James - Interview 21

Age at interview: 16

Age at diagnosis: 11

Brief Outline: James has a renal condition called Senior Loken Syndrome and it means that his kidneys didn't develop as he grew older. James was diagnosed with his condition when he was eleven years old and since then he has spent much of his time on dialysis. Four times a week he goes to hospital to have dialysis and he is able to attend school two days a week. This condition affects both his kidneys and his eyes and James is now registered blind.

Background: James lives with his mother and two brothers. He attends an ordinary school which also has a unit for partially sighted and blind students. Ethnic background/nationality' White British.

More about me...

James is 16 years old and has a renal condition called Senior Loken Syndrome and it means that his kidneys didn't develop as he grew older. When he was about five years old the optician noted that there was something wrong with his day time vision as well as being long sighted. Over the years his eyes became less tolerant of light and the lenses in his glasses became darker. This is all part of the same syndrome which affects both his kidneys and his eyes and James is now registered blind.

At the age of eleven James got ill with what he thought was a bug and he had both vomiting and diarrhoea. No one thought much of it, but then his skin became yellow and was taken to hospital. After many tests he was eventually diagnosed with his kidney condition. James does not remember being told about his diagnosis by any consultant but he was put on dialysis straight away. 

Since diagnosis, James has spent much of his time on dialysis. He had a kidney transplant but unfortunately it failed. Four times a week he goes to his hospital to have dialysis and he is able to attend school two days a week. He attends an ordinary school which has a special unit for partially sighted and blind students. What James and his Mum would like is for him to have his dialysis treatment at home. It would means that James would be able to attend school full-time and to have more time for social life. He does not see much of his friends at the moment because of his long stays in hospital. A year ago he was promised home dialysis but nothing has happened yet.

James attended a boarding school for blind children for a few years. Initially he had a very supportive Head Teacher that made sure he was sent school work when he was away in hospital and he also had a nurse who came to school to put him on dialysis. Following a change of Head Teacher other things changed and James began to feel restricted on what he was able to do. At that time James started his dialysis in the evening, and it went on until the next morning lasting for a total of eleven hours. Other students weren't allowed to visit him in his room. Moreover, teachers were giving him a hard time for not completing some of his work. James became increasingly lonely and depressed and he thinks it was his lowest point since his diagnosis.  

James says his consultant does not like giving him bad news and he usually waits until he has something good to tell him as well. Doctors have told him that he will be in dialysis for another five to six years and that after that he would need to have another transplant.

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

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.

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

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. 

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

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.

He felt excluded and lonely when he was having treatment at boarding school and eventually became...

Then the housed decided. In Year 8 they decided to put me with four people. Three other people in a, in a room they decided, oh it was ok. And I just kept getting peritonitis after peritonitis, keep getting infections. I kept getting ill and I kept more absences. So what they decided was. They stuck me in a room on my own but it was a lot worse than the first time I was in a room on my own because now no one was allowed in my room when I was in there. So I was always on my own because no one else stayed in after school to do homework. They took it home with them but I stayed in after school because I did catch up lessons. So I was alone there and I was alone, I was alone in. The only time I saw my friends was at school in the actual lessons and everything got a bit much. 

So I figured if I'm in [name] and everyone else, the hospital, the nearest hospital is an hour away and that's in, that is with no traffic I could stop having my dialysis and, and die and no one could stop me. 

So I told my mum. I said, 'I'm not doing dialysis anymore'.

What made you decide that?

Well for about'

Why?

'well for about a year I'd seen none of my friends. All I was doing is work and for doing all this catch-up work and stuff I still get, I still got shouted at by every single teacher.

So you weren't happy?

Oh no I wasn't happy. In fact what I'd done was. This is very clever but I can actually block off all emotion when I can, when I, when I have to. Mostly it's when I'm scared of needles and stuff 'cause I'm terrified of those things. But I generally just shut it off and then there's only pain. And then you can just shout through that. It got to the point where I just wasn't bothered. You know, I figured what is the point in me doing all this work when all I do is get shouted at, you know. 

So I told my mum I was quitting. She was up that night, picked me up. And I think that was at the beginning of Year 9. Was that 2000 and, or was that in the middle of Year 9? No that was in the middle of Year 9 in 2005. And I went to. I came home and I got better. I got to see some people that I knew and.

Were you telling anybody?

No I didn't want to worry anyone.

So you were going through these on your own?

Yes.

Ok. Why?

Which is apparently what drove me to suicide, you know, or something. 

He is not allowed to do any contact sports or go swimming. Under the supervision of his PE...

Oh ok. I'm not allowed to do any kind of contact sport 'cause I have these tubes in my chest and if they get lodged, if they get torn out then that's my heart gone as well. So I'd bleed to death. So it's. Stuff like football, rugby, you know. Pretty much, yes it's almost any sport I can't do because it will involve tackling. And in each tackle there could be a miss and something could go wrong.

