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Long term health conditions (young people)

Surgery and hospital treatments

Many of the young people with long-term conditions that we talked to had stayed in hospital for specific treatments or surgery. When there was a crisis in their health, some had been admitted to hospital as an emergency. Some of the young people have to get treated at hospital on a regular basis which meant missing out on school or time with friends and family. People talked about how their daily life is disrupted on these occasions and some said that they will do anything to avoid having to stay in hospital for treatment.

For people with kidney disease, dialysis can be vital. A teenager who had to spend a lot of time in hospital for dialysis questioned whether the hospital was the best place for this treatment. His mother had been trained to help him with his dialysis at home and he was hoping to be able to have a special room built to make this possible.

 

Was alarmed when she was told that she would have to have dialysis but found the nurses helpful...

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Age at interview: 18
Sex: Female
Age at diagnosis: 13
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Okay. When you say you went down hill, what do you mean?

All of a sudden my blood levels were going very high, my creatonin jumped high, and they found a lot more blood and protein in my urine which showed that my kidney was letting a lot out which it shouldn't have been. I then had another renal biopsy, and that showed that in my kidney I had lots of, to start off with there was lots of little holes, but they had now gradually got bigger, so I was losing a lot more of the stuff that my body needed, I was also holding a lot of extra fluid all over my body, I was very puffy at that time. They let me go away to monitor me, I went on holiday for a week but couldn't enjoy it because I was, by now I looked about nine months pregnant, and to get up and walk around was very difficult and painful for me at that time. So I was, half way through the holiday I had to go back to the hospital, I was put on a drip to try and make me get rid of all the extra fluid, but to start off with that worked really well, but then it just stopped working. My body didn't want to cooperate, so about a week after that I was told that even though that wasn't working, I was alright, and because my main worry was being on dialysis, I was told that I wouldn't be on dialysis for ages. About a week later everything had gone down hill even more, and I was then told that I was going to have to go on dialysis, that week. Which was a big shock, it really upset me.

Why?

Because when I was younger, when I ever heard of you know dialysis, renal failure, the first thing I thought of was, 'Well I am going to die.' You know because at that age you don't think about transplant and all those different things. So when they explained it to me I was, it settled down a bit, but I was extremely scared about just the whole thought of sitting there having a machine do everything. So, I think later that week I had a central line fitted, and then I was put on dialysis for'I think it was, to start off with I was only on there for about three hours, because they wanted to get rid of the fluid, which was taking a long time to disappear. Eventually they managed to get it all off and I had been holding 14 litres of extra fluid on board. And then'

Okay. Tell me more about dialysis; you said that to start with they put you on for three hours?

Yeah. I think I had that, they started me three times a week for three hours to start off with. Once they'd got most of the fluid off, they then decided to try and put me for two times a week, but still for three hours. My body didn't really cope with that very well because the fluid then piled back on again, so I had to stay for three hours three times a week, and then after about two weeks of that they decided I needed a longer period of dialysis, so I was then put onto four hours three times a week, I was told that I would stay on that till I had a transplant. Which to me, that just became a routine, you know that was my life. I made some really good friends while I was there, and the nurses were really helpful, when I had down times they'd sit with me and you know they'd explain everything. Any questions I had, which I found really helpful, so did my Mum.

 

His dialysis treatment means that he spends four days of the week in hospital. A year ago he was...

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Age at interview: 16
Sex: Male
Age at diagnosis: 11
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James' We were told that some people in France I think it was were doing 6 days a week dialysis, two hours, 6 days a week. So you've still got your 12 hours a week but you didn't have to stay on the machine so long. And you know we were told, you know, everyone that's done it has said they have better energy levels and they feel better and, you know, they sleep better and they concentrate better. So I went 'Oh alright we could, we could give this a go'. And we did. Something like from March, May something like that to  the beginning of August.

Mother' End of August.

James' End of August was it, end of August then. Because we decided we had to stop then 'cause what they said was, 'We'll do six days and we're going to try and get you a room at home. So it, by September that year, last year. 'Cause they said if we can do that you can go back to school in September and not have. You can do school fulltime and you can go home and do dialysis afterwards or beforehand every day. And you can do whatever you want with the hours. It might be three or four hours, you know. The more dialysis you have the better. You can do whatever you want with the hours as long as you do at least two. And you know so we were like, 'Oh alright it's a good idea'. The room has still not been built and it's been a year.

