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Alport Syndrome

Alport Syndrome- lifestyle, diet and exercise

People spoke about adopting a healthier lifestyle, particularly to prolong their kidney health, which often included making changes to their diets, and taking up sport and exercise. People adopted different changes depending on how they were affected by Alport Syndrome as well as how much knowledge and information they had been given (see Alport Syndrome: getting information). Some didn’t adopt any particular dietary changes: Jayne, who has no signs or symptoms, didn’t adopt a special diet but had been told generic advice to lead a healthy life and eat a healthy diet. Debra said she didn’t have any dietary restrictions, as her doctor had not given her any guidelines.
 

Professor Neil Turner says that having a healthy lifestyle and diet is important for people with kidney disease.

Professor Neil Turner says that having a healthy lifestyle and diet is important for people with kidney disease.

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Just in very broad principles, people with kidney disease, they're going to face a lifetime of having kidney disease. And some of the problems are going to be related to their kidneys, but we know that patients with kidney disease are also more likely to get heart disease. Perhaps because of the high blood pressure, and so on. So the general advice about eating healthy and living healthy is particularly important to patients with kidney disease. So early in kidney disease, the best advice is just to follow good healthy living and eating advice. There aren't any particular restrictions that you should be placing on kidney patients at that time, with just two exceptions. So, one is - and it's not really an exception - it's particularly important for kidney patients not to eat too much salt. Because it your kidney function isn't as good, your kidneys struggle to get rid of it, and it causes high blood pressure. But actually that's general advice to the population. It's maybe, it's maybe just more important that kidney patients should follow it. There's a lot of talk on the internet and everywhere about what you should do with protein. And in the past we used to recommend that people should restrict the amount of protein they eat, and eat low protein diets. We've actually gone off that quite a lot, because with modern treatments for blood pressure and ACE inhibitors, it looks like diet makes very little, if any - or low protein makes very little, if any, difference to what happens. And there's a real risk that people on very low protein diets actually end up malnourished and ill. So we've, we've moved away from that. On the other hand, you should definitely avoid very high protein intake. And that's not often a problem with normal diets in the UK. Maybe it's more of an issue in North America, where you're having moose steaks three times a day. But it does, it - it does arise with people going to the gym, and being told to take protein supplements for sport and so on. Patients with kidney disease should not do that. That's the only other specific bit of advice, beyond healthy living.
Most people spoke about being aware of their salt intake. Salt contains sodium chloride. Diets that are high in sodium can increase blood pressure levels, which put extra stress on the kidneys for people with Alport Syndrome. This can in turn make the heart work harder. Many people said they had cut down their salt intake. Patrick said that he doesn’t follow a particular diet but is careful with his salt as “it's about looking after your kidney essentially”.
 

Michael Y says that he got some dietary advice from PatientView and is cutting down his salt.

Michael Y says that he got some dietary advice from PatientView and is cutting down his salt.

Age at interview: 25
Sex: Male
Age at diagnosis: 24
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And once you click on that, it brings you to links that, like dietary information and things like that, which is useful, but I'm not at that stage of kidney disease yet, where I need to keep to a strict diet or anything yet. I've tried to cut a lot of salt out of my diet, as much as I can, so. Just as a precaution, sort of thing.

Yeah, have you made any - so you've made an adjustment, slight adjustment to your diet. Have you done anything else, is there any other impact that the diagnosis has made on your everyday life?

Not really. I just am conscious not to salt my food. And I don't really buy like the ready meals or anything like that, because of the high salt content. So they put the fear of god of salt into me [laugh]. But trying to eat a bit healthier. Although living as a student I get - quite difficult, so. As healthy as I can.
 

Lucy doesn’t follow a special diet but is careful about what she eats and drinks and has cut down her salt intake.

Lucy doesn’t follow a special diet but is careful about what she eats and drinks and has cut down her salt intake.

Age at interview: 38
Sex: Female
Age at diagnosis: 8
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Do you have like a special diet and – OK?

No, I have asked the question and – 

Just get a very kind of blasé, a blasé answer, something along -. I think I was, someone said to me once, "Well you need to not have too much salt but then of course you wouldn’t have too much salt would you?" and I was kind of like, "No, no course not," and then kind of thinking, 'Perhaps I should have pursued that slightly more.'

I mean I, I've got hypertension so I know that I need to be a bit careful with salt.

I've also got high cholesterol so I know that I need to be a little bit careful with generally what I eat.

And I think that, you know the advice generally is to eat a decent balanced diet and drink plenty of water and that’s easy enough.

