Not Just the Incredibles - Exploring the Everyday in Organ Transplantation

EXPLORING THE EVERYDAY IN ORGAN TRANSPLANTATION

Welcome to this resource – a report of findings from the NOT JUST THE INCREDIBLES research project, written for both transplant professionals and post-transplant patients.

Usually, the public come across organ transplantation as a story about a dramatic (sometimes tragic) hunt for a donor, or when a ‘happy ever after tale’ is told that sees the recipient overcome the odds and go on to lead a remarkable new life thanks to the amazing generosity of their donor.

As the title of NOT JUST THE INCREDIBLES suggests however, the reality for those closest to transplantation need not always be this way.

For the project we asked some of those who have had transplants and the lab staff who play an essential role in enabling them to happen to tell us their stories, to share what their experience of transplantation is.

What they have to say is – we think – very interesting…

WARNING: Some of the stories in these pages are sad and others happy. They’re complex, like life! If you have any concerns after reading it, do speak with your doctor, nurse, or another trusted healthcare professional.

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“

I did actually design myself a tattoo which I had done about my personal experience and stuff…

It’s an angel working on God’s train. She’s an angel working on me. Music. The heartbeat.

And that’s the DNA.

TRANSPLANT THEME SONGS Rod Stewart – (I know) I’m Losing You

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CONTENTS INTERVIEWS Living with a Transplant..............................................................4 Pressure....................................................................................6 What is a Successful Transplant?.................................................8 Transplantation at its Worst.......................................................10 Transplantation Now.................................................................11 BH’s Map.................................................................................12 The Effects of a Transplant........................................................14 Transplant Superpowers (and Supervillains).................................16 WORKSHOPS Why lab staff?..........................................................................18 Relating to the patients.............................................................19 Shoes......................................................................................20 Life on call..............................................................................22 NOT JUST THE INCREDIBLES Timeline and What next?...........................................................23 Acknowledgements...................................................................24

For NOT JUST THE INCREDIBLES five transplant patients were interviewed.

Each of them had had a very different experience: the organs received included the liver, kidney and pancreas and the time since their first transplant (some had had more than one) varied from between 11 months and 12 years.

In addition, two workshops were conducted with staff from renal laboratories in Liverpool and London, whilst a kidney recipient also attended the London workshop.

In both interviews and workshop, it seemed somewhat ridiculous for me (Tim Jeeves) to attempt to exclude my own experience, I was there as the recipient of a bone marrow transplant and this inevitably shaped the conversation.

This work is licensed under a Creative Commons Attribution-NonCommercial-ShareAlike 4.0 International License.

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LIVING WITH A TRANSPLANT In October 1998, I had a bone marrow transplant. At the time, I thought this would mark the end of the cancer treatment I’d been having for a little over a year but this wasn’t to be the case. Finding a small lump in my leg a few days after coming home meant another month of radiotherapy was in order, whilst after that, a host of illnesses and medical interventions would punctuate my life for the next 20 years. Whilst there has also been regular periods of good health, what has now become my medical history – the inflammatory bowel disease, the colon removal, the skin cancer, the malignant growths inside my cheek, my slowly crumbling kneecap, and an incredibly painful summer of intestinal blockages – can all be traced back to this time.

The bone marrow I was given saved my life but I’ve found it to be a complicated gift. Transplantation of any organ is a major procedure that, if it doesn’t kill the recipient, inevitably has a huge impact on the life that follows. In my case, aside from the not insignificant medical consequences, I’ve found myself living with a pretty complex set of emotional responses.

At times, I’m able to find genuine value in the time that I was ill and the way in which my life was saved; I can talk with other people that have known illness in ways that I wouldn’t otherwise be able to, I’ve witnessed incredible instances of just how kind people can be, and I learned, at quite a young age, something about the fragility of life.

There’s a flip side to these experiences though. At times, I find myself expecting too much from my life and those that are in it, I know there’s trauma within me that I’ve not been able to resolve (it doesn’t take long for me to be ill back in hospital for this to resurface) and sometimes I’m frustrated my body doesn’t work as well as I’d like it to.

Of course, if I’d never had the transplant I’d be dead now, and I’m very grateful to all those who contributed to giving me the best part of 20 years (and counting!) that I wouldn’t have had without it. I’m lucky to be alive – people in circumstances similar to those I found myself in don’t always make it – and yet the life I’ve been given has also, at times, been distressing. In part this has been due to the after-effects of being ill, but it’s also because that’s what life is sometimes. You don’t need to have someone else’s organs to feel sad, angry or bored.