See so what we decided in September was I was going to go to three days a week so I could have two days in school. I'd do. No I'd have three days in school 'cause I'd do Tuesday, Thursday, Saturday in the hospital and Monday, Wednesday and Friday in school. And we did that for a couple of weeks. But after one week my body felt that I wasn't having dialysis every day. 

And as soon as my body felt that I was sick all the time. I couldn't, I can't eat in the mornings anymore 'cause I just throw up. I can just about take my tablets and that makes me feel ill. I'm always tired. I have almost no energy levels at all. You know stairs. We have fourteen steps in this house and those tire me out just going from ground floor to first. So you know we decided, you know but it was even worse on three days 'cause I'm in four days now and on three days I was really bad.

And now how are you feeling?

James' Now it's like I'm always tired and I feel sick when I take my tablets and stuff but it's manageable. It's like, you know it's the next best thing. If you can't do six days you might as well do four, you know. And I still feel sick a lot and.

And how is your social life now compared to when you were doing six? I mean in terms of seeing your friends and.

James' Well I see my friends twice a week now rather than zero. You know.

Are your friends from school, mostly from school?

James' Yeah they all live round [name] so I don't get to see them outside of school.

People who had spent time in hospital often spoke highly of the staff - especially the nurses who were frequently described as nice, friendly and helpful (See 'Getting on with your healthcare team'). When she came round from anaesthetic after major surgery, one girl told us how reassuring it was to see several nurses around her bed. Doctors and nurses often seemed to have made an effort to talk to young people in ways they could understand and to break news gently and appropriately. Sometimes people could see through these tactics - for example a young man had noticed that his doctors tended not to give him any news if they could not also find some good news to tell as well. Instead they waited until there was a bit of good news and gave both together. Having realised this he assumed that if he wasn't being told anything, it must be bad.

Preparation is often needed for major medical procedures. A young person with kidney disease told us about the 'work-up' she and her mother had to go through in preparation for a kidney transplant.

 

Describes the 'work up' she and her donor (her mother) needed to have before her kidney transplant.

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Age at interview: 18
Sex: Female
Age at diagnosis: 13
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Okay, well while I was on dialysis they started the transplant work up. Which is to have my bloods done to check obviously my blood group and things, and my Mum had hers done to see if she was compatible with mine, which actually took quite a while to come back. It took about four or five weeks to get those results. We finally got them back and my Mum's was compatible with mine. And then she had to go up to London for some more tests, I think she spent about a day up there having all sorts of things, she had ECG's, loads of different scans, just to check that everything was okay with her. So, we then had to wait about two months to get all those results back, in the meantime I had to go up there for just appointments, with the consultant up there that I would've been under while I was up there. He went over all the different aspects of transplant like what would happen before, he went through the operation itself, and then explained what would happen afterwards, he didn't go into too much detail at that point. Once Mum had got her results back, it was all cleared, and we would go ahead, we then had another appointment together up there where they went into more detail about the operations. We then both met our surgeons, and they explained about the operation as well, and then it was just a case of waiting to see when they had a space to slot us in, altogether the process probably took about nine months, from beginning to end, to when we had the transplant.

A few of the young people we talked to had been taken to hospital when their illness reached a crisis point during which their parents had been warned that their child might not survive. This was obviously very frightening for everyone and some parents reacted angrily because they didn't believe that everything necessary was being done to save their child. One young man said that his mother had been really cross with a nurse who inadvertently caused him pain. A young man with muscular dystrophy described how his parents reacted when his hospital doctors suggested that there was nothing more to be done.

 

He was taken into hospital as an emergency, unable to breathe. His parents were told that it was...

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Age at interview: 18
Sex: Male
Age at diagnosis: 3
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Hassan' In the evening and then for after eating food I felt this weird. My heart was racing at the speed of 170 beats per minute and I felt weird. I thought I was about to fall or 'cause my fingers were shaking like they were shaking because I thought that, 'What's wrong with my heart? Why am, why is my fingers?'

Mother' Racing, palpitating.

Hassan' But I had palpitations and I my mum said you will be ok or whatever, you will be ok. Half an hour later I said, 'We have to go to the hospital now'. We went directly to the emergency room. We waited for a while. Then doctors came. They did some tests. Oh my, checked my wee. I had a bit of an infection in my, in my wee and I thought. They said, 'We'll keep you overnight'. So I said, 'Ok'. But I told them I have a scratch in my neck.