And as far as [my son] is concerned I asked the question for him and they said keep the salt down as you would with any child, so yeah again nothing special.

Just, we've just got to treat him, treat all the children normally.
 

Donna thought last year she might have to go on dialysis. Since then she has become more conscious of eating healthily.

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Donna thought last year she might have to go on dialysis. Since then she has become more conscious of eating healthily.

Age at interview: 47
Sex: Female
Age at diagnosis: 3
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It is only since last year, when I ended up in hospital, and thought 'I'm gonna be on dialysis', that I suddenly - every time I have a blood test now, I get the results, I have a look at them, I study them. You know? Google what's good, what's bad. And , so I see - actually seeing a renal dietician next week, to give me more guidelines on where my bloods are at. So, what I should avoid, what's good. I've been eating a lot more fruit. But I've got high cholesterol as well. Again. And high blood pressure. So [laughing]. But doesn't matter how many iron - amount of iron tablets I take, I'm still anaemic, so I get tired a lot. But eating healthily, more healthily, does help relieve symptoms of tiredness. That's what I've found, anyway, I don't know if it's just mentally putting a positive spin on it, that 'oh yeah, I'm better now', you know? But-. Because being single - sorry, not having any children again, you haven't got to grow up with your - you know - Chinese takeaway tonight, kebab tomorrow night. You know? And I have been very naughty. But yeah, so probably the last six months, I've started eating more fruit. Protein. So I have - I make myself an egg bake once a week, where I have egg, broccoli, mushroom, onion, and some low fat cheese, for breakfast. Rather than before, I would have toast with lashings of butter. Obviously no good for the cholesterol [laughing]. Having soup for lunch, rather than sandwich or chips, or - you know - something naughty. And then a healthy meal that the majority of people would eat normally, but I was very lazy, very naive, and just ate what I wanted to. 
People on dialysis were advised by doctors and dietitians to follow a ‘renal diet’ which included reducing the amount they could drink (fluid restriction). However, Alison said this depended on whether someone was doing haemodialysis or peritoneal dialysis. Peritoneal dialysis was perceived to have fewer restrictions. Many said a renal diet was extremely hard to follow at first and several struggled with this because it included reducing or cutting out foods they liked, such as chocolate, dairy, mushrooms, tomatoes and bananas. Most people on dialysis said that this was because they had to avoid potassium and phosphorus-rich foods like these. Many people with kidney disease have to limit their intake of these elements. People discussed how they prepared vegetables by ‘boiling out’ the potassium.
 

Dee describes what she can and can’t eat on the renal diet and how she lowers the amount of potassium in potatoes by boiling them twice.

Dee describes what she can and can’t eat on the renal diet and how she lowers the amount of potassium in potatoes by boiling them twice.

Age at interview: 51
Sex: Female
Age at diagnosis: 48
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And what do you sort of follow?

Well your restrictions sort of grow with you, if you will. Because when you first start, if your kidney function is not too bad, you're a bit more versatile in what you can do. I've reached the stage now where my potassium has become a serious problem. And I could tell, because I was getting palpitations. It's like 'ooh gosh, that feels a bit funny'. And they did my potassium, and it's 6.1 - way too high, it should be 5.1. So that was like dangerously high. So they had to bring that down. So I had to avoid things like tomatoes, mushrooms, chocolate, coffee - gosh, the list goes on and on and on [laughing]. And then when you're on tomato restrictions, you can only eat so many potatoes because of potassium. So you can eat pasta. But you can't have a tomato sauce on pasta. You're advised to have creamy sauces. Well that's just calorie packs. So it's really - you've got to be so careful about what you eat and when.

Yeah, how does that affect your sort of everyday life?

At first, a lot. Because I was like 'flippin' heck'. I used to eat a lot of healthy stuff - salads, vegetables, tomato sauces on lots of things, baked potatoes. Can't have baked potatoes. You can have mashed potato, but you've got to boil your potatoes, strain them, put fresh water on and boil them again, then strain it off when they've finished and then mash them. Because they've got all the things out. Vegetables, you've got to cook them in water, drain the water off and then rinse them again to make sure all the potassium's leaked out. I used to steam everything, but you can't - you've got to boil it to within in an inch of its life [laughing]. But you adapt. You do. You know? So it's - you get round it. But I used to really - food used to be quite important to me, but it isn't any more. So, that's good. You know? It's - you do, you work yourself round it. But it's not a very healthy diet, the kidney diet. Because it's a lot of carbohydrates… sort of thing, but you've got to be careful - can't have too much fruit and too much everything else. And you have to have tablets with each meal. [Phosphate] binders, phosphate binders. Because you don't want a - you can have phosphorous overload. And that's as bad as potassium overload, that's bad for your heart. And when you've got kidney trouble the main thing you've got to do is look after your heart.
 

