Between 2004 and 2008, Ken was
Here a few of his writings on this
can be found.
See My Multiple Bodies
Link to: Hallucinatory Stories
KEN’S STORY: THE DIARY OF A TRANSPLANT PATIENT
Feet gone black,
Eyes sunk deep,
Red blood spewing.
Red vein spiders,
Dark stain pissing.
Brain gone missing.
Mouth all drying.
Am I dying?
This draft was written over 2008 and completed ion 2009. It is a seriously edited version of a longer and more detailed life story of my illness. This account is meant to serve as a short account that may be of interest or even help to transplant patients.
For roughly three years, I was seriously ill with end stage alcoholic liver disease. I was a very sick person indeed, with some considerable chance (up to one in three) that I would not survive. Five years on, I am here to tell the tale. Not I suspect a startlingly odd one – more of a commonplace one.
Before I get carried away telling all kinds of sickness stories, I had better get clear what my illness entailed and tell you a little of my symptoms and ailments. Oddly, as the experience recedes, it becomes harder and harder for me to recall even that I was ill, let alone what problems the illness brought. So it has proved very useful to write this as it reminds me now that I was indeed pretty ill. I guess it can be quite helpful for a sick person to draw up a list of their symptoms and I have done such a list at the end of this booklet: it really helped me see the nature of the beast I was living with. As this table of symptoms suggests, all indeed was not well! .
In my earliest, pre-diagnosis days when I had no real idea I was even seriously ill, I put on massive weight (identified as ascites). I started to slow down with poor mobility, very lethargic and prone – very unusually for me– to depression and low moods. My bowels were becoming utterly erratic but I carried on as normal. Later on, I routinely experienced low energy (sleeping and dozing up to eighteen hours a day), jaundice, nausea, cramps, itchiness, swellings, blotches, minimal appetites, failing memory and mental functions, odd muscle aches, regular vomiting and diarrhoea, and total loss of interest in sex. I experienced persistent bowel and urinary problems; could vomit – without warning – half a small sink of blood; and could get very confused – how do you turn on a shower, how do you clean your teeth? I would lose my memory – I could experience whole days when I did not know who I was, where I was, or what I was. I gather that I had portal hypertension and gastrointestinal bleeding (from bleeding oesophageal varices and abnormally enlarged veins in my oesophagus and stomach), encephalopathy (a deteriorating brain function that can progress to a coma) and peptic ulcers (which eroded the lining of my stomach). And these are just the symptoms. Throughout all this, you have to face life and death issues: when they call it ‘end stage’, you suspect something is up I knew from the first diagnosis that liver failure is life threatening. I was told figures – which I quickly repressed – about survival and non survival. So hanging over me through all of this was a dim sense that I might well die, this could be endgame. And even if I didn’t die, life as I knew it would never be the same again.
Although I had many serious symptoms for quite long periods, the most disturbing was encephalopathy. I must have had it some twenty times. It nearly always came in the night. Initially I was aware of memory loss, confusion; but in later episodes I lost contact with what was going on in the world more or less completely. I entered another world. I can sense that world now – it was a world where nothing worked; everything I touched seemed to break or fall. I would keep looking for the toilet but could not find it. I would try to turn the television off and the switch would not work. I would pull at the towel to get the shower to work! And strange people would be asking me stupid dumb questions (and even so, I did not know the answers!) Oddly, I always knew who my partner was, Everard, and I would always do what he told me to do (or so he says!)
I gather encephalopathy comes in four stages. At the start, which for me I think could be dated back before my diagnosis in 2005, there were sleeping problems, mild confusions and slight personality changes. In a second stage, developing during 2005, I was often very drowsy, had the shakes (the liver flap) and my memory had lapses. Stage 3 was much more serious and in my last year this was becoming more and more common for me. I would completely lose contact with reality. Memory loss was an early sign; then practical skills like washing and toileting became a problem; but in this stage, I would sometimes not know who I was or where I was. The world became a strange void in which I shuffled and fell. Everard was all I really recognised. He held me together. Stage 4 is identified with bringing on a coma. I am not sure if I ever quite reached this stage- but I certainly went completely out of it a number of times.
The short story of a liver gone bad
So how did my illness come about? What is its story? When I was diagnosed, I learnt that roughly eighty per cent of my liver had become non functional. It had what they call ‘scar tissue’- the damages had been covered up by a kind of skin that does not perform the usual liver functions. The liver is the largest organ in the body, and performs over 500 functions. It keeps my system pure and provides energy. It is a critical life giving organ, but it is one of the few internal human organs capable of natural regeneration of lost tissue. I am told that as little as 25% of remaining liver can regenerate into a whole liver again; but whatever the level, I was well beyond it!
There are many pathways to liver disease, but mine was the common one of excessive alcohol. No doubt about it, I drank too much. And I had done for many, many years. When I was young I used to be a Methodist and ran alcohol abstinence church stalls; but by the time I was in my early twenties, I was enjoying large quantities of beer most nights. Until I was 60, I guess I drank some beer most nights; and increasingly this was accompanied by wine. After a glass or two, I could find myself easily drinking back whole bottles! I was a cheerful, jolly social drinker – but a pretty heavy one. I drank initially because I was gay and shy: I looked extravert but I was intensely scared of social situations (and sexual encounters). In latter years, and jokingly, I called myself a non-diseased alcoholic! I was never aggressive or violent, and I did not meet the requirements of any alcoholic/ addict check list: in my later years I did not drink spirits, never drank in the mornings, and I never missed a day’s work due to drink. Nevertheless, drink was central to my life – not a day went by without drinking for thirty five years. And slowly it was working its ways on my body. I will talk more about this later.
My new friends – the doctors
Once I was in the hands of doctors, I got the medical treatments that I needed. (I had flirted a little with holistic stuff earlier and whilst this may be fine for some minor problems, I am now suspicious of its value in treating a liver that has almost wholly packed up). I had a great many tests, treatments and medications, and ultimately major surgery. My first key procedure – a procedure I had within hours of arriving at my first hospital in California – was ‘abdominal paracentis’ whereby some ten litres of my body fluids were removed from my stomach through a needle. I was also introduced to the drug Spirolactolone, which became my new friend for two years; it controlled the balance of water and salt in my body. Along the way, I have had liver function tests galore, complete blood counts (CBC), abdominal X rays, ultrasounds a plenty, and MRI live and body scans, as well as a number of endoscopies through my throat and oesophagus to view the liver and its environment. All this provides more and more information on the functioning of my liver. In addition, in order to review my whole health situation and to assess whether I was up to major surgery, I had many other tests: on the heart, the chest, the brain. Blood samples were taken in true abundance leaving the body heavily bruised and scarred. At its peak, I was having a dozen in a day! I became very thin, yellow, frail and decidedly aged. And I often pondered just how little of this treatment would have been available just fifty years ago, shortly after I was born?
I had to rest a lot, take pills and drink fluids to prevent dehydration. My medications were mainly for anti-nauseas and bowel regulations (Lactulose ruled!). I had to eat a good diet (quite hard when you are not hungry), avoid salty foods, and of course stop drinking alcohol (and as it happens, I know not why, this was not an issue for me. For many, I think this would be a major problem in itself).I was very ill, but overall, I did not spend a huge amount of time in hospital – a little over two months.