The transplant has left me with a complex mix of emotions; the difference between feeling indebted and grateful for what I’ve been given is a subtle one. The reality of recovery is that it doesn’t all go in one direction and often isn’t very dramatic; as the artist and activist Brian Lobel has noted, ‘Healing is an unsatisfactory resolution’.

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And yet, in the stories that are normally told about transplantation, little of this complexity is to be found. In the media transplants are usually encountered as either a dramatic call for a donor or the tragic failure to find one, and when a more complete story is attempted (such as with Tracy Barlow on Coronation Street), the recipient’s recovery is often swift and total.

Even the transplant community has, at times, made me feel as if I should be more positive than I am. A short read of the memes shared online reveals a call for attitudes such as “Live life like your donor is watching” or announcements to donor families that “I think of you and your loved one each day. Your gift has meant the world to me”.

Why are transplant stories so often told with this positive spin? Is it because these tales - which are undeniably true for some - are the easiest to share?

Is it because they give the happy ending that a traumatic story demands?

Is it to compensate for the tragedy of a transplant that fails - for surely the opposite of an unsuccessful transplant is a successful one?

Or maybe it’s to encourage donation? Do people donate because they want to give someone a perfect life? Or is it because such a magical gift – a gift that sees a part of one person’s body become part of someone else – demands a particularly magical story?

Perhaps it’s to help those that are about to have a transplant? If I’d met my future self whilst I was having my transplant, I don’t think I would have wanted Future Me to tell Transplant Me what would happen in the following years. If Future Me had blurted it out anyway, I think I may have given up during my transplant on more occasions than I actually did.

It’s impossible to say for sure why transplant stories are told like they are, but the interviews quoted in the first section of this booklet make clear that the reality of my story is neither uniquely bad nor unusually complex. There’s a sadness in much of what is shared but there’s also a great deal that gives me comfort. I wasn’t necessarily expecting to feel this way when we started work on the project but the generosity and honesty of those I talked with has been a privilege to encounter. I’ve found that there’s something about connecting with someone through an experience that previously felt like it was mine alone that is both uplifting and humbling.

As the usual narrative tells it a transplanted organ is the gift of life, but what is often missed is that, like life, that makes it both good and bad; magic, tragic and mundane. If there is a beauty to be found in all this, and I’m pretty certain that there is, it’s only by embracing these gifts in all their complexity – the complexity of life – that we stand a chance of finding it.

Tim Jeeves September 2017

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DO YOU FEEL A PRESSURE TO FEEL A PARTICULAR WAY ABOUT YOUR TRANSPLANT? Even now, twenty years after my transplant, I still find it hard to find the space to talk about the long-term effects. Perhaps that’s because I’m supposed to be better and whilst, in many ways, I am (for now), illness isn’t given much space in the healthy world.

Thinking about the pressures I put on myself, even though I’ve repeatedly told myself that I’ve let these go, I know – in my more honest moments – that I probably haven’t. I have high expectations for my life. I don’t want to waste everything I’ve been given.

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If If I don’t feel well…

I won’t tell people that I don’t feel well.

I’ll just try and get on with it myself, y’know?

And… try and put a brave front on things when really you feel absolutely awful. But because people think you shouldn’t be ill anymore…

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– I know that, y’know, he [my donor] died anyway. And I don’t… y’know…

I don’t mean to be horrible in any way but... he was dying anyway or… he didn’t die for me.

– Yup. – Y’know…

– Yup. – So I kind of… I don’t have that guilt… but I’ve… I also got to know five people really quite well through my illness… At various stages…

And four of them have died.

– Right…

– [Sighs] And I do feel very guilty – yes that… Why am I still here?

– There’s a pressure from myself. A massive pressure from myself. Yeh. – To feel what? What kind of way?

– Um… I feel that I should be feeling brilliant and I don’t a lot of the time. And that… And… Sometimes I feel very guilty that I’m not doing amazing things.

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Early on… I’ve got to do something equally great or better to warrant this wonderful gift and to show the world how much I appreciate it. Wow… That was hard to deal with.

