I’ve been able to help other people through transplant, you know, I’ve had people tell me that I’m the reason they’ve signed up to organ donation and donor cards and like yeah you just get to spread that it works, just cos you die doesn’t mean your lives finished.
me: some people feel mistrust towards the nhs, believing that if your an organ donor they own try as hard to save your life:
Adam: no, well the guy that died for me to live was completely brain dead. he was dead, they were using machines to pump blood to keep he’s organs alive, as soon as they turned it off, he was dead straight away, they couldn't of done anything for him.
so you think this heart transplant has made you look at things differently?
yeah, you try not to waste anything, i look at it like i don't want to feel as though I’ve disappointed the donor. the whole thing about doing this big run is to like, not just to prove a point to the general population, but to make him and he’s family proud as well.
i had my transplant at the age of 9 but that was just one of 6 major heart operations i had had.
from the beginning, the general make up of your heart, you have 4 chambers, but i didn't, i had one. they call this a tec…… of fallots….
so technically speaking its 3 faults, not 4. all the blood was just mixing together, the lungs were feeding oxygen in, but it wasn’t necessarily going anywhere. when i was 9 months old they fixed it by putting, they cut me (the big scar round my back) and took my arteries out of this arm (points) and but them into my heart to create channels. when i was 2 they did a proper fix, where they create the chambers and then that failed so they gave me a pace maker, well it worked but i needed a pace maker to make my heart beat. but then thats just a battery, so that ran out when i was 7 and when they replaced that, because of where it was sat here (pointed under he’s heart near under he’s arm) it was sending the signals through the wires but it was also the signal was jumping as well so it turned out then when i was wresting my heart rate was going up to 400 bmp and when i was trying to exercise it was almost stopping and by the time they caught it, i had 3% heart function, which they got back up to 13%.
i couldn’t walk upstairs i couldn’t walk to the end of the road, i was in a wheel chair for almost 12 months.
me: obviously thats no way of living you cant do anything
no, i mean i didn't go to school at all in year 5 at all (jokes and does a ker-ching gesture)
it was, you know, they sit you down and say if you don't get a transplant, you’ll have 2 months left.
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at the time it was just another operation i think now as a adult it would seem worse, like if they said now you need another one id be like skitzing out, an absolute mess.
it was my choice they asked me if i wanted it, but to me it was just another operation. i didn't have any connotations of anything.
i didn't understand what the fuss was about, i thought it would just be like last time, i’d go to asleep and wake up better again, i probably didn't appreciate that it might be the last time i go to sleep.
did the doctors tell you what could happen?
they cam and said do you understand what a transplant is? if you don't have it or if anything goes wrong, like you’ll die. so it will either work, or you’re not coming back at all. like i was too far gone for then to even try to rescue me if it didn't work you see.
Can you describe a memory or time in your life when you felt you were stopped from being able to do something or join in with things pre-heart transplant? How did this make you feel?
one of the biggest ones is that i cant travel to alot of countries, I’m not allowed vaccinations, the therapy for the transplant means that my immune system doesn't work, so if i have a vaccination it has the adverse effect, it actually gives me the disease. and then i die.
so i school, i couldn’t have the meningitis vaccination or anything, but because everyone else had them i actually caught meningitis of them, because they’d had the immunisation. i came into enough contact with it to have the same effect as if i was normal and has it. i went into hospital and they said you've had at touch of meningitis.
this could of stopped you from doing other things, for you to thing about ‘what could happen’ constantly, you could of come a bit paranoid?
yeah i mean you could become the boy in the bubble quite easily, like you wouldn’t want to touch any other person incase you caught something, but i just think whats the point in having a transplant, to stay in your house.
i remember when i went into secondary school, they wouldn’t let me play football because they were terrified, and i just ran on and played anyways.(laughs) but back then i was like the 21st child who has had a heart transplant so nobody knew any different, but i knew that i wanted to play rugby, and if i got hurt it was my own fault.
10.04
can you remember what you felt like when you got the phone call for your heart transplant.
well their was 2 actually, both times i was just sat in the house when the phone rang and i knew both times, before the phone was answered. i don't know weather it was because the phone rang at a weird time during the day, it wasn’t in the middle of the night it was like 5,o’clock or something. before it was answered i remember bursting into tears, and my mum not answering the phone, cos she knew as well. she could tell that i knew what is was.
do you think you burst into tears becuase you were overwhelmed?when i try and thing why i don't know, i mean nobody likes going in for a operation, but then all the way through like,i mean obviously my parents were freaking out, but i was just in the back playing with my toys.
they said that i would obviously get an ambulance because newcastle is like 10000 miles away, but my mum doesn't travel very well, so the second time, we were like well we won’t get a ambulance but can you send hospital transport. a hour and a half goes past and know one turned up and then this old guy turns up in this battered old car. ‘sorry i was in the garden, i had to tidy up… we were like alright (laughs). so then we got rid of him, and we went in our own car, and as we were driving over their was a massive rainbow over newcastle.