Placed on ‘The List’
I was put on ‘The List’ for a transplant in May 2006 and had the surgery in February 2007. I talk about the curious but central nature of this ‘List’ later: but it is no conventional list for sure – more of a swirling, changing vortex. By most standards, nine to ten months is not a long wait. During this period I had to be on a three hour alert. I was – like all potential transplant patients – perpetually on call; and at the beginning jumped every time the phone rang. Eventually I got more relaxed; but when the phone rang at night, I and my partner were always ready. It was a world of waiting. When the call finally came, it was at 3.45 am on a Sunday morning – unexpectedly. We were rushed to the hospital with alarms blaring and lights flashing. The surgery took about 8-10 hours (I was told). The procedure itself is one of the most complex in modern surgery. As I understand it, the diseased liver is cut away from the structures and blood vessels that hold it in place in the abdomen. The nerves are severed and to this day I cannot feel this part of my body very well (something to live with, probably for the rest of my life). The management of bleeding and the connecting of myriad veins must be critical issues. The new healthy liver, having been painstakingly removed from a donor body, is then put in place, with major blood vessels being reconnected to the liver and the blood flow restored. The final connection is then made to the bile duct. In my cases, I had a ‘split liver’ transplant, which means that the donor’s liver is split between an adult and a baby and given to two sick people – in my case, me and a twelve month old baby (These are comparatively rare and slightly more risky).
Post surgery does not mean the end of my troubles. After spending more or less twenty four hours out of it all, I woke up heavily sedated and much muddled to find my body fully wired up (on ventilators and the like) in an intensive care unit (ICU). Life in intensive care is a very different world for which nobody prepares you: a post-modern purgatory, hovering between the possibility of death and the hope of life. I then spent around a week with very serious hallucinations – probably the worst part of my whole experience. But after this, in my case, it was largely progress and advance. I noticed others for whom the hospital had almost become a home, but I was in hospital for only a month with minor problems; and then in ‘quarantine’ for about three months ( The immune system must not be compromised and is very vulnerable during this period: hence the avoidance of people and contagious possibilities). Problems with my medication meant that became diabetic( steroid induced); and problems with my bile duct meant I had to live with a bile bag atached for four months. There were some kidney problems and I started to develop ‘fits’ of dizziness and sickness. All in all, and with not too much hassle, I came through. I am now as normal as anyone can be which is not to say I am very normal!
But now, and for the rest of my life, I take immunosuppressant medications to keep my body from ‘rejecting’ the transplant. The successful surgery is only the start of it all – the key problem for the rest of my life is to ensure that my liver is not rejected by my body. The body’s immune system would normally attack the new liver because it is something foreign, and it has to be prevented from doing this. And so, I now take immunosuppressant medications which require fine tuning and careful monitoring, but which keep the immune system from attacking the new liver. I have had a few minor side effects (including kidney problems, diabetes and bile duct concerns), and I now need lifelong follow up with my dear doctors. I suffer from what I call ‘my funny turns’: from time to time, and without warning, I feel very dizzy, get extremely nauseous, become violently sick for a few hours and then –after a few hours rest- I am fine again. It just might be ‘diabetic hyper’ –but it rarely matches the usual clinical description of this. It is no big deal – except for its untimely and unexpected sudden arrival.
Otherwise, all now seems well. The medical wonder of transplant surgery is not just the skill of the transplant surgery, but also the achievement of modern pharmaceuticals to keep me alive afterwards. I will always live with memory of the donor and the transplant; but most of the time my life now seems to be restored fully. At times, though, the past seems more like a bad dream from which I awoke to find everything ‘back to normal’.
But whatever else my experience may have been, I think I can say that, for a time, I was seriously ill.
This then is the background to my story. A lot of illness, yes; a haunting ghost. But I will not be dwelling on it. There are many other –maybe more interesting- things to say. There is so much more to illness than illness.
Many people try to keep dairies as they fall ill. There might seem to be time to do it; it would focus the mind as the body failed; it might even have some value. And never mind the private value: there would also seem to be a mass of self help stories based on such diaries for others to learn from. Shortly after I was diagnosed I bought a beautiful note book and vowed to keep my record.
But I failed miserably. In my case getting ill may meant of lot of time sitting around with little to do. I had very little energy, I was very frail with my hands, and my mind was not functioning well. None of this helps with regular diary writing. So sometimes I could write some detail; some days I could write one liners; but most days I had other things on my mind.
So what follows is not a diary in the strict sense of the word. It is more of a description of the three years in which I was seriously ill: some notes on some issues, problems and events put into a rough chronology. Some of these were actually put in the diary at the time; most were constructed a little after the period (usually between May- July 2007 as I started to feel better); some have been written later to enhance the flow of the dates; and some have been removed to avoid too much repetition. They have been assembled into a chronology – they were not always written in this order. Chronologies are often seen as the easiest way to read a life – even if they are not always the most helpful. The chronology of my illness can be simply set out and I will use this as a framework for writing the story.
At base, there were six stages, which I will look at in turn:
- ‘Every thing seems OK’: warning signs
- Pre-transplant 1: carrying on
- Pre-transplant 2: on the list and waiting
- The Transplant Moment
- Post-transplant : Hospital and home
- ‘The Getting Back to Normal’: life restored
- (Life ever after?)
‘Every thing seems OK’ : warning signs
It is often hard to know when illness arrives: strokes, heart attacks, major accidents- yes you know they have arrived (or not!). But for many illnesses like mine, it tip toes up on you. I spent months resisting any sense that I was seriously ill: I was, as they say nowadays , ‘in denial’. My body was growing obese, but I thought it was just a sign of getting older. Nobody commented on it, not least my doctors (who in fairness I very rarely saw- I have never been a person to visit doctors frequently). My breathing was getting harder. I felt stressed quite a lot of the time- but these days, almost anyone in work feels stressed. I was off my food. I did not want to drink very much. It was clear that there were hosts of oddities in my behaviour: unusual vomiting, regular mouth bleeding, much bruising, persistent tiredness. I had some problems with my voice in my lectures. But most noticeable of all, I felt ‘down’ a lot of the time. This was very much out of my character; and I could not explain what was happening. I just felt very much under the weather a lot of the time.
It was only when I went away to Santa Barbara, California for a sabbatical that issues became noticeable. I had already decided that I needed this space to ‘pick myself up’. Santa Barbara is a beautiful place – and a few beach strolls and a lot of fresh air, along with less work should do me the world of good. But I was wrong. As soon as I arrived, old friends told me how ill I was. I had lost my joie de vivre. My body also increasingly told me that all was not well. Denial became harder and harder.
In this first stage, then, life is carrying on routinely and much as normal through gradually there start to be tell tale significant warning signs that ‘something is wrong’, ‘all is not right’, ‘everything is not normal’. Sometimes this may be an abrupt warning – a serious episode that is a clear danger sign. The ‘black foot’ and the ‘vomiting of blood’ were taken by me to be serious signs that something had to be done. It was also the cumulative impact of a lot of minor episodes: my bad days, feeling sick, not right: my daily symptoms of nausea, itchiness, lethargy, breath problems, food and bowel distress. It all brought me to a diagnostic moment. I had to seek out help and be told what was going on. For a long time though I was in denial. Being a healthy person most of my life, spotting illness was not easy: I guess those who are regularly ill find and report their symptoms more readily?
Looking back over my diary, I can start to see odd illnesses which at the time were not taken that seriously or seen to be interconnected. But now it seems all too apparent that I started getting quite ill in the summer of 2004, and had obviously been ill quite a while before. Things did not come to a head till March 2005 when I went to an emergency room in California. It is clear to me now that I spent a lot of time denying my illness and doing nothing about it. If I had acted sooner, maybe the transplant would not have been needed. But there again, would I have stopped the drink if I had not had the shock of being seriously ill?
So, starting in 2004, there were odd signs. A foot became curiously enlarged and looked much bruised; a stomach became massively overweight, creating breathing and walking concerns; I experienced a loss of interest in sociability and drink; and there was a growing gloominess and feeling that things were not right. I was cancelling social things – quite odd for me, and quite out of character. Perhaps I was overworking? I was going to have a sabbatical from the university in January 2005 – with no teaching but a lot of writing planned. That would be a good time to unwind – I planned to take it at the University of California in Santa Barbara, where I had been a visitor many times before. There I would be able to relax and so do something about it all.