After starting dialysis Alison didn’t follow the dietitian’s advice about a new diet because she didn’t realise how important it would be.

After starting dialysis Alison didn’t follow the dietitian’s advice about a new diet because she didn’t realise how important it would be.

Age at interview: 33
Sex: Female
Age at diagnosis: 20
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But when you were on dialysis, you were on a restricted diet, like your potassium, need to watch your potassium intake, and. Which to be honest, I wasn't too good at. It was [laugh], yeah.

Yeah, can you explain a little bit more about that? What were the recommendations, and how did you find that?

So, yeah. Cut back on cheese and chocolate. No bananas, mushrooms. Potatoes. So if you were making potatoes, you'd be like - or if you, if you were - or baked potatoes, yeah. Cut back on baked potatoes. Because I love baked potatoes. But you're best to boil them, and then get rid of - parboil them, get rid of the water, and then boil them again. But I was… not really following the advice that the dietician gave me.

So you didn't follow it at all, or?

No, not really. No [laughing].

Was it because that was - it was so restrictive, or? How did you -

Again, like being told about the medication and how important, it was never really explained to me how important it is that you, you know. You could probably, I might have had a longer time before starting dialysis had I realised how important diet restrictions were. 
People said that fluid restrictions were sometimes the hardest aspect of having a particular diet on dialysis. Robin said he found only being able to drink about a pint /500ml each day very difficult. Paul said that when he was on holiday abroad, the heat meant that he sweated a lot and could drink more fluid, although his wife Christine felt that this was tricky to manage.
 

Richard X remembers being weighed during dialysis and said the nurses would tell him off if he drank more than the recommended amount of 300ml.

Richard X remembers being weighed during dialysis and said the nurses would tell him off if he drank more than the recommended amount of 300ml.

Age at interview: 39
Sex: Male
Age at diagnosis: 9
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Well the second time round, cos I was much more ill the second time round than before in the lead up to it cos the first time round they sort of caught it in time so I wasn’t really, it didn’t get to the point where I was really, really ill. The first the second time round they probably waited too long before I went on dialysis and then I ended up on, I kept going on dialysis on a really restrictive diet were you can’t have any potassium and you can’t have you can’t drink, I mean I could have I think 300 millilitres of fluid a day. 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.
People spoke about their weight and appetite changes while on dialysis. Some people talked about having no appetite and getting nausea and other side effects. A few people said they lost weight because of this. Karen said that on the days she does dialysis, she is really hungry but on the days in between she loses her appetite. She said that when she was doing home dialysis she could barely eat. Others said they struggled with their weight or worried about calorie intake when doing dialysis. Dee said that as she had to avoid tomato based sauces, and instead have creamy based sauces which she felt were “calorie packed”.
 

Sammy put on weight after getting the contraception injection and found it hard to lose this weight on dialysis.

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Sammy put on weight after getting the contraception injection and found it hard to lose this weight on dialysis.

Age at interview: 36
Sex: Female
Age at diagnosis: 17
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Like a glucose solution goes in, attracts all the poisons in your body, and then drains it out. And you did that four times a day. But with that, my renal diet, I had to change. I did need more protein. Because although it took all the poison, it took all the good stuff out as well that your body needed. And I was on a renal diet, which was quite hard to get used to, because I didn't really like cheese or anything. And, yeah. Fluid restriction. At the start, fluid restriction was okay, but it kind of like - you know - because it's like the less you wee, the less you can drink. My wee was getting really less and less. I wasn't outputting naturally. But it depends on your body weight, and how tall and things you are. But at one time, all of a sudden I remember my weight went up because my periods - my period cycle was all messed up. I couldn't stop bleeding. I used to be on my period like for forty, fifty days at a time.

Woah. Really?

Yeah. And then I used to have like a two week break, then they'd start up again. And I'd just get really –

Was that linked to the Alports at all, or?

I dunno. Dunno. Don't know what it was linked to, to be honest. Didn't really investigate. But when I seen the gynaecologist, I didn't realise at the time - she gave me this injection, and maybe a contraception injection. After that injection - she didn't tell me the symptoms, I put on weight all of a sudden.