Mother' Throat.

Hassan' In my throat. 'Can you give me a medicine?' They said, they didn't give me a good medicine. And we slept, I slept there all night. In the morning I woke up and everything was ok and I had breakfast. I was still in the hospital and then when it was the afternoon I started feeling very weird and in the evening I couldn't eat food. Something was wrong. And my mother and brother and my carer went home. Dad said, 'I will stay with him.'

Mother' Within 24 hours the infection had gone down.

Hassan' Yes.

To your lungs?

Hassan' And I, my bronchials got stuck I couldn't breathe. My going down. My father turned me over because my father knew how to do therapy. So he did for two hours. I couldn't breathe because it was getting stuck and stuck again. It sounded as though I was crying out. Scared I said, 'I don't want to go now.' 'Son nothing will happen to you', my dad said. 'I'm here.' And then two hours later they did an X-ray. In the X-ray I had pneumonia, only half of my lung was open, one. And mother came. She got scared, 'What's, what happened? What's wrong with Hassan?' You said, 'Try to sleep'. And I couldn't sleep I was in so much pain. My mother and father were whispering that is 'What do we do now?' And I, in the night at 2 o'clock I couldn't really breathe now because I was gasping for air. From two to the afternoon of two, ten hours I was gasping for air. I said, 'When are you bringing me my mask?' 'When are you bringing it I can't breathe'. 'Can't breathe,' the doctor said. 'We can't bring it you're not in that Intensive Care. It's time for you to die.' He told my father and father, 'He has to go.' 
 
 

His father became angry with the doctors when told that there was nothing more they could do. He...

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Age at interview: 18
Sex: Male
Age at diagnosis: 3
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And my father was crying. He was so. He said that he would never let anything to happen to me. 'Don't let anything happen to him doctor. If you do anything to my son, if you don't give him any ventilation, any medicine I will kill every one of you. Well this is wrong. This, you don't decide this. You don't decide that when he has to die when a person has not. God decides that, not you. Well what, what if you were in this position doctor? What if your son was in this position? What could you do? Would you let him die? No you wouldn't. In God there's a greater power than you, is God. You can't decide when he has to die. He has to. Even if you're not honest with him. But I believe it's not his, his time.' My father said. Because you're just killing him. 

They were just killing me. You won't. You just said. Dad said, 'It's over. Why would you say that when somebody knows that it's not their time, it's not.' Because I knew because I knew I had more life. I had more. I could. They just condemned me to death. You can't condemn me to death. Only God can, he can, not you. And it's wrong.

Usually young people were able to have at least one of their parents around while they were in hospital. A girl whose mother decided to be her kidney donor had to cope without her mum immediately before and after her surgery - but she was reassured that her mum's operation had gone well before she went into surgery herself.

 

Her mother donated her own kidney for the transplant so was recovering in hospital and unable to...

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Age at interview: 18
Sex: Female
Age at diagnosis: 13
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Well when we got to London, I was obviously admitted, and I had dialysis the morning after I had been admitted, and then the next day I was to have the transplant. In the meantime my Mum had been admitted and she was at [name] hospital, and while I was in the children's [ward] at [hospital], that was quite hard not having my Mum there because she has been there you know for every other surgery that I've been through, and she found that hard as well not being there for me for when I went down. But I had my Auntie with me, and she was really helpful. I wasn't nervous at all about the operation; I was more worried about my Mum. So on the morning of the operation I spoke to her on the phone before she went down, and then I think she was down for about four hours, she went down at about eight, and I didn't go down till about one in the afternoon. I'd been given a pre-med to keep me calm, so the only thing I can really remember was I kept saying that I didn't want to go down until I knew that my Mum was back and safe, which I do remember them telling me so I was grateful for that. I had blood tests done that morning as well to check that my potassium and everything was safe for me to go to surgery. Then the next thing I knew I was up on the ward with a new kidney. With plenty of nurses and things around me making sure everything was alright, which was, it was very reassuring knowing that you had all those nurses there, checking that everything was going smoothly, and that I had my family there as well, apart from my Mum, and my stepdad who was over with my Mum at her hospital. But I think I spoke to my Mum about two hours after I came back from surgery, which was nice and she sent me a little, my sister had videoed her on her phone, so I got to see that which was quite amusing.

