a long weekend away, you can take the Friday off from work, dialyse Friday morning. And then come home late Monday, and dialyse late Monday, so –

Christine: It's more flexible, I suppose, more –

Paul: It's just more flexible, you can change things around a little bit more.

Christine: Yeah.

Paul: So, yeah. Yeah, it was - again, it was a case of adapting, just getting on with it.

Christine: And home comforts. Yeah, all the home comforts are around you, aren't they. 

Paul: Yeah. Yeah, the house. I had a nice buzzer that I could pull any time, and it would go in the kitchen, and my Mum would come running up [laughing]. "Just beans on toast, please" [laughing]. Which you could only a do a few times [laughing] before you didn't get anything. So yeah, home dialysis is definitely the better option.
 

Dee describes feeling a lot better when starting dialysis.

Dee describes feeling a lot better when starting dialysis.

Age at interview: 51
Sex: Female
Age at diagnosis: 48
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I found out late on, it was in the last few months of working. But no, I was tired. I started in the, in the two years before I finished, I started having time off where I just felt generally [sigh] - not, you know, I couldn't put my finger on what was wrong with me. No illness as such. But I was just generally exhausted, tired out. But my arms were sore. And people, after the toxins you have inside you and what have you. You know, it's not surprising really. In my first month of dialysis, I nearly cried with happiness, I felt to good. You know, it was like 'oh my gosh'. I mean, I was sleeping better, and - you know - because you'd lie down and you'd get sore and aching. Which, general aches and pains. And like because you've got all these toxins in your system, haven't you. You know, you're carrying all that waste around with you.

Oh, I felt fantastic. First month I was like 'oh my gosh'. You know, everything felt light again. And my head - because I don't know if you've ever been described to you - it's cotton wool brain. And you have this like - and you can't get past this cloudy mugginess. And you're trying to think about something, and the more you think about it, the further away it goes. And it was like that. And halfway through a conversation I'd be like 'what were I talking about?' You know, like I was drunk or something like that. You know, my daughter would say "Are you alright, Mum?" I'd be like "Oh, I just feel a bit - you know." And I used to think 'oh gosh, I hope I'm not getting dementia or something like that'. Because I'd forget, you know, just standard things. But it's because of all the, the rubbish that was in my system. Yeah.
People experienced various side effects from dialysis including insomnia, cramps, feeling light headed and dizzy, tiredness, blood clots and feeling sick (see 'Side effects from medication and treatment'). Karen said she lost three days a week because she felt terrible after dialysis. Karen took a while to get used to her fistula because they “kind of grow out of your skin so they look like snakes”. Others spoke about alarms sounding on their dialysis machine which alerts to the risk of blood pressure drops and kinks in the machine tubes. People spoke about fluid and diet restrictions particularly on haemodialysis. Alison said there were fewer restrictions on Peritoneal Dialysis. Karen said she was on a one Litre fluid restriction with both CAPD and haemodialysis.
 

Richard X was weighed every time he went for dialysis to see how much fluid he was carrying.

Richard X was weighed every time he went for dialysis to see how much fluid he was carrying.

Age at interview: 39
Sex: Male
Age at diagnosis: 9
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So all of those sort of things were horrible and things that you just have to get used to when you’re on dialysis and you get found out if you don’t stick to it if you drink too much over one weekend and you’ve got the two day break, they weigh you, the first thing they do is weigh you every time you go for dialysis to see how much fluid you’ve got cos you’re not you’re not weeing at all, so everything that you drink stays on you. So if you have too much then you get found out, the nurses shout at you, literally cos it does you harm you know, it can affect your heart if you’ve got too much fluid.

Yes so all of those things and the diet and everything else was horrible so actually the second time round I was probably a lot more, I was a lot more knowledgeable about what it would involve the actual operation but I was also a lot more grateful I knew I’d be a lot more grateful for having the transplant because part of it I suppose I was a bit older and I knew what it was about but secondly because I’d had such a horrible time for the previous year or two before that, well more actually since my kidney started failing.
 