The autumn term passed by uneventfully really, but I was generally pretty run down. I noticed in lectures that my voice was going; my energy was draining rapidly from me. All was not well…
The Trip to Santa Barbara
We travelled in late December to Santa Barbara– the Tsunami was taking place as a world event. Greeted by friends, I was immediately told that I did not look well. And very soon they also suggested that I had changed my character. I had changed from being a ‘half full glass’ kind of person to a’ half empty glass’ kind of person. I had become gloomier and darker. And I did not look right. They told me this within a couple of days arriving.
I took some exercise on the next day determined to get healthier. But trouble waited. Not only did I get rapidly exhausted (within minutes), but within hours I came out in dreadful bruising. Something was not clearly right. My exercise plans had to be re-thought; my long beach walks (always part of a trip to Sunny Santa Barbara) had to be curtailed. I had writing to do- and I did a little most days. But my mind was not working easily and I did feel much run down. We had quite a few visitors and they were good for me- they at least kept me up and running. I also had a conference to lecture at in Boulder, Colorado in February. And so for two months I held myself together outside: but inside it became clearer and clearer that something was dreadfully, dreadfully wrong. I was not me. What was going on?
I made a few diary entries:
10th Feb 2005 we are in Boulder, Colorado. The air here is thick – because of its location in the Rockies and people talk a lot of ‘atmosphere sicknesses. Well I got it; well and truly. I started to have very severe breathing and walking problems. I had to give a major lecture and I could hardly do it. (No one knew me well enough to know that this was not really me lecturing-it seemed to go OK). I could not eat much. In general, I really felt awful- but tried to carry on. Everard let me sit regularly as we walked around the town. I just couldn’t do much walking. At a party though, I remember enjoying a lot of margaritas as I cheerfully chatted with students!
20th Feb 2005 my clothes sit so uncomfortably on me these days. I am getting so large. I wear flowing baggy shirts and most of my trousers don’t fit –taken to wearing large, elasticised ‘clown’ trousers I bought in a down town Santa Barbara ‘dress for less’ shop…
26th Feb 2005 Friends John and Richard came to stay from England for a week. Try not to sit too badly, or talk too much about just how awful I am now feeling. But bad I am. I am very plump but have a very thin face; I can’t easily sit down, or walk very far. I bruise so easily; I have hundreds of little vein like spots all over my chest and arms; my ankles are swollen and look as if they are going black. I go to the toilet what seems like a hundred times a day. I feel so tired, sick, low. I am off my food, my clothes are all wrong – and I try to keep going on as normal.
The feeling is just getting worse and worse. There are now so many problems. I know it is coming to a head. As soon as they (our friends) leave, I must do something…… It is very serious.
9th March 2005 I decide to do something today. I ring up the doctors in Santa Barbara – who can’t see me for a good while. So we go the Sansum Emergency. For a quick flash of the Visa (and $100), they looked at me, saw my stomach, diagnosed liver problems and sent me to the nearby Santa Barbara Cottage Hospital where a bed awaited. I made some joke about it not being a life and death matter, and could I go home and prepare for the hospital? I was told quickly that life and death matters were not just quick heart attacks. I needed to go straight away. We were not cheered up by this. Everard had to drive me there: we were both in shock.
I see Dr Edward Bentley and am diagnosed with massive ascites. 10 litres of clear yellow fluid is removed from my stomach area, and there is a significant deflation of the abdomen. I am told I have severe cirrhosis of the liver. I was told it is very bad (I heard something about an 80% fatality within a few years but in the rush and the confusion this figure may have been wrong). And I was told that I had to stop drinking. I stopped drinking there and then.
How soon can I return to the UK? I am on medications, and after a few days in bed, get my strength for some little walks and travels. We read up a lot on salt and start a strict no salt diet. Buy an elegant note pad to keep notes about my illness. Start to feel a bit better, and am much thinner. But still look terrible.
Pre-transplant 1: Carrying on
The second and third stages come after the diagnosis and bring with them a lot of adjustments. Three stand out.
The first was the clear issue of ‘living with a serious illness’. Like it or not, I now had to come to terms with my life threatening illness: without the transplant, there was little hope for a long life and little hope of any ‘quality of life’. It is usually not said as bluntly as this, but gradually this is what I realised and what I had to ponder, handle, negotiate.
The second adjustment is the realisation that the illness now brings ‘a life of uncertainty’. Few of life’s old routines can now be taken for granted. Illness can attack at any moment and bring unpredictable moments. Life is always a bit unpredictable but now it becomes fragile and contingent. At any moment my life could be disrupted: bowel problems, sickness, mental black outs, pain, unbearable tiredness could hit me when they chose. Old routines – of work, family, friends, and play- broke down. New life schedules, routines and patterns had to be evolved.
A third adjustment that I had to make was that of ‘living with a three hour warning’. From the moment of being put on the list, I was told to have my bag packed ready for an immediate hospital entry. A call could come at any time –day or night, whenever a suitable liver was found and when it was an appropriate stage on the waiting list (a mystery process in a way- more of this later). And the call will say that I must be there within a few hours. There is no way a person on the transplant list should travel far away from the hospital base; and they should remain constantly on the alert. Some friends suggested parallels with the last stages of pregnancy- (though with transplants, the waiting can go on for several years). The climax of this stage comes with ‘the transplant phone call’.
The Return to the UK
On the 28th March, we return to the UK (I use all my frequent flyers in upgrading so we could travel in comfort). On April Fool’s day, I see my GP to fix an appointment with my local hospital. 4th April is my birthday and I have to give the opening lecture at a 6th form conference. I did not question whether I could do it. My mind was clearly set on the view that the worse was over and I could get on with my life again. I think the lecture did go OK. And I manage to do a few other lectures over this period – just. In general, I was trying to carry on as normal. But things were not really going very well. Notes started to appear in my diary with comments like…
30th April violently sick all day
10th May bowel strain – very painful
12th May sickness all day – in bed…..constipation setting in
15th May Harvey visits from the US: cook a meal; maybe better a little?
Or just pretending to be?
16th May Violent sickness in morning. Go to bed; confusion – unsure what day it is.
20th May Doctor gives me MOVICOL (5 sachets a day, with 125 mls of water) to get my bowels moving. Vile stuff and makes you very bloated.
21stMay Jon (my doctor nephew) visits. He and his partner are very disturbed (even shocked) and he says I am in a very bad way indeed. A flurry of activity as he comes with me to see my GP. New and major plans made. This is a major turning point. Liver specialists in London and Cambridge to be approached.
13th June First visit to King’s College Hospital in London
Doing OK: The lull before the storm.
It was not all bad news. From roughly June 2005 to March 2006, once I was established at King’s, I experienced what might be called a goodish period. The backdrop to this time was a general tiredness – my body could not do a lot. If I worked for an hour or so, then I was drained. Using the brain was as exhausting as using the physical body. I had to rest – three hours in the afternoon was very common. I would put on some music and wake up an hour or two later with silence. Rest seemed crucial. And some days of work might be followed by several weeks when I could not do anything at all! How did all this empty time pass- such a change from my old usual days?
I was more or less off work all the time and I had many bad days; most days I found it best if I rested a lot. But I could make small trips; go out for meals with friends; I went to Jeffrey Weeks 60th birthday party; and at Christmas I travelled to my beloved Santa Barbara again to see old friends. (14 Dec-13 Jan). This was quite a long period, and I was really not in too bad a state for this period. I was not drinking at all, avoiding all salt, taking my medications, visiting the hospital regularly. And they seemed quite pleased with my ‘compensation’. Boy was I a good patient! I was not well but I was not out of control. And maybe I could continue like this: but for how long?
My diary notes continue:
25th August ‘Encephalopathy’ – the word appears for the first time in my diary, with a very shaky handwriting and a very obvious concern about the spelling. This was to become my major symptom. My first notes on it say ‘confusion, but I am not aware of it.’
