Jamie - Interview 12

Age at interview: 15

Brief Outline: Jamie has a heart condition called hypoplastic left heart syndrome. He was diagnosed when he was six days old and underwent pioneering and life saving surgery. He gets breathless very easily and is not allowed to play any contact sports. Jamie absolutely loves football so at home he plays it in the garden with his sister and a neighbour.

Background: Jamie lives with his parents and his two sisters. He is not allowed to play any contact sport but he does swimming, cycling and he plays golf once a week. Ethnic background/nationality' White British.

More about me...

Jamie was six days old when he underwent pioneering life saving surgery. The medical condition that Jamie lives with is called 'hypoplastic left heart syndrome'. He was born with a normal right side of heart but the left side was underdeveloped. Surgery converted his heart into a single chamber (ventricle) system. This is only a temporary fix and he will need a heart transplant in the future. He gets breathless very easily. 

As part of his treatment Jamie takes warfarin (which thins his blood) and digoxin (which helps the way his heart beats) twice a day; morning and night. He does, on occasions, need reminding but he manages his medication by himself. 

He sees his cardiologist once a year. He likes his doctor because he asks about his life in general and plans for the future. But sometimes when his consultant talks to him about his condition Jamie does not always understand the meaning of some terms the doctor uses like 'mild abrasions'. 

Jamie is not allowed to do any contact sports, but he can do swimming, cycling and he plays golf on Sundays. He sees no point in attending PE lessons because he cannot participate in team sports. He absolutely loves football and feels it is unfair not being able to play it at school. In fact the thing that he finds the hardest about living with his heart condition is that he is unable to do sports like football, hockey and netball.

Jamie does not like to talk about his heart problem. He says that he feels embarrassed about it and sometimes it upsets him. At school everyone knows and no one has been unkind to him. When something is bothering him he usually talks to his parents or to his favourite school teacher. 

Says that he gets breathless very easily and describes the situations that aggravate his problem.

I suffer from hyperplastic left heart syndrome. It's a disease, well it isn't a disease it's like... a part of me where I've got one half real and one half plastic. I get breathless very easily. I have to take warfarin, digoxin and some other tablets and I have to take 'em every day and every night at a regular time. 

Some sports I can't do. Some sports I can do like running. Usually teacher usually says, 'Go, we'll do, we're doing 100, 1500 metres round one track. Everybody else do three, I do one because I get breathless very easily so I go around it once and completely conk out. Everybody else has kept going 'til third lap and they've absolutely bloated their self out and that's' pretty much it.

Ok how does it make you feel when you can't?

I can't breathe properly once, once I get breathless.

I need to like take a drink of something because I get pretty breathless and' I just get breathless all the time. I just don't like being breathless. I just feel absolutely out, out, completely out cold. I just feel like fainting once I've been breathless.

Enjoys playing football and finds it frustrating if he is not able to play at school.

What does it mean good mood?

If, say if I'm like happy I just want to have a cycle around. If I'm like up really in a bad mood I just don't want to go outside for a whole day.

So bad mood means what?

You don't go outside, I don't want to go outside.

Would that bad mood mean you're not that happy?

Yeah.

What things make you not that happy?

Don't know, really don't know.

And what things make you happy?

Seeing if it's a blue sky and football. I just play around with my Diadora football, kick it against the garage for goals and use my sister as a goal keeper and my mate comes round and has a kick around as well. So he, so he comes and has a like kick around with the football. And we just have a kick around until latest. And we just swap round until final goals and then he goes home afterwards. And then we just, and then I just come back in afterwards watch a bit more tele and then go to bed.

How does it make you feel to have this condition, to live with this condition?

Hard. Hard because I can't do best things. Can't do best things like football and hockey and netball.

Ok you would like to do those. Ok.

Yeah.

Ok. So it's more to do with the sport, with physical activities?

Yeah.

How does it make you feel not to be able to take part in many sports or activities at school?

Well mostly if it's like footie on a Thursday or footie on a Wednesday it's usually. We all get into a massive line across the pitch and there's like six people, six or eight people as captains and they go' one, two, three, four, five, six. Go to your eight things, eight six. One, two, three, four and so on until it's ended. And there's one left that's me. You can't play. 'What'. I was like that. It's I want, it's not fair on every, it's not fair on me. Everybody else to gets to play football except me. Because I like football, I love football and it's just not fair on everybody. It's fair on everybody else but it's not fair on me 'cause everybody else gets a good game and it's not. It's doesn't but it doesn't, it doesn't let me play.

Ok so it gets a bit frustrated.

Yeah frustrated.

He thinks that it is not fair on him to be unable to play football at school. He does some footie...

What has the doctor told you regarding taking care of yourself and what you can do and you can't do?

Jamie' I'm not allowed to play football. I'm not allowed to play, that's actually I'm not allowed to play contact sports. But I just like playing football when I get home 'cause it's, it's good exercise. And I can swim, I can cycle and I. And  when we have P.E. once Thursday and a Wednesday, Thursday Week A and Thursday Week B. And we have it Thursday last thing and Wednesday fourth thing. So and there's no, there's no point of me going to P.E. 'cause I just stand there and just do nothing. 

And you go swimming?

Jamie' Sometimes but not all the time like Saturdays if it's like a really busy day we just like go swimming sometimes. After like, after like some activities we just go swimming for a bit and then come home. And then, that's it.

Mother' Don't forget your golf.

Jamie' Oh yeah and golf on a Sunday.

How does it make you feel not to be able to take part in many sports or activities at school?

Jamie' Well mostly if it's like footie on a Thursday or footie on a Wednesday it's usually. We all get into a massive line across the pitch and there's like six people, six or eight people as captains and they go' one, two, three, four, five, six. Go to your eight things, eight six. One, two, three, four and so on until it's ended. And there's one left that's me. You can't play. 'What'. I was like that. It's I want, it's not fair on every, it's not fair on me. Everybody else to gets to play football except me. Because I like football, I love football and it's just not fair on everybody. It's fair on everybody else but it's not fair on me 'cause everybody else gets a good game and it's not. It's doesn't but it doesn't let me play [sigh].

Ok so it gets a bit frustrated.

Jamie' Yeah frustrated.

Football. I just play around with my Diadora football, kick it against the garage for goals and use my sister as a goal keeper and my mate comes round and has a kick around as well. So he comes and has a like kick around with the football. And we just have a kick around until latest. And we just swap round until final goals and then he goes home afterwards. And then we just, and then I just come back in afterwards watch a bit more tele and then go to bed.

He doesn't always understand what the consultant is saying when talking to his mum during the...

Now when he explains things to do with your condition do you understand when he talks to you or sometimes he uses language that you don't understand?

He uses language that I don't understand they're like mild abrasions. I don't get what he means by mild abrasions. And I, in the, and I do get, I understand some words like, he bruises easily, like he bleeds under the skin. And it's like and that's and just talks about that a lot of the time.

Do you say anything to him? Do you say, 'Excuse me I don't understand, can you explain this to me?' 

No. I didn't get a chance because he was, he were talking to me mum all, he was talking to my mum all the time.

So he doesn't talk to you?

Well he sometimes does but not all the time but he just talks to mum mostly, my mum mostly about what he's going to do, what I'm going to do.

Ok. And then your mum explains to you?

Yeah.