in the hospital it was obviously all stations go, but because i was just shoved in a room, you dont see all of that, they just came and said take these tablets.
so for the you the process seemed slow? well yeah, from getting to the hospital at like 7 and then going to surgeory was like 5 hours, which for them was probably the most intensive 5 hours of the week, and for me it was just like, I’m just gonna chill out on my bed, take this tablets and feel like weheyy’ (jokes about being out of it)
game boys were brand new then, and i got given a game boy, that was my treat, but they gave me it before i went into the transplant surgery incase i didnt come out again. i just remember like my mum having to keep catching it because i kept falling asleep, like i just kept dropping (starts laughing) i was so full of drugs ready to be aleathnityized that i just couldn’t stay awake, which was better aswell becuase obviously you’re calm.the last thing i remember is the surgeon came out to see me right in front of the doors for surgery and thats when my parents had to leave, and that was how i knew, because i remember looking up at the clock and the clock was like 11:59 and he was like ‘are you ready?’ and i was just like ‘bahaah’ stoned out of my brain apparently. haha
is there anything you would like me to express in my work about your experience?
that its positive, the one thing that really pisses me off, and some people have different views on it which is fair enough, but people who have had transplants, celebrate the day they got it. and i don't. its horrible. i mean that does upset me that one (gets emotional) its not a celebration on that day. like someones dead. so a celebration but not like its the best thing. but i think the strongest message is to show the family thats donating the impact that it has , cos we (him) sees it everyday, but they don't.
you’ve got to be respectful to them. yeah like we (him and fam) acknowledge it but they have parties and stuff which i think is disgusting. theirs a family sat in a graveyard somewhere.
but yeah thats the only bit not to touch on. yes its celebration of life but not …. like people put on Facebook like oh x amount of years go me, no mention of the donor like i would put it on like ‘23yrs’ doesn't matter what i achieve, if they hadn’t of done what the had did.
like if people do put it, and they don credit the donors on it, i just say like your not even human, how can you say that and not even mention them .. and they just say well of course I’m thing about them. that should be the first thing your thinking about not the last.
like what i do is nothing, they have to get up everyday son, daughter mother, etc isn’t there anymore. yes its good, but we need to promote it, that is not something to sing and dance about .
you’ve got to remember their is somebody somewhere, their worlds come to piece.
i mean if you need a transplant. it is quite disturbing, you are on the verge of praying for somebody to die, but you down want anybody to die.
like if i do this run and do it, thats a celebration of whats achievable. its more for he’s family.
like my mum would probably smack me in the face when she realises I’ve ran 66 miles - she knows am training for something but she doesn't know what.
but thats for him.
susanne: thats kind of hope for other people swell, you’ve gone to to do amazing things.
well yeah I’ve gone into hospital and m doctor like, are you still running? yes. how far do you run? .. he shakes he head and he’s like, you idiot, but really in he’s head he’s like, actually. well done. you cant say thats brilliant keep going in a professional capacity but behind the scenes they’re like yes, like, were on to something here.
i mean i was lucky, i got a 92% match. like if he had been related to me, it wouldn’t of been much of a shock, but because he was completely unrelated it was a really good match. but i mean there a still other people that still suffer and cant do things.
I’m too stupid, pig headed, I’m not gonna stop, even though people think that i should.
me: but like you said, if you lived your life like that you wouldn’t do anything. you’d live in a bubble.
yeah exactly i i think alot of people think thats there… well I’m not gonna donate because they just sit on their arse and claim benefits.
Susanne: he tried to teach me to run. several times, he's a lot fitter then i am!
i mean like yeah, i don't get benefits i don't get help, i still have to go to hospital every few weeks.
yes there are people who abuse it ‘oh I’ve had a heart transplant i don’t need to go to work’ well you shouldn’t of had it then.
theres a girl i know who had one and doesn't leave the house, she’s had her kids taken off her cos she won’t look after them, and the first thing she said apparently when she came round was ‘i wish you’d just let me die, i don't want it’ to me, i would of just took her straight back into surgery took it out and given it to someone who wants it. what a waste.
she got the heart because she was the worst case, but the next case didn't get one and they might of become the next priminister or… anything you know what i mean.
echocardiogram
inside the chambers of the heart.
echocardiogram
inside the chambers of the heart.
'when i was born one, this whole middle section was missing, it was just a big whole. the different colours show the oxygenated areas.
me:i like the idea of drawing things together which just look like images but when looked at closely all make sense why each image was draw to communicate a message.
'i thought with the anatomical heart diagram, instead of having the features and a physically line diagram, i would get watercolours of the chambers instead, then people would be like 'oh thats weird whats that?' instead of it being an anatomical heart, its the actual heart you see.
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