Alan is weighed at his haemodialysis sessions and he is on a strict diet and low fluid intake.

Alan is weighed at his haemodialysis sessions and he is on a strict diet and low fluid intake.

Age at interview: 49
Sex: Male
Age at diagnosis: 19
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Yes, the haemodialysis is three four-hourly sessions a week. So obviously I have a fistula. Which, you know, is done to put the needles in for the machine. Which then cleans the blood through a filter. It after. When I come off dialysis, I feel a little bit sort of light-headed. But that stabilises, you know, within ten or fifteen minutes. Sometimes you feel rough when you come off, but it seems to stabilise the next day. You know? A lot, you know, still on strict diets and a low fluid intake because I don't pass urine now, at all. So whatever I drink - yeah. It adds to the weight. So prior to dialysis, I weigh myself. Then they know exactly how much fluid to take off.

Ah, right.

So, my dry weight's 97.5 kilos. So, I go in 99. They know to take that off, plus 500ml for the wash bag. They give me iron, in the machine. And I also have what they call a… injection, that's to boost my haemoglobin, the red cells count. Or the oxygen carrying count. You know? So yeah, it - I mean, I remember initially after the accident, and then being transferred from the hospital to the renal unit, how better I felt. And my friends said, "You look so much better." And this is, you know, after my kidney. And I thought, 'yeah'. So it couldn't have been working that well.
The environment in which they did their dialysis was important to some people. Some preferred to be in a hospital whilst others preferred to do dialysis in the comfort of their own home. Karen described how she liked her renal unit because of the same staff who knew her veins. She said she took earplugs, an eye-mask and tried to sleep during dialysis. Karen said that the hospital brought around food like a sandwich and there were blankets to keep warm and a TV. Paul said that when he and Christine had children, he preferred to do haemodialysis in a hospital because “I didn't want it impacting on the family at all. I wanted to go away, do it, come back”. Dee said she preferred doing dialysis at home because then she felt more in control of her treatment. She said that some people did “shared care” where you could manage aspects of your own dialysis. People spoke about having to get into a routine with home dialysis and being scrupulously clean. Alison switched from a home machine (APD) to manual bag exchanges as the machine made alarm noises and she was a light sleeper.
 

Angela remembers the alarm on her home dialysis machine going off and her husband ‘poking’ her.

Angela remembers the alarm on her home dialysis machine going off and her husband ‘poking’ her.

Age at interview: 40
Sex: Female
Age at diagnosis: 10
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Seems like quite a long time ago now. Like ten years plus, but. I think life to begin with, like everything, it was - everything new, it seems a bit scary and there's lots to do. I mean, it was just quite fiddly and complex in those days, certainly in terms of setting it up. And you had a like a tube that was in your stomach, and you had to like connect, and you had to be very, very scrupulous about cleanliness, because any germs would. And my husband mentioned the other day - we were talking about it, can't remember why - that he remembers because they used to have the, it was like basically a line that glucose came into your stomach and out, and it basically cleansed your blood that way rather than. I remember him saying that he didn't sleep much because, you know [laughing], it was like a, it was like a tube with like sort of liquid in it. And so if you rolled and lay on the tube, you'd obviously be stopping it working. So they had this alarm that went off. And he says he remembers in those days that he'd be woken up all the time by this alarm [laughing]. And he'd be like poking me.

[Laughing]

And have to roll over to get off it. I remember the fact that it was really, really annoying if you wanted to go to the loo in the night.

Because you had to like disconnect yourself. And then you had to reconnect yourself back up, and obviously by the time you'd kind of woken up, it wasn't like just. So I do remember thinking 'oh, I need the loo but I can't be bothered to go through all of that'. And then I do remember in the mornings, sometimes feeling a bit sick and unsettled.
 

Mariam remembers doing home dialysis in her bedroom and her sisters keeping her company.