Can you do swimming?

No 'cause the, my tubes aren't allowed to get wet because when, when the tubes get wet you could get infection and that would go straight to my heart.

Ok. So most sports are out then?

Yeah I do fitness training.

Ok.

I only do that when I'm at the school 'cause I'm not supposed to exercise that much. I only exercise when I've actually put on weight. So I'm still waiting. But yeah I do, I do fitness training and I lift weights and stuff.

Under the supervision of?

Yeah a P.E. teacher.

A P.E. teacher.

I don't lift very much. I lift about 5 gms that's about it.

Ok.

I figure if I do the least amount of work I'm more likely to put on loads of weight. So I only lift about 5 gms. I'm sitting there going. You know I'm doing the, I'm doing the fastest of everyone. And everyone's really impressed until they see how much I'm lifting.

He had a nasal feeding tube but asked to have one inserted in his stomach instead because he didn...

And then I decided that I didn't want the nose tube anymore. I had a choice. I could swap the nose tube. 

Yeah that's fine.

The, I could swap the nose tube for a feed tube in my tummy. It goes directly into your stomach and no one, no one sees it. 'Cause a feed tube coming out your nose and strapped to your face is really noticeable. 

How did you feel about that?

Well I thought, you know, I'll go for the, the one in my stomach, you know, because I was told it. At, at that point we had discovered that I would be on the feed long term. And with the nasal gastric tube you have to change it every month. Plus when you're sick you have to change it. So it's like you could change it two or three times a month. So I thought if you have it in your stomach if you throw up it's not going to come out and it stays in. It's permanent. 

But to have the nasal tube was it bothering you?

It wasn't bothering me at the time but when I was, when I was told long term I knew I couldn't have that then.

Why?

Because having a tube in your face 24 hours a day every day is ok when, you know, when you tell your friends, 'Well it's not permanent, because those tubes aren't permanent. It's like it's not permanent. These things will come out.' And they're like, 'Oh alright'.

When you know you're going to be on it for a very long time, for years. Then it's like, 'Ok it might be a bit less than semi-permanent, a bit more than semi-permanent'. You know it's like, maybe permanent is the word. So I thought ok, plus I don't have to get it changed. When I throw up it's not going to come out.

Newly qualified doctor want to show off what they have learned by using long and complicated...

James' I guess so 'cause a lot of doctors don't like to tell me what's going on, you see.

Why do you say that?

James' Well it's just my consultants I think. They don't like giving bad news. My consultant he's called [name] and he always tries to. If he has to give bad news he'll wait until he finds something good. So he could have the results in two weeks of whatever he's done and you could wait two months because he'll have to wait until there's something good to tell as well. And when he has to tell bad news he usually waits ages to do it, you know, just in case something good will happen.

Always tell what. Tell the, tell the young person everything that's going up and use small words. 'Cause sometimes doctors use all the medical terms and terminology and sometimes even the parents don't know what they're talking about. So it's like use words that every day, you know, use everyday English to explain what's going on 'cause it's a lot easier to deal with when you know what you have.

Have you had experiences of that, of not understanding when they use  long words or medical terminology?

James' Well it's, it's more of that the new doctors, they like to impress people by using all these scientific terms.

What do you mean by new doctors?

James' You know just doctors that have come to a new ward or come to this hospital new and.

Mother' Newly qualified really because.

James' Yeah newly qualified.

Newly qualified ok.

James' And they like to use all these, these, this terminology because they can I think. It's like, you know, we've learnt all this stuff we might as well use it. And they, I think they forget that we have no idea what they are talking about. We do not know what they are saying. They could just be saying blah, blah, blah as all we could, as you know, for all we know.

And what about your consultant, the person that sees you?

James' Now he's always been very good. He's always used quite, he's always used small words hasn't he? But he's been with the hospital for ages, years and years.

Ok and the nurses. What's your experience of the nurses?

James' Oh they're very nice people. You know you. 'Cause I'm with the same nurses all the time, you see, 'cause it's, it's the nurses that go to the hospital, stay there for years in the same place. So you get to know the nurses and they get to become your friends rather than just nurses. You know so it's just a very friendly atmosphere, very nice people.
 

Says that his younger brother has not seen much of their mum over the last few years because she...

Yeah the one that is eleven, he's called [name]. Because Mum's had to spend so much time with me he's, he's not known, he's not had Mum in his life since he was like six. You know he's not seen very much of her. So I don't I think it affected [name] too much, the fourteen-year old. It didn't affect him too much. He was eleven, he was coming up on ten when it happened, when I first got sick. He was nine and a half. So it's like, alright. It's not too bad. And you know it's just tiring. You know because I'm up at the hospital all the time and my brothers sometime have to come with me. And driving up and down and going on trains and stuff, it's just tiring. And it's annoying when things go wrong.