And when did you see your Mum again? How long after?

She was discharged two days after the surgery so she came straight over. And that was nice to see her.

Most people know that they are not able to eat or drink anything in the hours before surgery but it can also be several days before you can eat normally after surgery. When things do not go according to plan this can mean an extended period on a 'very boring' diet. One young man told us that his mum had promised him that he could spend a whole month eating nothing but burgers when he came out of hospital. His parents also bought him a DVD player and a hundred DVDs which he said compensated somewhat for the unpleasantness of his hospital treatment.

When people come round after surgery they can find that they are attached to various tubes and 'lines' into and from different parts of their bodies. Depending on the nature of the operation they may have catheters that collect their pee (so they don't have to use the lavatory), lines for antibiotics, IV drips with liquid food or medicines, pain control etc. One of the benefits of being in hospital is that specialists can look after your pain control and give you more powerful drugs than you would be able to use at home. 

 

After his kidney transplant surgery he had lots of tubes and lines attached to different parts of...

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Age at interview: 16
Sex: Male
Age at diagnosis: 11
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I think. After. I'm not sure about the days. This kidney transplant only lasted a week and it seemed a lot longer. It lasted 7 days and I'm thinking after three days 'cause when you come out, you come out with loads of lines everywhere. I got some, I got three in my neck and I had, what was it called, a drain in my, in my hip. That was just. Blood just goes out of that into this bottle on the floor and it. It's like a big cannula. The only difference is it hurts a lot more coming out. It's not, it does, it's not just a sticky. It's not actually stuck in. It's just this big tube. It's like that big, that thick and it's stuck into your side. And it's just stuck in with stitches. And they take the stitches off. That don't hurt. It's when they start tugging on it 'cause they just have to kind of pull and then they press on it 'til it's stopped bleeding. So after three days I got all these things removed and I was in a lot of pain, you know and. Movement became a lot easier after that though. 'Cause, 'cause the drain is in your hip it's, it's really hard to walk 'cause every time you walk you use your hip muscles and it's like  and then it was fine and then it was  and then it was fine again. It was, just hurt a lot. 

And then things started to go pear-shaped because they always look for a urine output, you see. My output wasn't urine. It was blood which also hurt a great deal. You see it's. Apparently they thought I was just being dramatic but then when they found out that it was actually blood that I was peeing they decided that, no that would hurt quite a bit and no he's not being dramatic which is what I was telling them all along, you know. This does hurt. 

Doctors and nurses have to keep a close eye on people after surgery in case they develop an infection - one young man described what happened when he got peritonitis after his surgery.

 

Had emergency surgery but then got an infection called peritonitis which made him feel very ill...

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Age at interview: 16
Sex: Male
Age at diagnosis: 11
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That's the problem I had, you see, 'cause I was overloaded with three days worth. I didn't have a water allowance like I do today. I just kind of drank however much I wanted. And it got to a point I think. My mum told me it got to a point where the doctors told her that I wasn't ready for the surgery but I, I would die without it. You know, it was one of those things. You would die with it and you'd probably die. No you'd die without it but you'd probably die with it. There is, there, there was a small chance of my survival apparently. But if they didn't do it I wouldn't be alive.

What surgery was this?

They put the PD in.

Explain what a PD is?

That's the, the peritoneal dialysis. It takes off fluid and puts it back on. It gives you, it gave me I think 700 mls at the end of the dialysis. It's, it's about a 12, 13 hour thing. I was on it continuous for a while. There was a complication with that though. It lasted a week but then I got something called peritonitis. It's just an infection in your peritoneum and that part of your stomach is somewhere here. Somewhere in your tummy there. I don't know where it is. And there are I think there are three stages 'cause I've been in all three. One where you don't know you have it and you're fine. Another when you feel really ill. You know like the room spins and you feel sick and you feel tired and you know, that kind of thing. And then comes the worst part, the pain. It really hurts. I've only been in that stage once and that's this, that first week with this  dialysis. And what had happened was which is apparently it was usual but no one had told us this. My body had attacked the, the tubes inside me and was trying to get rid of them. My basic bodily defences were trying to push it away and, and they used all my antibodies. You know, any, any, anything that would make them, make me remove this tube. And it got to the point where the pain was so bad. They didn't know what it was at first. The pain was so bad that I had  morphine. I had, I had morphine and that stuff just stays in me. And I went out, I went out for about half an hour and then it came back and then the morphine was useless. It wouldn't work anymore. No painkillers worked. So in the end they had to, to take out the, the peritoneal dialysis.