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Mariam remembers doing home dialysis in her bedroom and her sisters keeping her company.

Age at interview: 21
Sex: Female
Age at diagnosis: 13
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I don't remember how many times I had to go in. But I think it was - I don't know. Almost half a week, I think. Anyway. I also remember that we got to bring one of the dialysis machines home, and use that. So basically I had like two - I had to use two machines, but one at home and one at the hospital. And basically I would be attached to the machine at home every night. So I remember exactly around seven, they would start attaching me to the machine. And I spent like the rest of the night in my room. Just, you know, doing drawings or watching the TV upstairs. I didn't actually have a TV until they bought it.

And also like I remember like all my sisters were with me upstairs. Because I couldn't come downstairs. Yeah. I remember a funny bit. Every time I needed the toilet, they would - they would all drag the machine [laugh] with me, to the toilet. Because I couldn't actually reach, so. So, but I remember during the day I would have to go to the hospital and get attached to another machine, which was to clean out my bloods. And I can't remember what the other one at home does, but I think that was supposed to help the kidney work. I was only using those machines for, not long actually.

Right.

I can't remember. It was definitely longer than two years, I think. Well I think my Mum said it was only for like sort of months, I but I can't remember. And then they found a donor for me. Yeah. And. I remember when I first heard that, that I had a kidney. It was like I think seven in the morning, I was getting ready for school. And then we got a call, and my Mum answered it. 
 

Cynthia did home dialysis in a Portakabin at home for fifteen years and then switched to CAPD.

Cynthia did home dialysis in a Portakabin at home for fifteen years and then switched to CAPD.

Age at interview: 65
Sex: Female
Age at diagnosis: 21
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Oh. Well, I hated dialysis. I really hated it. I always felt very stressed on it. Couldn't wait to get off, really. And I worried about the cramp we used to get. Yeah. And I had a machine at home that was in a Portakabin outside. 

Oh.

We had a farm on the fen, the fens in [county]. And I had this Portakabin, my kidney machine was in the Portakabin outside the bungalow we had. Yeah. And my husband worked a long day on the farm, and then he used to - he was trained as my nurse.

Yeah.

And helped me. Was quite stressful, really. Yeah. 

Yeah, it was like a little hospital ward. Yeah. Nowadays the kidneys are tiny, they're like little torches. But this was huge. And we used to put membranes in between boards. ‘Kiln kidneys’, they were called, I think. And we had to build them. So it was quite a complicated thing years ago.

Yes, that was home dialysis. And then I went onto CAPD.

Ah.

Which is the bag, bag method. And I loved it. 

Okay.

Yeah, because no more needles. And I would do bag exchanges, four a day. And I would just fit them around my life. I mean, you know, I would - do exchanges in the car park. Put the bag on top of the car, and it would drain out, down on the floor, a clean bag.

You know? And I loved it. And, I was on that for five years. 
People spoke about travelling, holidays and hobbies and fitting dialysis around their lives. Alison said she went on holiday to Turkey and had special pouches to cover her exit site, but once when she went swimming it came off.
 

Kevin used to go rock climbing with friends during dialysis and was glad they weren’t ‘overly sympathetic’.

Kevin used to go rock climbing with friends during dialysis and was glad they weren’t ‘overly sympathetic’.

Age at interview: 42
Sex: Male
Age at diagnosis: 6
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I tried to do different things. I mean, I would - I would - When I look back, I was still trying to do some activities. So I used to go - I was still rock-climbing [laughing]. You know - mental, when I think about it, but. I'd taken up rock-climbing with some friends of mine in my early twenties. And I was determined not to stop. So I couldn't, I couldn't forward-plan, so I had a couple of friends who would go rock-climbing. I'd aim to go with them. Sometimes I could, sometimes I couldn't, depended how I felt. But when I look back, I was really grateful, because my friends weren't overly sympathetic. My friends would just take the mickey. Which was far better than having lots of hand-wringing and people, you know, overly sympathetic. So yeah, so my friends would just rib me about it. I remember [laugh], I remember once I'd go halfway up a cliff face, I felt nauseous. My friends were just laughing. It was like, "Oh, here he goes again." Which was exactly what I needed. Because I just needed people to be normal. And yeah, you don't want - well, I didn't want people being overly concerned or, you know, worrying about me. I just wanted my normal life. 

