I’ve got my running which is borderline obsessive I’m training for the bod graham round which is a 66 mile fell run 28 thousand feet of climbing and 28 thousand feet decent in 24 hours and ill be the only heart transplant to attempt it let alone finish. (Susanne`: mental)
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.
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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.
'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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this is a X-ray thats been colours in - as everything would show up black. so they pump a dye into you ( alive X-ray rather than a picture, so this is an actual realtime video, to start you can barely see the outline of the heart then the dye hits it pops up on the screen and they can use it to see if theres any blockages.
running, photography, talking to other people about my experiences - i have spoken to the head of every transplant thing in the uk and big lectures.
organ donor card in there
things that people will see but won't register straight away- until examine the piece.
I am here because the family of a 12 year old boy were brave enough to allow their son to save 8 lives, when his couldn't be saved. People want miracles, people ARE miracles.
Sign the organ donor register in whichever country you reside.
"You can't take your organs to heaven, and heaven knows we need them here"
organ donation have their own version of the olympic games - the transplant games, i dont compete, but its good for everyone else.
they want me to run it but there longest run is 5 k, and thats nothing, my heart hasn't even started beating properly because theres no nerves in it after 3 miles, if they introduced a mountain running category id be there!
i just cant see the point in flying to Argentina to run for 25 mins,just to say that I've done it it.
a put a picure of my chest up the other day, and girl popped up to me on Instagram and said 'my family donated organs 10 years ago, and finding this accounts been the best thing in the world' cos like everyone else is just pictures of hospitals and stuff and I'm like hanging off mountains and like i do show off my scars, i run shirtless 9 months of the year, and if people ask ill tell them. id rather they asked instead of just being like 'eh' like you'll see from my pictures, this side of chest is completely wrecked cos its been cut open, pushed, proded and the ribs aren't in the right places, but id rather people said 'what happened' and then you get into it and then there like wow this amazing.
susanne: yeah just to tell the story raises awareness.
'yeah they might not be organ donors and they might go away and go you know what ill go away and sign up'
susanne: yeah not only that, one day these people might come into that situation (needed a transplant ) and to know someone who has been there and done that and are now crazy enough to run up fells, inspiring and positive.
on the flip side, without kids, and I'm not married if they told me i needed another one now, i would have to seriously consider having one. because its somebody else turn, which people dont understand either. i think that only comes from people that have had it, like everyone else is like no you've got to have another one, well its somebody else turn, which is a odd way of looking at it.
susanne: but lets face it yours is probably a lot more healthier then mine and her (me) its looked after so so well your heart.
when i first had it they said its 5 years, if i saw 18 it would be a miracle, and that was 23 1/2 years ago.
and now there saying there not a reason why they won't think ill die of old age rather than heart related complications.
i think it is due to the fact i don't play by the rules.
people are terrified of not playing by the rules. you can go on the website and people are saying 'omg i was meant to take my tablets at 8 and its 5 past 8 should i ring clinic' what!? i haven't taken them at the same time for 23yrs! but they daren't do that! everyones terrified of the after effects, whereas yes i was quite lucky in the sense i was a child and i grew up being looked after and when i got to the point of looking after myself i knew certain things haven't done me any harm so far. and if it does theres only me to blame.
I'm quite happy with my own mortality, its weird, because i don't get upset when people die very often, because I've been on both sides of it, I've been told I'm gonna die, and made it, it doesn't upset me, its life, so thats another thing/part of it a swell like I'm more afraid of getting old then i am of them saying your gonna die.hate the thought of getting old. not being able to run anymore. just being stuck!
You have a different outlook on life thats for sure.
i know loads of transplants so if you need anymore input.
i moved to america for 2 years
I've not just stayed at home at lived through the transplant.
i worked for selofield so i was working out on a site.
skiing, white water rafting, hunting, fishing. like everything you cant do here cos its always raining.
when i first moved to america, you dont get a gp, you have individual doctors, the cardiologist out there was like 'can you get upstairs?' yes 'describe a typical weekend?' this weekend we went skiing 'oh thats nice you went to a resort and watched people skiing?' no we went skiing 'i dont understand' even he as a 40yr veteran of cardiology didn't realise heart transplants could do that. this is something he's spend he's entire life studying. so like the stigmas not only the general public but with people you think would know.
yeah they will be people who will still be on oxygen on loads of tabs and I've got tiny 4 in the morning and 5 at nights.
people come into the shop (where he works) and asks where good for a run and you tell them and they ask oh how long does it take? and i say well it takes me a bit longer because of this (and i tell them) and they just stop and there like what? why are you at work? well I've got bills to pay I've got rent, I've got a house to pay for. and they cant get past that you should be a invalid really.
you might swell die if your gonna sit in the house and do nothing with it.
yeah you need to celebrate the people giving organs but also you can only celebrate that by showing that actually you are using it. theres no point doing piece or promoting people that sit on there arse all day and do nothing.
I've got heart surgery in December. and everyone at work are laughing there heads off because I'm at work the next day. there like do you not need a week off? and I'm like no ill just come in and it will be fine. and there like we cant! and I'm like why not!
i dont think I've had it that rough really, yes I'm covered in scars, and yes i had over 60 operations, I've got it way better then a lot of people.
the perfect example is with karen isn't it (my cousin Richard wife) you can say whats worse, crones disease or a heart transplant? you say that to the public and 99% will say heart transplant, I'm not in hospital everyday with chronic pain, where i cant do anything so really she's got it way worse for something that sounds way better to suffer from, so its that perception aswell.
even the surgeons say transplants are better then any other types of surgery because its just plumbing. theres no massive skill involved. you take one out put one in. your not making anything up as you go along. so they'd rather do transplants. like quadruple heart bypass is the most complex heart surgery so they would rather give you a heart transplant but it doesn't work like that, because there not enough donors. and swell like health and safety has made it harder for people needing donor, like people in accident aren't dying as often, people on building sites aren't dying anymore which is good, but on the backside of it theres not as many organs.
everything in moderation.
like you can see my scar, but then see a picture of me running on the fells you'd think ;oh well if he can do that, then what am i complaining about.
i think mine are quite cool, like when I'm running you can see my heart beat though my chest. like nobody else can do that.
adams girlfriend doing a photography project on organ donation. its changed her appreciation she has.
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