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The trouble is… You try and say how you feel and stuff like that and are scared of being taken as a whinger… I actually want to say ‘Yeh – it’s great!’

Obviously it isn’t…

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– Doctors do expect you to be super positive all the time. And perhaps some of my consultants don’t get it that if you are feeling a little bit low, they’re sort of like – I’ve got a couple that are ‘Pick yourself up. Be grateful for what you’ve got’.

– Yeh – ‘It’s going really well’. I’ve had people tell me that...

‘It’s going well. You should be happy’. And I’m like… ‘OK. I’m not happy though’.

– ‘I’m not feeling happy’. No, no… I get that. Or… You’re feeling tired – that day – you do have a bad day and you’ve got an appointment. ‘All your figures are fine. You’re progressing well’. Well explain this to me! [Laughs]

Cos I was so tired I couldn’t walk too far and even friends would expect me to do what you were normally doing and I – you feel like you’re always having to say ‘You do realise I am quite ill…’.

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TRANSPLANT THEME SONGS Ludwig van Beethoven – Ode to Joy 7

WHAT, FOR YOU, IS A SUCCESSFUL TRANSPLANT?

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I was dead a long time before I got sick. I was not living my life… In all likelihood I would have been dead by now – for real. There’s so much that I’m doing now that… I just never… I just kept putting everything off… As if I had all the time in the world.

I’d say the initial 3-6 months is a success. You’ve changed that person’s life most of the time for the better or saved that person’s life.

So, initially it’s successful... from a doctor’s point of view – they’ve done that transplant and you’ve seen the surgeons and you go to the medical team - they’ve been successful in what they’ve done.

But if you get arthritis, blood clots, your intestines get stuck inside, that’s got nothing to do with their operation being successful, that’s just part and parcel of the aftereffects which another team of doctors deal with. And then they have to be successful at their little job.

– I thought… I really naively thought, I’d get a transplant and it’d be new life. And it has been a new life. But not what I planned. My expectations were over the top.

– Do you think of your transplant as a success?

– Of course, cos I’m alive and breathing. But in the way of what it’s done to me… Oh it’s a hard one isn’t it?

Success is when you’re happy in your own skin.

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– Oh, they’d say [the doctors], ‘Your stats are all good’ or… like with mine my GFR is fantastic at the moment… or…

I’m not like I was before… spending months in hospital, I’m back home… I don’t do insulin every day anymore. I don’t do dialysis. They will tell you those are successes… And actually yeh, I should say that… But I s’pose my values are personal-wise whereas theirs are medical, aren’t they? I think I should be further on than I am but we’ve gone over that.

It’s unrealistic goals… I suppose I’m saving the NHS money – I’m no longer on dialysis which is dead expensive so they would see that as a plus. Yeh, I suppose, they would go for the medical side of it, rather than the personal side.

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Well a successful transplant is enabling the person to lead as normal a life as they can – so, say like, if it was kidney and the person was on dialysis and they have a new kidney and then they don’t have to spend those three or four days a week or however long it is, yeh, I would term that a successful transplant.

”

I mean mine has been a successful transplant – as in it’s given me another two years that I wouldn’t have had. But my illness may be back in this new liver already…

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TRANSPLANT THEME SONGS French Montana – Unforgettable 9

THREE WORDS TO DESCRIBE WHAT YOU THOUGHT OF TRANSPLANTATION WHEN YOU WERE AT YOUR LOWEST POINT…

“ ” “ “ • Lost • Terror • Hope

• Amazing • So tough • Mind-blowing

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• Even at my lowest times I still thought it was amazing.

I would still… Even though I told everybody that no way would I go through it again at the time… I didn’t think I’d be able to. Now – if I had to had to have another one – I would go through it.

• I’d say it was – it’s not a single word – it was so tough.

To get through. Whatever that word is.

• Again, it’s not a word. It’s realising how clever the surgeons are… being kind of completely in awe of them… It’s mindblowing. That’s a good word. [Laughs]

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• I just wanted them to end it. Just… I can’t put up with any more. Just drug me up - more and more. And just finish it. I can’t go through this anymore.

• Emotional. Er… In one word. One minute I’d be talking to the nurse, just feeling… and I’d burst out crying. An hour later I’d be alright again. I don’t know – your emotions. Just a rollercoaster.

Couldn’t explain anything...