And my weight shot up. And my doctor was like - and then my blood pressure shot up. And he was so angry, he was like why are you putting on weight? You know, your blood pressure's really not good, blah, blah, blah. And I did try my best to go on a diet but it's so hard going on, losing weight under renal dialysis because you're so restricted to food and you're so restricted, you know, your movement. I can just about manage to go to work, and come back. I still worked 'til three o'clock. And I remember when I used to come home - I couldn't walk home. And when back on dialysis, I just could not walk home. I just could not walk. And it was so upsetting, because at first I can walk forty minutes. But then I went on dialysis, I just couldn't even walk ten minutes, I'd be out of breath. 

So tired, yeah. 

Really. Because you're still anaemic as well, and so tired. I just - and it was so mentally draining, because I was thinking 'oh my god, I used to walk forty, fifty minutes a day, every single - you know - forty minutes in the morning, forty in the afternoon - what's wrong with me now?' I just really - really, really - no, because I enjoyed walking, and I just couldn't do it. And I just felt really upset. Like I can do work, I could go to work, I could still cook, clean and everything, even though it'd take me ages cleaning my house, because I used to take time, have a little bit of rest, then clean the bathroom.
Some people who hadn’t experienced any kidney failure or dialysis, said they drank a lot of water. However, there were mixed views on water intake. Dr Rachel Lennon, consultant paediatric nephrologist says with normal renal function, the advice is as for the general population; drink sufficient fluids to maintain good hydration. Michelle said she was keen for her son and daughter to drink enough at school to flush their kidneys out, and said they always had water bottles with them. On the other hand a few people like Donna said they limited their water intake as they thought this was better for their kidneys. However, it is only with late stage chronic kidney disease/dialysis that it is often necessary to restrict fluids.

The recommendations for alcohol consumption for those with Alport Syndrome are in line with national guidelines. However, Dr Lennon says that there is the additional consideration of medication and possible interactions with this. Regularly drinking alcohol above recommended limits can raise blood pressure over time (see Resources). Patrick thought it wasn’t a good idea to drink too much alcohol and Michelle said her daughter had the odd drink but knew that drinking too much wasn’t good for her kidneys. Others spoke about enjoying alcohol moderately. Angela said that dialysis worked well for her, and so she felt she was able to still have a drink containing alcohol within her fluid restriction. Others said that they didn’t mind about needing to avoid alcohol.
 

Frances says she’s been advised to stick to a couple of alcoholic drinks if she goes out. She thinks that spirits are less harmful for her than beer and cider.

Frances says she’s been advised to stick to a couple of alcoholic drinks if she goes out. She thinks that spirits are less harmful for her than beer and cider.

Age at interview: 35
Sex: Female
Age at diagnosis: 16
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But my kidney function is alright. And it's just a general kind of looking after myself. The doctor has said about drinking, they've told me that many a times over the years. I'm just like most people my age, I like to go out and have a drink at the weekend with my friends and my family and stuff. Have a couple of drinks, don't go mad, be careful what you drink. And if you're gonna drink, try and drink spirits because they're better for you, got less chemicals and things in it than beers and ciders and all this kind of stuff.

And did they say why that was?

They just said that it was purer. And it was, it was less harmful because there was less like additives and stuff. Because obviously when - you know - with your kidneys, you've got to watch your diet. I think, I don't know if it was like a potassium thing or sulphates or something that was in the alcohol. But I think spirits they said was a purer-. Yeah. It was always funny. It's funny. I always remember the funny things like saying "Don't have Oxo, don't have Bovril, don't have -." And I used to think why? It was just like gravy, or normal. But it's obviously for a reason. They've obviously looked at the salt content, probably - you know - too high for these things. You know. Even just one of the medications I take is saying like 'avoid grapefruit'. Which is random [laughing]. So you think 'why am I avoiding grapefruit?' But it's obviously because of the citric acid. For some reason it must counteract with something.
 

Richard X says that he’s stopped drinking alcohol completely after his transplant.

Richard X says that he’s stopped drinking alcohol completely after his transplant.