13th October Start discussing my possible retirement with Ellen Sample at the University
Nov 1st/Oct 30th Very ill at night, but unaware of it. Everard seemed concerned.
Medically, I think I was going through what is called a ‘compensation period’. During this period, the liver scrambles itself together and functions at a basic level. I was – for a while- off the critical list. There is a quiet hope when this happens – maybe the liver will restore itself?
2006: A YEAR OF SERIOUS ILLNESS
Throughout January to March, I am still doing very well generally. But a key Crisis Period (which I will return to as The Easter Episode) starting on March 31st sets me in a new direction. I awake on March 31 to vomit huge amounts of blood. Half a sink-full. This seems to have no explanation and came without any warning signs. We were straight off to the Emergency at the local hospital. Quite a lot of dithering at this stage, the hospital was not quite sure who I was or what to do. (They have no liver specialists! And their records on my attendance at King’s seemed very poor). We arrive around 8.30 – and I am in a bed by 5.00 that day! It seemed a long time for them to decide something was wrong? But they were very unsure of what it was. I change beds four times in a week and have a lot of visitors -Agnes, Steve and Phil, David, Rob, John, Colin. It is clear I am very confused: I do not know my height or weight and am generally very muddled. I was starting, as they say, in the trade, to ‘decompensate’ though I did not hear the word in the hospital.
When I look back on this episode I do wonder if the doctors in the local hospital had any real idea of what they were really dealing with. I had an endoscopy and some x rays. And the doctors came round once a day. But then – a week later- I was discharged. Nothing seemed very clear or cleared up.
Friday 31st March Emergency Hospital: Blood episode
Friday 7th April Out of hospital after a week
Easter weekend 21st Back in Colchester Hospital.
April 23rd Ambulance to Kings, Admitted.
The two weeks I spent at King’s marked a critical turning point (which I talk more about in chapter 10). I arrived at the hospital for a check up, but was admitted immediately. I knew that I felt bad; but they could see I was even worse than I felt. Spent a couple of days being very ill indeed – some of my fellow patients later told me that they thought I was a ‘goner’. But bit by bit, I came around – as people so often do – and found the doctors waiting to advise me that they wanted to do assessment tests to see if I was suitable for a transplant. Met quite a few of my ‘new doctors’ – including the wonderful Dr Agarwal, who swept in like a movie actor and inspired me with cheerful confidence. I move from being really very ill to feeling a lot better during my weeks there. But I experience a thousand little tests; and get the good news – I am now on the transplant list. More about all this later.
Pre-Transplant 2: The list and waiting
One cornerstone of transplant surgery is the wait for the donor organ. I will get put on what is called ‘The List’. For a person who has serious life threatening liver disease (and many other such diseases), getting on ‘The List’ gradually becomes a prime aim – along with, later, getting off it as quickly as possible. We transplant patients need to be on and off the list as quickly as we can.
I knew nothing about this ‘List’ when I was first diagnosed. Indeed, like most people, I knew absolutely nothing about transplant surgery. But slowly a number of things became apparent. First, my illness would not go away on its own, and certainly not with the aid of homeopathic medicines which some dear misguided friends suggested to me. My liver was in a fatal condition: I needed the major surgery of a new liver if I was to survive. Second, these ‘donor organs’ were in serious short supply – transplant surgery depended on donor organs like livers, and although there now exists major ‘procuring’ or ‘harvesting systems’ to make organs available, there is a chronic shortage of them. A donor liver is not just waiting for me to have. Third, this means that for the awaiting transplant patients, there has to be a queue – a transplant cannot just happen till a suitable organ is found. A waiting list has to be created and getting on this list – and moving up it fast – becomes a key issue. The longer it takes to get to the position on this list where your become ‘operatable’ – what might be called the ‘top of this list’, the greater your life may be exposed to the risk of death. A lot of people do not make it this far – and we patients know it. Finally, all this means a major debate about the best ways to organise these organ harvesting systems – so that they can maximise the numbers of organs available: should it depend on altruism (as it largely does now); or should it become open to market forces (which some argue would create more organs). At the same time, a major international black market for body organs has developed across the world. What system is best for making organs most fruitfully available becomes a key question.
When I was first diagnosed, I found my life hanging in the balance – depending on critical decisions that others were making about the future possibilities of my life. To try to make sense of all this, I have drawn a simple flow chart which suggests some of the key decision making moments in the transplant process.
How are patients selected to be on ‘The List’? The formal criteria that are listed by transplant agencies can seem to be officially quite clear and straightforward. For instance, since roughly 2002, in some countries (notably in Europe and the US) a system known as the MELD or PELD model is used for calculating numerical scales for liver allocation. MELD stands for Model for End-Stage Liver Disease (PELD stands for Paediatric model for End- Stage Liver Disease). Any transplant patient can now read all about them on web sites, and indeed a self calculator of one’s own ranking can be found on the UNOS web site. The system is based on three major measurements:
- Serum creatinine, which measures kidney function
- Bilrubin, which measures how effectively the liver excretes bile;
- And INR (prothrombin time) which measures the liver’s ability to make blood clotting factors.
Patients are ranked on a scale from 6 (less ill) to 40 (gravely ill). And in general these criteria, matched with length on the waiting list, are the key criteria for selecting tranplantees. The main exception is a category known as Status 1 – people who have absolute priority because they have acute (sudden and severe) onset of illness and a life expectancy of only hours to a few days without a transplant.
As a patient, I could feel the ambiguity that even such relatively objective formal criteria can generate. ‘The List’ seemed a bit like a moveable feast, or a spiralling vortex. In fact it is not really a ‘list’ at all. Although I never knew where I was on it, it seemed to be constantly moving in different directions. Although there are surely formal criteria, many other factors come into play – ranging from just how seriously ill the patient is, whether they could survive the surgery, and the difficulties of making a good match with the donor organ. This does not lead to a straightforward list in which you move slowly upwards: it is more like a kaleidoscope that has to be resettled at every meeting. Hence whilst I was told that I should always be ready, the call could come at any time, I was also told that I could expect it in a few months. I could anticipate it in the New Year. The Spring. Next Autumn. It changed as the months changed. And then suddenly, it arrived utterly unexpectedly-six months earlier than the most recent prediction that I had been given. This was not an ordinary linear list!
May 4th Back to Wivenhoe (Friends visit 17th Steve and Phil; 18th Jon and Tony; 19th Steph and Geoff).
June 1st Civil Partnership Ceremony with Everard (and friends Steve and Phil with David).
The long wait
From this period on – for about nine months – life was on hold. There was nothing much that could be done. Apart from being ill, I had to stay near to the phone and never be more than two or so hours away from the hospital. We had to have our bags packed and ready to go at any time.
At first, this meant a persistent anxiety –day and night. Every time the phone rang, we jumped. Was this it? And if the phone was to ring at an odd time –which it did from time to time- panic momentarily set in. It was a life in waiting. But after a little while – and just as the doctors and co-ordinators had said it would – we became aware that there was a long waiting list and we were unlikely to be seen for months. Indeed as time went by, the prospect of the surgery receded further and further into the distance. Always ready, we gradually became much more casual about it.
But as the likelihood of the call receded, so the illness became more and more omnipresent. It invaded consciousness totally and everyday had to be defined anew as to whether it was a good day or a bad day; and often days would change their shape as the day went on. Encephalopathy episodes were our major worry: Everard claims he could spot them coming on – and got me to bed as soon as he could. For me, this was the main worry. Encephalopathy is a major neuropsychiatric complication of chronic liver disease that occurs when large amounts of ammonia accumulate within brain tissues. It resulted in me losing much sense of reality. Forgetting was just the start of it: in a sense I entered a world I did not know- but recognised some slight things. Everard was luckily always identifiable in all this, and I always trusted him. The rest of the world was strange – but not hostile. Indeed I seemed to find it all amusing and funny and was- apparently – constantly amusing and benign. But it is a fearful – and dangerous- state to be in.