• Pain. Mentally and physically painful… Neverending. Just…

When is this going to stop? This ain’t going to end yet. This ain’t… I’m gonna get worse – I’m gonna get bad. As time goes on you do get worse and worse and worse and you think ‘I can’t get any worse’… but you feel worse. Your mind’s more painful.

Your body’s more painful. And you’re like ‘How much more can my body take? Just please… I can’t deal with it’.

• Regretting • Resentment • Longing to be somewhere else

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THREE WORDS TO DESCRIBE WHAT YOU THINK OF TRANSPLANTATION NOW...

“ ”“ “ “ • Life • Love • Hope

• The families of the donors are incredibly brave • Amazing

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• One of them I think is the families of the donors – I don’t know if that counts does it?

• Again, I do think it’s an amazing thing… so it will probably be the same word [‘amazing’]. My feelings are still the same.

• Very memorable. I can’t go a couple of days without it popping up in my head in some form…

• Self-conscious is another word… the way I look and stuff.

Majority of times – I haven’t got it now - I normally wear a cap.

So… it’s not that I want to keep myself covered up… it’s just that… previous experience… when I’ve been jaundiced and stuff like that I’ve noticed… A lot of people stare and look but people have actually took a wide berth thinking it’s some sort of contagious disease and it’s got me angry. I’ve been in like Asda and they’re like… and you can see them looking and I’m trying not to make eye contact but… steroids I think… and that’s it – I’m off. Y’know? ‘What’s your problem?’ and causing arguments and stuff…

• How long’s it going to last? How long have I got? When’s that day going to be that… y’know? Tomorrow morning I could wake up, I could feel really ill and I could end up going to hospital and say ‘Yup’… Because even though it’s like a slow process, I think, y’know, it dying off… It could be like ‘Sorry, look - it’s got to the stage now that we can’t really do much for you. It’s unreversible with tablets. All we can do is…’ When’s that day going to turn up? And is this what I’m – like – going to die from? Or, am I going to die of something else?

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• Hope • Fear • Wants to give back

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TRANSPLANT THEME SONGS Labrinth – Jealous 11

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THE EFFECTS OF A TRANSPLANT

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To suggest that the effects of a transplant can be put into two distinct lists, one headed ‘Physical’ and another ‘Mental’ would be to create a false opposition. Someone’s physical health affects their mental wellbeing and, similarly, mental health shows up in the body.

Nevertheless, it is possible to suggest that, although the physical effects of transplants vary according to the organ transplanted, there is also common ground to be found in the emotional aspects of the transplant experience.

For instance, the interviews suggested that the recipient’s health before the transplant affected how they judged its effects; those who had no health problems tended to find the impact of transplantation harder than someone who, after the transplant, found themselves able to do things that they had previously given up on.

I was told ‘Oh you’ll do 99% of the stuff you was able to do before’ but unfortunately I can’t. I can’t do drawings like I used to. I used to draw – pen, paper… pen and ink – but I get the shakes. I can’t draw.

I can’t even watch a film… ten minutes into the film my mind’s wandering.

I can’t concentrate. My mind just wanders. It’ll take me twenty attempts to watch a film… and I just lose concentration too quickly. My life changed that dramatically. Overnight. Just BAM – totally different. On one hand yeh, I’m still alive but on the other hand my quality of life decreased so much. Unbelievable.

And I built myself up and then BAM, I needed another transplant, it went back down again. And I’d build myself up and something else would happen and it’d knock me down. It’s just been a big rollercoaster – up and down, up and down. Now, I’m nearly 40 and I need two new knees.

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I assumed, after the transplant, I would feel fantastic. But obviously you don’t do you? And I think I ended up with more complications from the diabetes that should’ve stopped but didn’t… I’ve now got Autonomic Neuropathy which causes… I’m tired all the time, I can’t do exercise… I fall over quite a lot because your blood pressure just drops quite quickly.

So things that I didn’t have before are worse now but obviously things are a million times better. I wouldn’t regret it. … I feel I was sort of told everything would be hunky dory afterwards and 6 months down the line I would be back at work and… Didn’t happen. I think it took – it must’ve been about a year and half, maybe two years before I started to feel semi-normal…

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Unsurprisingly, mental pressures may also vary depending on the organ.