Age at interview: 39
Sex: Male
Age at diagnosis: 9
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They don’t really know sort of lifespan, I think a lot of it is, well a lot of it I think is down to how you look after yourself as well I do make a concerted effort now more than ever to make sure I’m doing the right thing in terms of trying to eat healthily although it’s not always, always possible for everyone. But also I’ve stopped drinking completely so I’ve stopped having alcohol just because I know hydration is such a big thing and although you can drink after a transplant I just, I’d rather minimise any risk of kidney failing again. And at some point in the future I’m sure it will, you know, there’s always reality of it which is, it’s not gonna last forever it’s my kidney is 68 so it’s my mum’s kidney, she’s 68 I think now so and it won’t last forever it’s it just depends how long, you know, if I can extend it for as long as possible then that’s what I’ll do.
A few spoke about the changes in dietary advice they had been given or had noticed changes in general attitudes over the years. Mary and Phillip said that many people these days have different dietary preferences but back when Anthony was a teenager this wasn’t commonplace, and so his diet seemed more restrictive and isolating. They felt that having a renal diet today seemed more socially acceptable.
 

When she was younger Frances found it hard to follow dietary advice because she felt nothing was wrong with her.

When she was younger Frances found it hard to follow dietary advice because she felt nothing was wrong with her.

Age at interview: 35
Sex: Female
Age at diagnosis: 16
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But certainly not now, because things have changed so much." There's all this medication they can - not just even medication, it's the fact that they realise what you've got at a very young age, they monitor it. You go to hospital, you get check-ups, they tell you - you know - to limit your salt intake, limit your, your water intake, try and lead a healthy lifestyle, try and do all these things to look after yourself, to put as less pressure on your kidneys as possible. Whereas when I was wee, we didn't know anything. You know, just ate and drank whatever you like, and then suddenly it was like "Oh no, don't do that." And I found it really hard when I was wee, because they saying "Oh, don't do this, don't drink this, don't do that." And I was like "No, I'm fine. You know? I don't have anything wrong with me. I've got obviously this gene, as they said, that I've got a faulty gene. Don't have any symptoms, but." 
 

Robin says that dietary advice for people on dialysis is more user-friendly today compared to 30 years ago.

Robin says that dietary advice for people on dialysis is more user-friendly today compared to 30 years ago.

Age at interview: 62
Sex: Male
Age at diagnosis: 26
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But again I can remember the dietary restrictions when I first started dialysing 30 years ago. They have a much better understanding and the quality of dialysis while it’s still not perfect, it’s a lot better. And the quality of the dietary expertise and support which is available now. It’s so much more developed to what it was 30 years ago. It’s far more tailored to your own particular requirements, what you do enjoy and what you don’t enjoy and what your own system can handle. I have, I have a high tolerance to potassium and some people say I can have a bit of chocolate every day if I want to, you know, without going mad. So that’s a little bit better but it’s far more tailored rather than “you shall not have this” which was the issue when I first started off. Now you can have a bit of this, have a bit less of that. It’s far more, you know, user friendly, yeah I guess user friendly advice and that’s helpful. But I wouldn’t, I wouldn’t play it down. It’s a significant issue and something you have to be very careful about. And because it doesn’t, it’s hidden damage. It’s not something that’s necessarily going to make you feel ill if you eat something you shouldn’t. It just damages you over the long term. 
Sport and exercise
Many people knew that healthy lifestyles involve sport or other forms of exercise. Some people changed from one sport to another after transplant to avoid contact sports like rugby, but overall a variety of different types of exercise were enjoyed including canoeing, football, korfball, hockey, going to the gym, walking, swimming and running. People did exercise for different reasons and at different stages in their lives. Sport was enjoyed purely for fun and relaxation, but other people started exercising because they knew it was good for their heart and kidneys. People were conscious of wanting to do more exercise but struggled to do it.
 

After being ill with hepatitis last year, Donna now takes diet and exercise much more seriously.

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After being ill with hepatitis last year, Donna now takes diet and exercise much more seriously.

Age at interview: 47
Sex: Female
Age at diagnosis: 3
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I'm finally taking it seriously. After what I went through last year with hepatitis, and then ending up back in hospital with kidney failure, thinking I was gonna be on dialysis. It, it's just made me finally take it seriously, and grow up a bit, I think. Right, you know, after what that renal nurse told me - exercise and diet is the best thing for me. That's it, that's what I've got to do. You know? The fear of being in hospital last year thinking I was gonna be on dialysis, and I couldn't do all of these things that I want to do, that's it. Now that I'm armed with knowledge, and I know what I've got to do.