Most of the time I spent sitting: sometimes we would go on short car trips where we would walk a little; and sometimes I would even try to do some work. Friends would make brief calls – but Everard was a strict gatekeeper. Much of my time was spent in rest –dozing, sleeping, daydreaming and thinking. We were in constant touch with the co-ordinators about any issues; and I tried to keep myself as healthy as possible – ready for the phone call when it came!
There was a lot to think about.
Living on the list: waiting, waiting, waiting
Once on the List, life moves into a different mode: you are on call twenty fours day – any call that comes could tell you that a liver is available and that you must come immediately to the hospital. Formally, the transplant co-ordinator advises you of what you should have ready – the little packed case, a little loose change. The call could come day or night – so you must always be near a phone.(If you have to be in public places, make sure the mobile will ring or vibrate). You must not live more than a few hours away from the hospital – so you can get there quickly (any major travel in now ruled out). Be ready all the time.
So life comes to be lived under agitation. You are never far away from the critical call. Initially every phone call – and especially those that come at odd times- is fearful: this is it. But after a while, I developed an awareness of what I call the paradox of the List. The hospital tells you that you must be on the alert all the time as the call could come anytime. But at the same time they tell you that there is a long waiting list and it is unlikely you will get the call for six, seven, eight months – even a year. I came to realise that the call could come any time, but it was most likely to be months ahead. And all of this puts you on a long leash of anticipation…… ever waiting, but half not expecting. Whatever else, life is now lived cautiously and circumspectly. There is an ever present tension.
I waited from May 2006 to February 2007 – but I had been told not to expect much before the summer of 2007. I was lucky: my first call came to be my actual call – many calls are false starts where you arrive at the hospital only to find the liver available is not suitable for you.
Box: A world of meetings and appointments:
Tuesday 8th March. Around 2.00.pm: First major meeting at Emergency Hospital. Pay my fee and am seen very quickly. Tests galore and several doctors counsel me on my serious illness. I am sent straight to a hospital bed.
Tuesday 8th March. Around 5.00pm: a cluster of doctors visit me and ask general questions. This is followed by a large amount of signing and general paper work.
Tuesday 8th March. Around 8.00pm: a long meeting with the Ultra Sound woman. Lots of disturbing comments. Doctors and specialists ‘come and look at me’.
Tuesday 8th March around 10.00pm. Doctor conducts paracentis by my bedside, removing some 10 litres of fluid from my body. He tells me that I have a serious illness from which large numbers die in the first year; and he warns me to stop all drinking and cut down drastically my salt intake. He is kind and wholly up front with me about the seriousness of my condition. It is after this encounter that I decide never, ever to drink again.
I could lay out the detail complexity of later meetings that took place, but it could be tedious to look at. Here are a few highlights:
Here are some key pre list meetings:
Early April: First encounter with GP when back in the UK, and a visit to local hospital arranged.
18th April: Visit to local hospital. Not a good experience. The doctor – who turns out to be a no liver specialist – refers to me as “the alcoholic professor”, before he gives me a quite painful endoscopy. One of the few unpleasant people I meet- pity it came so early on.
Minor meetings with GP, not much happening during April and May till my doctor nephew visits – who is appalled at my state, and wants to see my GP.
23rd May: Meeting with GP and nephew. Crisis time. Now, better medication is arranged, and plans for action for specialist treatment in London arranged. My nephew saves me. If he had not come, I wonder how long I would have been given ‘the light touch’ as I tottered to inevitable death? A life shaping meeting.
13th June: Three weeks after ‘crisis meeting’, I visit the consultant at the London Hospital. Many tests and a plan evolved. Regular meetings in London thereafter.
August 2005 – March 2006: Relatively quiet period, with regular meetings with local GP; and appointments in London at roughly monthly intervals with tests of various kinds. Regular reports of meetings which indicated reasonable progress on my medications etc.
March 31 2006 – Early morning. Rush to emergency hospital with severe bleeding. Admitted. Strings of meetings.
April – In and out of local hospital several times; GP with house visits. Lots of confusion in my head. Generally a panic crisis time, where encephalopathy is setting in. Quite a few ‘bad hospital experiences’ at this time, in the local hospital. Many meetings I cannot really recall.
At a critical moment I was placed ‘On the List’:
April 24th: admission to King’s- seriously ill. Once emergency is dealt with, I am admitted for screening and tests. Many meetings over a two week period. Critical meetings included:
Doctor who is giving me routine check, but decides on seeing me that I have to be admitted there and then to the hospital; he ‘finds’ me a bed.
Meeting with Dr Kosh Argawal who sweeps into my bedside with a large team. High energy, pure charm and oozing positive life. Feel very confident with him. Becomes ‘my doctor’, and luckily he becomes central in my continuity. I have a very good feeling about him. Nice to feel that, even with team work, one doctor seems to be yours. He is not of course; but it is always good to see him. I come to see him as the doctor who got me on ‘the list’ – even though I know it is a major joint decision.
Meetings with a host of specialists. I seemed to have visits in hospital from
An anaesthetist – who comes to give me a pep talk and says: ‘the next time I see you it will probably be as you are about to enter the operating room’.
A potential surgeon – ‘This is probably the most complex and extraordinary surgery human beings have invented. We do hundreds here, and most people survive’.
A phlebotomist – ‘We need so many blood samples from you, but this is the big one’ (As she removes blood from my backside).
A researcher – ‘I would like to take some more blood samples’.
As well as travelling around to meet an assortment of specialists for ultra sound: all of whom require short interviews and often items to be signed.
And always, when you are in hospital: there is the daily round- as the doctors do the wards and come and see you in a convoy. In the hospital, it is a daily meeting which helps mark the day out.
After this, meetings are planned on a monthly basis. We plan them as events – going to London, staying in a hotel.
The Signing meeting. This was a key meeting which took about an hour and a half – to work through my consent forms for the surgery. A consultant surgeon (who, as it happens actually became my surgeon when I was rushed in a few months later) took us through the whole procedure, step by step, and carefully explaining various risks and pitfalls. I felt he had given me a lot of time, and felt that risky as it might be – it was only a little risky. Everard and I felt he had been very clear and it all helped a lot.
Allocated to Astrid- a wonderful doctor, who for a few months, I see regularly about my progress. We both, but particularly Everard, became attached to her good counselling, calm reassurance and sensible management. We even worried that we might have been taking up too much of her time!
An interlude: Uncertainty, change and illness
But very serious illness brings its own very special kinds of uncertainties. Once my ‘illness’ was identified in Santa Barbara, I fairly soon had a clear idea that my life as it was lived would never ever be quite the same again. It would become – and indeed was – seriously transformed. At least for a long while. Most writers on illness have sensed that it brings with it a radical reorganisation of time and life : John Donne wrote famously in 1624 that :‘daies and nights, so long, as that Nature her selfe shall seeme to be perverted, and to have put the longest day and the longest night, which should be six moneths asunder, into one naturall, unaturall day’ (Donne, 1941:31)
The bluntest of these changes, transformations, or disruptions came from my work: since I got tired very easily, had lost all energy, was often very sick and frequently lost my memory and could not think clearly, I was hardly fit for my work as a university lecturer. Sick leave led to early retirement, which in turn meant adjusting to a lower income (but at least I had one. Not so for those on unstable and low incomes). Significant too was the shift in my sense of time: I entered a new set of routines for each day. Sleep became more common; days turned into nights and nights became days. Much more time was spent in the bathroom; and indeed if I went out of the house much time was spent making sure I was near a bathroom. Food lost any social aspect and became more a limited necessary function. Being with other people exhausted me and slowly I became unconfident of my social skills. Some old friends just seemed to vanish. All my daily routines had to be reworked- and reworked again with each phase of the illness: there were adjustments to hospitals, to doctors, to friends, to walking, to going out of the house, to being mildly ill and being very badly ill. It is a well known cliché but it is so true: I lived with good days and bad days (the title of an important sociological study by Kathy Charmaz). And more than anything it shifted my sense of consciousness and being in the world. It is this which I want to try and ponder next.