Some organs are only given by a deceased donor, which may have different effects than if the organ is given by a living person, as is possible with bone marrow, kidney and, occasionally, liver transplants. To have part of a dead person inside you can cause a very speci­fic kind of survivor guilt, although interestingly, this was only an issue for some recipients. For others, guilt arose from knowing people with similar health problems who didn’t survive.

Common responses included isolation and anger, and more than one interviewee had planned aspects of their funeral. Unsurprisingly, hospital appointments and taking tablets were unanimously considered boring.

As well as the more negative aspects, there was also – for some recipients, for some of the time – increased understanding and affection for those they encountered in their post-transplant life. To reiterate what is almost the catchphrase of this research: transplants are complicated, there’s a lot going on.

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People like us are the minority. Not many people go through life with bits and bobs of other people’s bodies stuck inside them.

I’d like to know some history about the bloke. Like, my head’s gone completely. Have I got the liver of a suicide victim? Was he a manic depressive? Have I got the DNA – have I taken it on? At the moment, I’d love to know that… I would like to write a letter and say I’m extremely grateful but at the moment I don’t feel very grateful.

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I go out sometimes. Just go down to B&Q or Asda’s of an evening so I feel part of the human race. It’s just that… y’know… I get no pleasure in buying stuff – there’s nothing I want… I’m trying to pretend that nothing’s happened – I know it… That I’m a human…

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I was quite independent before so… I miss that.

I miss being completely independent.

I think before… I was very erm… not cold… but not really an affectionate kind of person whereas now, I’ll cuddle people when I see them… And I was always quite strict before, not now… He [her son] can do anything and get away with it!

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IF YOU WERE A TRANSPLANT SUPERHERO WHAT WOULD BE YOUR SUPERPOWER? AND WHICH SUPERVILLAIN WOULD BE YOUR NEMESIS? Though introduced to the interviews and workshops as a playful nod to the title of the project, the responses to these questions were surprisingly revealing about what people would wish to change about the transplant experience.

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I think I always like to make people happy and laugh – so there’s a bit of a Billy Connolly in me. That’s why comedians do that – cos if they can make people laugh, they’re liked, aren’t they?

To be really comedic I suppose. Make people laugh – make me happy anyway. I’m miserable as sin at the moment.

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Make the organs live longer. Survive longer.

So you know that you’re only having that one transplant – you’re not going to have another one. Make it infallible.

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I think it [the supervillain] may be other people that are not willing to understand what you are going through... I kind of get the impression from some people that when they go to see their doctor – or whoever it may be – that they’re not very understanding. And they kind of dismiss things a bit.

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“ ” “ Promote ethnic minority donations.

– I don’t know how I’d be able to do it but I wouldn’t want people to feel guilty – as in, not feeling that they’re living a proper life since transplant… I wouldn’t want them to have any guilty feelings whatsoever…

– That’s lovely. Yup. – Cos it’s tough – it’s really hard to deal with that is I find.

And if I could stop other people from feeling that then I’d feel good.

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To be able to free people and myself from pain. Physical and mental pain; that would be what I want. Not like – ‘Here y’are - some morphine, you’re off with the fairies for an hour!’ Just like – you can be normal for a few hours... I want to give somebody that chance. ‘You’ve had a month of this now – so just have five hours off’. 5 hours to watch a film, or catch up on Eastenders, whatever you want to do. Get on the phone to somebody or get on Facebook.

Whatever you want to do. That would be a good power to have. Otherwise it’d be like invisibility!

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TRANSPLANT THEME SONGS Monty Python – Always Look on the Bright Side of Life 17

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WHY LAB STAFF? Organ transplantation is often understood as an act of generosity. Usually, it is the organ itself that is seen as the gift, as a present given by donor to recipient, although the work of the frontline medical team – the surgeons, doctors and nursing staff – will also often be remembered. There are however many other, less celebrated workers that play an essential role. These include cleaners and administrators, transplant coordinators and phlebotomists, counsellors and laboratory staff.

If it was just about drawing attention to the less well-remembered contributors to a transplant, we could have chosen to work with any of these groups of workers, but the lab workers are particularly interesting because although they work directly with patients’ bodies, they rarely have face-toface contact with the donor, the recipient or their families. Occasionally, they may accompany a doctor on a ward round, though more typically will only see a patient through a microscope. In addition, the decisions they make during their workday can be as life and death as the choices anyone involved in transplantation makes.