And so what I'd do would be, I would dialyse before we set off. I'd tape all my catheter up, to make sure it was pretty stable. And then - we'd go rock-climbing quite locally. We wouldn't go too far. And if we were gonna go out for the day, I'd just take a, like a dialysis fluid with me, and then stick it on the roof of the car. I've never told my nurse this, because she would have freaked. But just stick the dialysis bag on the top of the car. Dialyse cold. Usually you warm dialysis fluid up, so it's like body temperature before you put it in. But it's cold when you put it in and you haven't warmed it up, you do know it. But it was that, or stay at home. So I wasn't gonna stay at home. So yeah, just dialyse in the car, and then go and do some more climbing, and then go home.
 

Paul and Christine said it was nerve-wracking when Paul did dialysis abroad on their family holidays.

Paul and Christine said it was nerve-wracking when Paul did dialysis abroad on their family holidays.

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Christine: There is more now, but I'm saying at the beginning - you know - to be in that position is one thing. But then to try and do things like holidays abroad, family holidays abroad, etc., are then another humungous task to get up, and. And very, nerve-wracking.

Paul: Very nerve-wracking.

Christine: You know? For all of us, to think about flying somewhere abroad and we've got to dialysis units where there's perhaps not been a lot of English spoken, and things. So, you know, when you think of something like a dialysis session. But we have got –

Paul: It's been fun. It's been good fun, some of it.

Christine: We've, we've done it. We've, we've meet some fabulous people, haven't we really, in the dialysis units abroad. 

Paul: The doctors and nurses, brilliant.

Christine: But it's been, you know, a bit scary at times. Not that anything has gone wrong. Nothing has ever gone wrong. But the whole experience, you sort of have to override it, and enjoy the holiday, you know?

Paul: I think it's just –

Emma: And you have to come off the transplant list.

Christine: Yeah, and you have to come off the transplant list while you're abroad.

Paul: Yeah.

Christine: Because obviously you can't get back.

Paul: But I mean, it's just the build-up to that first session, more than anything. Arriving, and wondering what the unit actually looks like, although you've seen some photographs of the inside, and things like that.

Christine: Mmm.

Paul: And what machines they've got, yeah. But to arrive, and who you're gonna be talking to, what they're gonna be like, and what's the unit gonna be like? Are they gonna be friendly? Can Christine come and sit with me for the first few sessions? And that sort of thing, you know? Just to have someone there, a bit of support. It is very nervous, very nerve-wracking. And particularly when we arrived in Italy, and we were walking towards the dialysis unit, and it's just this old run-down building with this old lady, Italian lady, leaning out the window, wasn't it, with her washing hanging out. And we're like 'oh no, what have we come to?' But we actually went round a corner, and it was quite a modern building, and it was –

Christine: [laughing] Had we got enough, had we got enough time to get back on a plane to England, for another dialysis, for the next dialysis session?

Paul: [laughing] But it was –

Christine: But it's always worked out.

Paul: Yeah. And once we got in there, they were - they were absolutely brilliant. And I mean, nothing against our dialysis units, but the Turkey ones were so much more efficient. Yeah. Yeah.
There were some issues around work and dialysis. Some people travelled as part of their job and continued to do so with a portable dialysis (APD) unit. Alison described being “in a bit of a flutter when our luggage went missing” at the airport on a work trip to Paris. Luckily it appeared an hour or so later. Other people like Sammy spoke about the flexibility of their employer allowing them to work around their dialysis sessions or having dialysis in the evenings after work. However, some people were unable to work when they did dialysis. Kevin and Alan were not able to work for periods of time due to tiredness and other symptoms.
 