I can start by saying that everything in my illness world changed, at least a little and often a lot. It was usually not exceptional or dramatic: it was myriad of minor things. But everything took on a different hue, a shifting texture, another feeling. My worlds of movement, clothing, hair, drinking, eating, sleeping, washing, talking, thinking, and feeling – all moved into a different key. The people I knew took on different characteristics. Places became different. Whoever I was before, I was not now. I was a new and changing body. I was a new world of feeling. My consciousness had shifted.
I can make a clear divide between the first major year of my illness when I was ‘still trying to do things’, and the later year when I was ‘waiting for the transplant’. In the first year, I did try to do things. Although on sick leave, I would go in to work on odd occasions – a Graduate Conference, the odd seminar, an occasional PhD student. I went to a family celebration. I would still try and do a little shopping sometimes. And I went to Santa Barbara for Christmas – and, though with the help of a lot of rest, some very dear friends, and using all our reward miles on a first class flight – we had a wonderful two weeks. I took friends and family to a show to celebrate (something or other!). We still entertained a little – and got entertained. But a lot of this was a bit precarious. For everything that I could do, there was a lot that had to be cancelled, postponed or refused. I was invited to speak in Taiwan, travel to Argentina, join a panel on European Human Rights, and so forth: all had to be turned down. Several of my favourite musicals were booked – and then others had to go in my place. (An art exhibition- on Hogarth- came and went during my transplant period’). So the social round is disrupted but at the same time there is an attempt to keep it going. I saw Guys and Dolls, but didn’t see Mack and Mable.
But once I was placed on the transplant list, there was a decided shift in pace.
Work changes. Most of my life, I suppose I have been a bit of a workaholic- I prefer to say that I have always been lucky enough to really enjoy my work. Illness meant my formal duties at the university had stopped as I eased my way into early, sick linked retirement. But I did have other work commitments – a textbook which needed regular revision, a journal to edit- which I kept on doing. They were useful for me in keeping alive the sense that I really was still doing something. I could not in fact do much. I did bits on good days, and I had a wonderful assistant. She would visit weekly and over long chats, a little work might be done. I learned again that things usually keep going because of the wonderful people behind the scenes of life that hold it all together.
I tried to read and even ‘to work a little’: but it was much harder than usual. I could do these things on really good days (but these days became less and less as I moved towards the surgery). I have always been a reader and I would guess that I have some several thousand books at home and work. Quite a library to draw upon – and that with Amazon.com being willing to send me (at a price) any book I wanted, I was not short of things to read (In hospital, that was a bit different). The trouble is reading requires concentration and energy, and these were in short supply. Ten minutes of reading and I could no longer concentrate. Since I have a butterfly mind, this does not matter too much. I could skip from book to book as I pleased. Still this was not a time for a deep reading.
I learned that keeping at some kind of work – however poorly- was good for my spirits. Oddly the major shock of retirement did not really hit me during this period (that came much later after the surgery). I had never planned to retire this early – never, ever thought of it. I loved my work too much. But now, suddenly and with no plans I had to retire – I was too ill to work properly. But I had no plans ahead, full stop. My life may indeed be coming to an end. Retirement was the least of my worries.
Resting changes. Good rest is an absolutely necessary feature of illness. If I used too much energy and did not rest enough, the illness would hit me hard very quickly. In the beginning I learned this the practical way- activity brings illness. I knew when I had to rest, and planned my day accordingly. A lot of little dozes punctuated the day, but the main rest came during the afternoon. I would start listening to a musical, doze off and wake up several hours later. This became a central feature of many days.
Everard would try to get me ‘out’, and on a good day I was also game. We live in an area near to beaches and countryside, and I started to appreciate – much more than I ever had during my thirty years living in this place- just what a lovely area it was. Slow careful beach strolls; beautiful little countryside churches and villages; drives through the flat lanes of Essex.
Thoughts change. The most critical thing of all was thinking; and being ill – whether at home, in a hospital bed, in a waiting room – leaves you endless hours and hours rolling by on your own with your thoughts. I suppose it might be possible to let this time just drift away. But for many people, like me I suppose, this is also a major time to think about many things. Some may be small and practical, and many will be to do with the disease itself (where is the bathroom, are my pills nearby, if I move will it hurt). But serious illness also brings with it serious view of life – to put it bluntly: this is the time to think about the meaning of life, and death. Very often serious illness takes you right up to this edge: at any point you may not be here at all. So just what is it all about? For me most of this thought was unspoken. But quietly over many hours I pondered what would happen when I die (since for me there is no after life, this became quite clear: that would be it), and as a link – just how should a life be lived? Did I indeed lead the life I should have? I don’t think I had seriously revisited such questions since my teenage years of mild existential angst; or since the death of my father in 1978. At that time I had read several very important books by Ernest Becker, The Denial of Death and Escape from Evil, which had – sort of – put death into its place for me. He had put the insignificance of all our little human lives into their proper place; told me of my fear of death and what I might be doing to transcend this (building hero systems seems to have been his answer if I recall it right) and he was implicitly critical of this.
Never mind. It was to things like this that my mind roamed. It was therapeutic and helpful. Shit happens. Life is for living. Get on with it. Everyday matters. Make the world a better place. Death is the end. Family, friends and love matter most. Make the most of it. Forgetting all the books and all the philosophers, I came to a rather simple and basic understanding of my life and death. Now that I am alive and living and seemingly quite well, I am glad I used this time to reflect. I felt I came to terms with death and life in a very funny sort of way. Whether I am prepared forever – or for my next death bed scene- I do not know, but I have certainly developed a curious interest in those silly little books of platitudinous and trite wisdoms of the ages ( the sort you often see at the sales counter in book shops- The Little Book of Calm, ‘Wise thoughts’ and the like). Who except the philosophers needs Plato and Aristotle when their wisdoms have been so distilled? (When I left the hospital after my surgery, I bought thirty such books and gave them to the nurses!)
Clothes change. What I wore started to change. Well of course this is so in hospital- they make you wear those ghastly surgical style gowns in those dreadful hospital colours (I had thought of buying myself my own personal one, maybe in some cool pink colour, but it did seem a bit flash!). And as I progressed, I found myself living in a world of pyjamas and dressing gowns (prior to this, for some forty years, I had always slept completely nude!). But it also shapes everyday life. I felt the cold – it comes with the illness. So I took to wearing corduroy and more cardigans and sweaters than I used to; and T shirts added another layer. I could not wear T shirts for much of my adult life – they seemed to accentuate my pot belly; but now I had lost this belly, and T shirts seemed very comfortable. I had for a number of years worn black – a trendy youthful shade for older people that well covered my fatness (or so I fooled myself). But now I found ‘blackness’ pulled me down- and I was better off in pinks and whites and bright blues. They lifted me. I also tried yellow – but that seemed to accentuate the jaundice! The very things I draped over my body changed in illness.
Eating and drinking changes. Well, obviously again, drink patterns had to change – and they did, dramatically. All that drinking, and the worlds of pubs, eating out and parties, came to an abrupt end. And the foods I could eat were limited- I became a salt bore as conversations on salt abounded around meals. We baked salt free bread and filled the kitchen with new smells. Endless foods – pates, crisps, instant foods, cheese – oh how I missed cheese- were cancelled from the kitchen. Soft drinks became experiments; and for all their well publicised faults, diet Pepsi and Coke became new friends! Diet tonic with lots of ice and lemon were so lovely too (though maybe too dangerously close to a nice gin and tonic?) And I started to make my own home made lemonade. In hospital, the world of food takes on yet another grain. The people who bring it around on the trollies are wonderful and are always ready for a smile and a chat. But the food they have to bring around is not always of the very best! Santa Barbara would certainly win the prize for worst hospital food, but then I was very ill and I was only there for a day. I could see that King’s was trying to widen the ethnic range; and on my ‘test visit’, I positively fell in love with their instant minestrone and chicken bean jerk (I think it was the salt in the dishes, but they did not seem to mind that in hospital!). At home, I found myself losing interest in food – and as a long time ‘foodie’ (I must have some 200 cookery books), this was quite a change. Drinking and eating assumes radically different meaning when you are sick.