Despite the signi­ficance that accompanies what they do, as with anyone who works in transplantation, the everyday repetition of their job will mean that, over time, aspects of this extraordinary procedure become mundane. This paradox – the fact that their everyday lies at the heart of something incredible – is emblematic of what NOT JUST THE INCREDIBLES is proposing.

Interestingly, during the workshops, some lab staff suggested that recipients don’t need to feel grateful towards them because they’re just doing their job.

Facilitating transplants is what they’re supposed to do when they go to work, and so therefore shouldn’t be seen as altruistic.

Without wishing to place those working in transplant labs on a pedestal since, for many of them, work in the lab is just ‘a day in the office’ (with all the clock-watching and eagerness to get home that that entails), it is also important to recognise that others have a particular passion and drive for their profession. That being the case, when more than 30 years have been dedicated to a career (as was the case for some in the workshop) it feels somewhat disingenuous to disregard the generosity of the lab staff just because their terms of employment lists the tasks that they do. Perhaps not all lab staff are worth singling out for special praise, but it was clear from the workshop that a signi­ficant number deserve the gratitude of patients and their loved ones and that this isn’t always remembered.

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The Liverpool Workshop March 2016

RELATING TO THE PATIENTS Lab staff won’t typically have much direct contact with the patients, yet still they can form a range of bonds with them.

Some of these don’t last long. The donor’s relationship is inevitably short term but even here, their name, DOB, the hospital they’ve come from and the kind of donor that they are is known (they might be a relative, an altruistic donor, or deceased). These relationships may be brief, and the information may be quite limited, but the scientist can still develop an emotional link – tragedy can be found in the cells of a young deceased donor.

Typically, the organ recipients’ relationship with the lab will be longer. With kidney patients, the lab staff ­first encounters them before they begin dialysis.

Whilst looking for a donor, they then test a number of blood samples. When a possible donor is found, the new organ is tested for a match; and then – if the transplant is successful – the patient will be followed for years to come.

Over the years a massive amount of data is accumulated and as this story of an individual’s immune system builds, the scientists can start to recognise the same individual each time they have their 3 month check; they can get to know someone very well – at least on an immunological level. Whilst larger labs automate much of the monitoring process and are therefore more anonymous, in a lab such as that in Liverpool, where 100 people have a transplant every year, the lab staff develop what can only be described as relationships with particular profiles and their irregularities.

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SHOES

A key element of the process that matches a donor kidney to a transplant recipient is a protein called HLA, and to help understand how kidneys are matched it’s useful to think of HLA as if it’s a massive shoe rack.

On the HLA shoe rack are loads and loads of different makes of trainer.

Different people put the same kind of trainers on the shelf in different ways and this is what makes each rack unique. One person might order their shoes Nike-Puma-Reebok-Converse, and someone else will go with Converse-NikeAdidas-Dunlop. Not everyone has all the same brands, but lots of people will have some overlap. They might have a unique shoe rack, but as these examples demonstrate, two people can both have Nike.

It’s this, the brands that are on the donor kidney’s shoe rack that are important in working out whether someone will reject a particular kidney or not, not the order that the trainers are found in.

As one of the scientists in the workshop explained, if you’re waiting for a kidney and are a mismatch with a potential donor it could be because you normally wear Nike or Converse trainers but they have Dunlop on their shoe rack. In this instance, you’ll have antibodies to Dunlop which means that if the kidney was transplanted into your body, your immune system would form more of these antibodies and reject the donated organ. This isn’t such a big problem though since hardly anyone wears Dunlop trainers, you can just try another kidney and see if that matches. However, if your antibodies will reject Adidas then this is more difficult – you won’t be able to get a kidney from anybody who has Adidas. And that’s a much bigger group than the group of people who wear Dunlop.

TRANSPLANT THEME SONGS Destiny’s Child - Survivor 20

In practice, about 10% of those on the renal waiting list have such widespread antibodies that there’s a pair of trainers that their body reacts to in nearly every kidney; their body will refuse nearly 100% of donated organs. To find an organ for them is like looking for a needle in a haystack; this search for someone who’s nearly genetically identical to people like this takes up around 80% of the lab’s time. At the other end of the spectrum, the most easily matched people can accept around 1 in 50 donated kidneys.