Again, from what the renal nurse said, all I can say - the only thing you could do for yourself is fitness. Look after yourself, and eat well. You know? I've seen a difference in my , in myself, when I've been healthy, healthy and fit. How sort of slowly the numbers went down, with the Alports. And how quickly they can rapidly change when I've been on a poor diet, and - you know - not exercising. More so that you do have less energy, as well. You know? I wish - probably if we was having this conversation in a year's time, after I've had a year of being healthy and fit, fit again. You know, and I go and have some more blood tests. I wish I could say "Yeah, I'm fantastic - you know - everything's great." So you've have to chase me in a year's time and see how I'm doing, because as I say, I've only just literally - haven't gotten over all of last year's issues. I've literally just got the dust off my walking boots, and - and got the veggies, and the, the salads out again, and the, the fruit. So , I think that's - that is it, basically. Enjoy your life. You've got to enjoy it. But do, you know, do some exercise and eat healthily.
 

Jago and Wilf enjoy hockey, clay pigeon shooting, football and climbing all of which they do for fun.

Jago and Wilf enjoy hockey, clay pigeon shooting, football and climbing all of which they do for fun.

Age at interview: 17
Sex: Male
Age at diagnosis: 11
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Jago: One of my favourite sports is hockey. So that's, that's quite active. A lot of core muscle there, like being used to get low and hit the ball. And then I also like clay pigeon shooting, which isn't quite as active, I guess. I mean, just standing there holding a gun. But then me and Wilf both have pull-up bars so [laughing], so that's a little bit of exercise there as well. 

Wilf: I do football. So that's like your cardiovascular fitness. And I do climbing, because that's more your muscles and stuff. I've always done - I've always done football. Since like age 5. And then I started climbing about two years ago.

That's cool, yeah. And have you done that because of the Alports? Or do you think you'd do that anyway, or? 

Jago: I think I would do that anyway. It's - I love playing sport. It's just a really fun thing to do. The adrenalin. And it means that even if you get hurt, you don't feel it. It's just really fun. Hockey, rugby. Clay pigeon shooting. Football with some friends. Me and Wilf go climbing from time to time. Yeah, it's really fun.
Some sports were harder to do with symptoms of Alport Syndrome than others: football and other team sports played outside could be especially difficult for those with hearing loss. Patrick said that hearing aids “crackle” when it is windy which makes outdoor sports like rugby challenging. Anthony found playing football difficult because he couldn’t hear the other players on the pitch. 

A few people said that after their transplant they were very aware of their bodies and worried about injuries to their new kidney. Richard X had to give up rugby after his transplant, as he wasn’t allowed to do contact sports. He also put on a lot of weight due to the steroids. However, he is now training for duathlons and triathlons. Several people had taken up a new form or exercise after a kidney transplant, for example Alison had taken up running and also enjoys hill walking.

Before getting a transplant some people found they didn’t have enough energy for some forms of sport or exercise. Before her transplant Angela didn’t have enough energy for a full game of tennis. Others felt certain sports posed a specific risk to them; Alison was put off water sports on holiday because she had to cover her dialysis tube with a pouch which came off when she went swimming, and was concerned about getting peritonitis. 

As well as doing sport to improve their kidney health, some people said that sport was important for their well-being. Several people mentioned taking part in the Transplant Games which is a sporting event that takes place every year in a different UK city. Although Mariam wasn’t into sport anymore, when she was a teenager she was pleased to have won a bronze medal for swimming at the Transplant Games. Michael Y said his mum regularly took part in the Transplant Games and Richard X said he used to take part every year. Sport was important to many young people because it introduced them to new people and meant they could share experiences.
 

Steve connected with others who had gone through similar experiences through the Transplant Games and says they are like his ‘transplant family’.

Steve connected with others who had gone through similar experiences through the Transplant Games and says they are like his ‘transplant family’.

Age at interview: 37
Sex: Male
Age at diagnosis: 3
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And with the post-transplant I got involved in transplant sports, so I've met dozens of other transplant recipients who have all been through the same thing; some of got better stories, some have got worst stories you know, they're, it's a big shared experience and that I think is the best support that I've had you know. It's really useful to have that place to go to find someone you can talk to.

I mean people do things they couldn’t do before, or they wouldn’t have done before. I've -, Transplant Sport is an organisation that raises awareness of organ donation about the country and about the world in fact as well, and once a year there's a big sports event where anyone that’s had a transplant can take part and you know do sports. So, it's like a mini Olympics for people that have had transplants. So, it kind of -. Every hospital that’s got a transplant unit has got their own team and they can go there and compete and, yeah it's a really, really good, good time; it's over five days and yeah I've, you know I've learned to play volleyball, I started doing archery; just things that I do now for myself, for fun, outside of the events. But it's also, it's a nice way of, you know spending some time with people, I consider them like my transplant family at the hospital, you know we meet up outside of that; we do other events about the place and really it's driven me to kind of get involved a lot more than I would have done before with sports.
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