Places change: my illness saw me inhabiting three major spaces. My ‘home world’ brought me to ‘my bed’ in my bedroom, ‘my big white chair in the window’ of the living room downstairs, and ‘my bathroom’ where a curious set of new arrangements emerged. Settling into each of these places meant I was not likely to move to another place for a good long while. Daily living was structured by these places – there was no rushing around here and there. Secondly, there was my ‘going out world’ , which slowly became a kind of treat to be engaged with on good days, when Everard would take me in the car to a nearby beach or wood and I could get out for a tiny stroll and some fresh air. Sometimes it would mean a journey to the hospital and this would include staying in a hotel overnight. Occasionally, I would dress up and go to see friends – but not for too long, since I soon tired. And finally, there was my ‘life on the ward world’. I spent around two and half months inside three different hospitals. I talk about this in some detail later.
Most noticeably, for the ill, the world centres on bathrooms. This is where you go to be routinely ill. Here you vomit, let your bowels out, pee profusely, feel extreme pain and nausea, bleed, and try to inspect and sort your body out with some kind of dignity and privacy. Largely on your own. But when you are ill, bathrooms can become difficult places to navigate. In hospitals, there is the long slow walk to the bathroom to find that someone already occupies it, and may do for the next half an hour. The bathroom might not be clean – in fact you never quite know what to expect. Will you be able to manoeuvre all the tubes and wires you carry? And of course they are always a bit basic- no home comforts here. Each bathroom has to be renegotiated – plumbing is never quite the same. And will there be enough toilet paper? In the outside world, you also have to keep your eye on the toilet – where will the next one be, and what will it be like? When I was ill in Santa Barbara, I would design my walks around public toilets and store toilets – suffering a lot from diarrhoea at that stage, it was important to have a ‘comfort zone’ (what a good word this turns out to be) every ten minutes or so! But back at home, the bathroom becomes a very special place. Everything takes a lot more time when you are ill, so spending time in the bathroom is a long and big deal. After my surgery, when I had to be very careful in my movements and had a drain attached to my body for three months, I had Everard nearby at all times- a fall could have been disastrous. It was a long and slow exercise – and I took to sitting in the bathroom in order to wash. I just had to allow a lot of time for all this. Toileting and bath-rooming takes up a lot of the business of living when you are ill. The world is slower and more precarious.
Rooms change. Sitting or lying in the one spot made me intimately familiar with the rooms I dwelled in. They take on different lives at different times of days – the early morning and its shifting lights, the afternoon sleeps and business, the night descending, and the long, long sleepless journey into day. Shadows change, different people come and go, and sounds roll along. And at times, these rooms drastically change: the hell hole of the intensive care, with its Blakeian art all over the walls and the mad people screaming. My living room at home – which looked so different, strange and un-homely when I was in one of my encephalopathic fits. So odd, because usually the room of my own was about as comfy and homely as anyone could ever wish for. It was generally a wonderful room to be ill in for most of the time. It made me happy. I could sit in my wonderful big white chair and flick on the DVD, and the music. I had books I could dip into for a few minutes at a time (my concentration was very poor). The wonderful post lady would bring me (usually nice) cards bearing good wishes But I did not move around much- the house I now lived in was not really the same one I had lived in for the past thirty years. I will talk more about this.
Walking changes. My whole body moved much more slowly through the world. As I got better, I became more aware of different styles of walking. At some moments, there is no chance of walking at all (when I found myself in intensive care). Then I had to go through a phase of actually having to learn – baby like- how to walk again. It is a very dangerous and precarious exercise- I could and did fall. A lot of energy is invested into just being able to walk to the end of a corridor. It is a slow and careful watching of every step. And an exhaustion by the end of it that means a wheelchair ride back to your room. There are long periods of very slow walking as you feel no energy. This is not normal walking, and it does not look normal. People have to go slowly around you. You feel their annoyance with you, even their anger and resentment. People in the non ill world are busy people rushing everywhere with high energy. This you cannot do. Indeed, it is one of the key things I noticed as I got better: my energetic walk came back. I jumped into a room rather than slithered around the corner. I was all the time getting ready to dance. Oh dance! How I have loved dancing for most of my life. As a little boy I wanted to be a tap dancing star. I still do. I missed my vocation. And whilst I was ill I could and did listen to a lot of dance music – from tap and musicals to romantic beat pop. Dance I could not, except in my soul! Nowadays, moving better, I am very aware of the ill as they move cautiously around in the outside world: they need looking out for, and given support. It is vulnerable to move slowly in a busy world.
People change. The world of faces and people starts to change dramatically with the illness. Most of the old networks start to crumble – friends from the pub, friends from work, and acquaintances in the street- start to disappear. Some new temporary networks appear – doctors, nurses, people concerned with health. And some people rise to the top of the friendship pile with glowing colours. Everard above all was with me day and night for every single day of my illness. Calm and unfussy, he was quite simply never ‘not there’. For well over two years, he was there as the key presence in my life at every moment. I sometimes think that he was more aware of my illness than I was. And even in my most dramatically ill moments – the encephalopathy, the illusions, and the surgery – I knew somewhere that he was there by my side. His centrality to my life could not be mistaken. I hope everybody has their Everard for their illness.
Every item of my daily life – big or small – came to take on a new shade and colour through my illness. And I think it is important to know this. It is the everyday ordinariness of being seriously ill. There is more to be said on all of this.
Activities change: A lot of the day can also be seen as ways of handling the illness. In hospitals this is clearly identifiable; the regimen of pills and observations is strictly observed and punctuates the day. Life is restricted. But at home, you live in the land of wide open spaces….there is- potentially- more flexibility.
I found that for each symptom there was a flurry of activities that were needed to deal with it. For example, sudden sickness would usually require me to be sick not just the once but a good few times; and the last time- possibly an hour or two later – would be clearly identifiable because I would feel there was absolutely nothing left in me to bring up. Then I needed about four to five hours of complete rest. If I had the cramps in bed- excruciating pain- I had to get up and do a kind of yoga bend to get rid of it. Not always easy. To avoid encephalitic attacks, I had to make sure that the levels of lactulose to be taken were always foremost in my mind. Diabetic injections and monitoring bring their own rituals of time, injections, blood sampling, minor bleeding, note taking and ultimate eating. Being on drips or catheters leads to a whole series of manoeuvres in trying to move the body.
Getting by on the ‘bad days’; filling up the ‘good days’
I suspect many seriously ill people soon come to divide their life into the ‘good days’ and the ‘bad days’. On good days, the body tells you can do a few things: on a bad day, simply forget it and just get through the day alive! The bad days are fairly simple: I either did not know about them because I was in a kind of a coma trance; or else all I could do was ‘be ill’: vomiting, running and sitting on the toilet, dealing with pain (which in my case always seemed to be quite mild) and just plain sleeping.
My good days were organised around ‘mini projects’, as I liked to call them. I came to be aware that these projects could be disrupted at any moment – when a ‘bad day’ might arrive at a lunch time and I would have to go to bed. But within that confine I could sort of schedule a day. Everything was slow and I learnt not to expect much. But my little projects could be divided into listening to music, reading a little, watching DVD’s, having long rests, seeing friends, doing some work, and thinking – quite a lot. This is how I passed my day – and in some ways it is no different from how I pass my days when I am not ill. But the pacing, the content, the certainty have all now shifted. What I did not do on these days was ‘give up’. I could not achieve much; I had to deal with the un-creativity and the uncertainty of it all; it was all ‘passing time’ – waiting for the big day of the surgery. But illness is always a round of doing things. It is a world that dramatically changes, is deeply uncertain, but which is never passive.