Robin explains how he managed to travel for work while on dialysis.

Robin explains how he managed to travel for work while on dialysis.

Age at interview: 62
Sex: Male
Age at diagnosis: 26
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Well back in when I was 29 I wasn’t at that level so the issue [ha ha]. No it would have been. I spent the next 12 or 13 years with a transplant, one transplant. So I was only out of action effectively for about 18 months with dialysis so another 13/14 years I was back in the game so to speak. So it wasn’t an issue so I was, I was travelling around and the global bank it wasn’t so much of an issue. Went all over the place and, you know, from personal life, home life it meant we could do all the things that families do as I said. And then the form of dialysis that I went back on to which is peritoneum dialysis through the peritoneum meant that with a little bit of organisation I could travel. So again I have recollections. I think it’s still the case they have a, an overnight, what they call APD machine which is about the size of a small suitcase and so the way that you work it. The way that I certainly worked it is I had to go to New York quite regularly, about once a month and to be honest two or three other places. It was relatively easy then even those years ago, 20 years ago, and certainly now you have, the supplies you need delivered locally to your office or to the hotel where you are going to be. You take the machine on the plane with you. It goes in the hold. So I was about a week or two in New York and just again normal working day, working dinner whatever it would be and then use the peritoneal dialysis overnight when you’re asleep. So again it’s, it’s. You, you tailor it. You can’t be out for midnight. You’ve got to do your 8-hours or whatever but you, you. You know you have an early night you can dialyse overnight while you’re away on business and providing it’s not, you know, the back end of nowhere, is that you know it’s a relatively, you know, well developed centre as those the sort of places I went to. But you could do it. And I did.

So how did you find out about that machine? It’s called AP?

APD. 

APD.

It’s Automated Peritoneal Dialysis. I, the hospital would have introduced me to it and I’m. I’m glad to say at the time I started using it again it was a relatively new technique. I’m going back 20 years now, yeah probably. And so there weren’t that many of these things around but the fact that I was working fulltime and it would have benefitted me to be able to keep my job going fully, you know I was fortunate enough to get one of these things. So it doesn’t do a lot for your stress levels if you’re two or three thousand miles away and the machine packs up which can happen or you know, it doesn’t come off the conveyor belt at the airport, these sorts of things can give you a little bit of a heeby jeebies but it, on the whole very successful.
 

Steve was able to work from home around his dialysis and transplantation.

Steve was able to work from home around his dialysis and transplantation.

Age at interview: 37
Sex: Male
Age at diagnosis: 3
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With the job that I do I normally I have to be in an office; normally I have to interact with people, well at least I did at the time, the general public. I was very, very lucky in that I'd just started a contract somewhere and it was the second day that I had the job that I was diagnosed and started hospital. So, I was a self-employed contractor at the time so, normally when… couldn’t work is they'd ask you to leave and they'd find somebody else to replace you. The place I was working for were very kind; they, they gave me a laptop and they said I'd be able to work from home. So I changed the nature of the job I was doing with them and worked from home for throughout the whole time. So it didn’t affect my work at all, through all of the dialysis and transplantation, I was working from home so that was really good. Socially it had a massive impact on my life. I moved a distance from where most of my friends and family are a number of years before I was diagnosed, and I would often go into London on a weekly basis, if not every other week, but I didn’t really have any energy for that at all – concentrate on driving and just kind of going out and about, it wasn’t really a realistic thing. It was, yeah it was tiring so.
People spoke about dialysis changing over the years. Debra remembers her Dad dialysing at home in the 1980s and the dialysis unit being a “monstrosity” taking up an entire room in the house. Michael X said that he and his wife Sal had one of the very earliest home kidney units where they “had to put together the cellophane sheets on a plastic sheet”. Karen said that a man in her renal unit who had been doing dialysis for thirty years described the first units as “the size of a wall”.
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