Different doctors can have different views about how people should be treated. A young woman with a rare skin condition (called morphea) that affects the appearance of her face told us that the specialist she saw in London took a completely different view to the doctors at her local hospital. As a result, she is having a series of operations to her nose, cheeks and forehead.

 

Until she was 13 she didn't think that plastic surgery would be possible. She found out that it...

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Age at interview: 16
Sex: Female
Age at diagnosis: 7
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Well the consultant that I went to see up in London he told me that there is something that we can do. And the, a plastic surgeon can change your nose and make it 'til it looks normal. But it didn't really. It was like. I didn't really believe him at first until I did see the plastic surgeon myself and he told me. 

Why?

Because my local hospital had told me that they couldn't do nothing. I honestly did think that there was nothing that they could do. But then when I spoke to the plastic surgeon up in London he told me that they could do something about it.

And before the operation, just before the operation do you remember how you felt?

It was mixed feelings 'cause I was feeling scared because of an operation but then I was feeling happy that it was, something was going to be done and that I'd. And then I was nervous 'cause I didn't know what the outcome was going to be like.

Can you tell me more about what the doctor or the plastic surgeon said to you?

That he was going to take some fat from some part of my body and put it into my nose, inject it into my nose to build it out. And he said that he was going to inject it into my forehead and my cheek and my nose to make it more evenly. But he did say that it, it would have reduced, that the fat would have gone, in like, in a certain amount of time. Like it has gone down a lot now. When I first came out of the operation it was like a really round, big thing [laugh]. But now it's gone down normally.
 
 

Describes the plastic surgery she has had, and will have, for her rare skin condition.

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Age at interview: 16
Sex: Female
Age at diagnosis: 7
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And what, and what did they do?

They took fat from my stomach through my bellybutton and injected it into the right side of the nose and my forehead and they built the cheekbone, like they put the fat in the cheek as well. And I was in hospital for a few days. 

And my nose was well really big and my sides came out really much as well but it's gone down a lot now. But I've got to have that operation repeated every so often because the fat goes. So I'm going up soon for another operation. I'm on the waiting list again to have that repeated. And later on once they've, are successful, once it's like they've succeeded in doing that. And they're happy with the size and shape that it's at. I'm going to have cartilage from my ear or my ribs placed into the nose to make the nostril, to shape the nostril and bridge the nose back up. And I'll either have. The guy that, they're going to build the bone back up in my forehead or put a metal plate inside.

So you will have several operations?

Yeah.

There can be considerable expenses associated with being in hospital or travelling to and from hospital for treatments - some people found that they could reclaim expenses or, depending on their income, receive benefits (see our practical matters resources for links to advice about benefits and expenses).

 

After a year of hospital treatment they found out that they could reclaim some expenses. She was...

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Age at interview: 18
Sex: Female
Age at diagnosis: 13
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Yeah, to start off with my Mum would take me up there three times a week, which used to cost quite a bit, in petrol. And then for the parking as well. We only got about, well we didn't even get about a quarter of that back, and by the time we'd been told that we were entitled to a bit of petrol money back, I'd already been on dialysis a year, so we'd lost a lot of money. Within the last, it must have been about the last three or four months of dialysis I was, well I did choose to have transport, which is where they would pick me up in a hospital car, they'd take me and then bring me home. But because I was the last one to go on my machine the hospital transport used to finish at four o'clock and I was on my machine until 6, so even though they would take me to hospital, my Mum still had to come and pick me up and bring me home. So we weren't really getting anywhere with that. But with other benefits, I wasn't able to get anything at that point, and we've tried for disability living allowance, I can't remember the other benefits we've tried for, but there was a lot of different ones we've tried for, and we just kept getting turned down for them.

What was the reason you were turned down?

It was just simple things like on the disability living allowance I was told I couldn't have it like because I was capable of going to the toilet myself, and just silly things like that that you know most people would be able to unless you know they had quite severe problems. And all the other ones I was told that I couldn't have them because apparently our monthly or weekly income was a decent amount, and that was the only reasons really.

Last reviewed July 2017.

Last updated April 2010.

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