Likewise, the physical condition of the patient is a factor, if they’re in good shape then more risks can be taken but if they’re not, then the match will need to be more precise. For example, if a patient has had a heart transplant, is it better to transplant the kidney (and risk impacting the heart function) or is it better to leave her on dialysis? What this can boil down to is asking the patient to make an informed decision about whether she should accept a significant degree of ill health in order to guarantee she remains alive.

TRANSPLANT THEME SONGS Cher - Do You Believe in Life After Love?

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LIFE ON CALL When on call, lab staff can – within limits – do pretty much what they want.

Whilst they won’t be out drinking or visiting a friend at the other end of the country, shopping on the high street, seeing Crewe Alexandra play at home, and cutting peat were all mentioned as activities that had been interrupted by a call from work. One of the workshop participants had even been called just as he and his family were sitting down to Christmas dinner, though such disruption was put into perspective when the donor he was matching turned out to be 8 years old and he realised another family’s Christmas had been ruined forever.

Depending on the individual’s role within the lab, what is asked for when they’re called will vary. Some will just need to give advice over the phone, others to go home and access a remote database. Others still will need to go into the lab where they will spend 5 or 6 hours working in quite a pressured environment with a transplant team waiting for them to give the go ahead.

Aside from the medical urgency of what is – literally – a life and death situation, pressure also arises from simple logistics. There’s no specific theatre for transplantation – surgical spaces are borrowed as needed and so, in any given instance, will only have been allocated for a certain amount of time.

As we talked, it became clear that – although disruptive – it can also be very rewarding to give a cross-match at 4 in the morning. People feel good to do it, at least until the next day, when tiredness catches up and more mundane work still needs doing…

The London Workshop March 2016

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2015 January

2016 January March

TIMELINE Initial pitch to FACT and other partners Identifying funding, making contact with potential partners and interested individuals Funding granted by Arts Council England Project presentation at Sick! Lab in Manchester Workshops in Liverpool and London with transplant recipients and lab staff from Royal Liverpool and Royal London hospitals.

2017 May to June Individual interviews with transplant recipients July Research phase completes November–December Distribution of report Due to a number of interruptions because of poor health, NOT JUST THE INCREDIBLES has taken significantly longer to complete than first anticipated. Special thanks to Arts Council England and Roger McKinley at FACT for support in managing these delays.

WHAT NOW?

We make some art!

It’s early days, and there’s a lot still to process, but already it’s clear that we’ve been touching on some important perspectives. When we began, the two strands under investigation – the day-to-day post-transplant life of organ recipients and the everyday experiences of lab staff - felt as if they shared significant common ground. Although presenting different aspects of the transplant experience, these two groups were linked by a common relationship to the everyday. This link, whilst still present, no longer feels so key, so perhaps there is a fork in the path here, two different routes to explore, and if they should reunite as the work develops, so much the better...

LISTEN TO THE TRANSPLANT THEME SONGS ON SPOTIFY Search for Not Just the Incredibles in Spotify or visit:

https://open.spotify.com/user/timmyfatlips/playlist/6LO8z1LAzybhKWG1g3FPDD

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ACKNOWLEDGEMENTS The NOT JUST THE INCREDIBLES Team: • Tim Jeeves (Lead Artist) • Mamoru Iriguchi (Artist and Logo Design) • Leo Burtin, Making Room (Creative Producer and Workshop Photography) • Michael Achtman (Access Coordinator) • Adam Gregory (Publication Design) We would also like to thank our project partners and those that have given support along the way: FACT, The Chelsea Theatre, Arun Gupta at the Clinical Transplantation Laboratory in London, Paul Brookes and his team at the Infection and Immunity: Histocompatibility and Immunogenetics Laboratory in Liverpool, Joe Butler, Brian Lobel for invaluable advice, and especially all those transplant recipients who were willing to speak so honestly about their experiences – SL, BH, NP, NH, BD and VP.

www.givingintogift.org

To be involved with the development of NOT JUST THE INCREDIBLES (or to be kept up to date with what happens next), please write to info@givingintogift.org

Alternatively, we can be found: Online at www.givingintogift.org/not-just-the-incredibles On Facebook at www.facebook.com/groups/notjusttheincredibles On Twitter at www.twitter.com/GivingInToGift

Additional copies of this booklet – as well as the screen-reader friendly version – can be downloaded from: www.givingintogift.org/not-just-the-incredibles

To add your details to the Organ Donation Register, please visit: www.organdonation.nhs.uk//register-to-donate/register-your-details