Life, as they sometimes say, goes on.
2007: The Year of Surgery and Recovery
Getting very ill
I start the New Year being very ill indeed: I have a three day bout of encephalopathy. On New Year’s day, I went to a little party at a neighbour’s, and all seemed reasonably well. Somebody asked if I had been on holiday as I had such a good tan, and Everard replied speedily that the tan was jaundice. I get home a couple of hours later and snooze. And that is about it. I vaguely recall Everard saying I should go to bed; I can distantly vision an old friend by my bedside; I seemed to be spending an awful lot of time on the loo. Was it day or night? Some two days later I learnt that I was just bringing my worst bout of encephalopathy to an end.
February 14th: Dental Surgery – I have a wisdom tooth removed
February 18th: The (Unexpected) Call. An ambulance comes. I am whisked away to King’s.
The Transplant Moment
The transplant stage is short but shocking. Here the patient has to make ‘a rush to hospital’ – the phone call may have come at an odd time (in the middle of the night – in fact this seems very common!), and may have been very unsuspected (just when I had been told the surgery was not likely to be for at least another six to seven months, the call comes a few weeks later). The journey – if in an ambulance, as often happens- may entail moments of high drama: sirens ringing and lights flashing. At the hospital, there was a period ‘waiting to see’ if the surgery will actually take place; it may not –in many cases there is no matching of liver and patient and they have to return home. In my case, they did match and I was ‘on’. Finally, and at the heart of the whole process, there is ‘the surgical moment’. Here the liver of a ‘cadaver’ is removed and transplanted into the patient – a medically difficult though increasingly common procedure that can last from six to twelve hours.
DATES???February 18th (Sunday) The Call to Kings at 3.45am, and the surgery which starts around 6.00pm that day.
February 19-22nd Intensive care, and hallucinations (Monday-Thursday)
February 23- 6th March A room of my own in Todd
March 6th-15th On the ward (with three other men)
The call to come to the hospital came at 3.45 am on Sunday February 4th, 2007. Given the length of the waiting list, the hospital had warned us that the transplant was unlikely to happen till at least the summer. But here, at 3.45 am, six months early, was a phone call – shrilly in the middle of the night. I was, as I often am, half awake; but as soon as I heard the ring by our bedside, I said: ‘this is it. That’s the hospital’. Everard, my partner of thirty years, picked up the phone. And it was indeed the hospital. The ambulance was to arrive in half an hour. I had just enough time for a shower. My stomach turned over and my heart missed a beat.
I was up and in the shower. Everard was up and rapidly moving around – our pre-packed bag appeared, and a bottle of water was found for travel. A few new items gathered – I chose a book I had been reading on the musical to go with the ones pre-elected months ago and already packed. I gathered up a little cash. Everard warned me not to be upset if it was a false alarm – they often are he said. We might get to the hospital and they may then find the planned liver was not suitable in some way or another. The house was checked; a check list was checked; more checks! We were very quick and very calm. It was very dark and very cold outside. We were ready. Big moments. And for a last few minutes we sat in silence near the front door. We knew that phone call had changed our lives.
Cheerful paramedics arrived soon. A thin man, Gus, a little younger than us, loved his job and had been doing it for over thirty years. A cheerful tough looking young woman was his driver. How the job had changed, Gus said. Once he could not apply medications or conduct key procedures: now he was trained to do around 250 pain reducing, life saving activities! He was a good companion as he told stories and joked on our fast, bell ringing, junction jumping ambulance to London. I thought what a great life story he had to tell of the entire near death and crisis incidents he had lived through; and what a deeply satisfying job it must really be. (I do know my ER and watch it regularly; but it is US based. I have since found several books which tell such stories: see Mark Brown’s Emergency! (2004, 2008) and his follow up book A Paramedics Life (2007)).
We were at the hospital within an hour – not bad for a 60 mile journey. Roads on a Sunday morning are easy to move along. I had a few butterflies but no panics. Everard kept a calm look on! At the hospital we arrived in A&E. To our surprise there are only a couple of people there. This is a major London hospital serving a huge area and it was 5.00 am after a Saturday night. It is modernised Victoriana. I guess emergencies are dealt with quickly here. If we had been there a couple of hours earlier, the scene would have probably overwhelmed us. The paramedics wheeled us through winding corridors and lifts to the Liver Unit which was to be my home for the next month.
I was soon settled in a room of my own where an array of nurses and doctors visited. They were inspecting the liver. It may not be suitable. I should get ready though. Re-shower. No eating. Lots of tests. Everard was there all the time, and made a few rings to family and friends (who then created an international network of information: what did happen before mobiles?). Some London friends –Pamela and Malcolm – came to visit after a lovely lunch party, and were there to support Everard. (He was to stay with them for the length of my hospital stay – we had planned this months ago as they lived near to the hospital). After quite a wait, ten hours maybe, I am told that ‘my donor’ – that kind stranger who had just died and who was now going to hopefully let me live – had given a wonderful liver. The doctor described the liver and told me that it was such a very healthy one – which made me wonder if they would ever use unhealthy ones! And also made me think of the tragedy of a healthy person now dead. It would be a few hours now till they could operate – at least late afternoon. Quite a long wait, I thought (but then it is quite a procedure to remove the liver in the first place). Time to panic? No: time to unwind and relax. It was to be what they call a split liver transplant – which means that I would get two thirds of the donor’s liver and a baby would get the other third. Complex things were going on away from my sight – someone had died, an organ was being removed, grief must abound, and doctors, nurses and teams of others were working diligently all around the clock to turn one family’s tragedy into another’s joy. Life is so tragic and so wonderful – and all at the same time.
At around 5.00, a team of six came and introduced themselves to me. They were all so young and they inspired enormous confidence in me as they each calmly and kindly told me who they were, what their role was to be and what was going to happen. Quietly I was put into a gentle sleep; one moment they were all talking… the next moment, I awoke in intensive care. And that was all I knew. I am told that Everard wheeled me in to the operating ante chamber; and left with a tear in his eye. That the surgery took about eight hours. That I was not conscious again for a day.
Post-transplant: Hospital and home
Surgery done, life sort of restarts in the Intensive Care Unit (ICU). For a short while, life is ‘intensively and indomitably under risk’ . Scarcely aware of any of it, for four days I was more or less out of the world and suffered from extreme hallucinations. I was not really forwarded of this, and yet I have subsequently heard that this is quite common. I think the people around me were quite disturbed by this – and I was almost out of my head with anxiety, fear and worry: Never mind the actual illness and its recovery at this stage: I was out of my head. The first thing I did when I got home (about four weeks later) was to write down some of these hallucinations – I had about ten. Below is just one of these scribblings:
Intensive care: Hallucinations- a bomb had landed……and a disco starts
“I seem to remember being wheeled into the intensive care unit (ICU) – past a large discotheque room and into a ward dressed with draped murals by William Blake where hideously unpleasant music was orchestrating Blake’s monstrous paintings. I had indeed entered the ICU and my mind was playing little tricks. It could be said that under extreme medication I was experiencing hallucinations. And these continued for nearly a week. I was all wired up with nowhere to go, a little cyborged, shrinkled old man. Every orifice of my body was plugged and I had wires everywhere.
My surgery had taken around ten hours and I had been taken immediately to the Intensive Care Unit, where I spent four days recovering from surgery that must have profoundly shaken my body. Apart from the intricate and complex manipulation of organs, arteries and tissues, there are major problems of keeping the blood flowing and balancing my breathing and brain function. I had been heavily drugged as well as spectacularly carved up. When I came round, I had a wonderful nurse by my side, tubes everywhere, and of course Everard. But things soon turned funny. Very funny, peculiar……
My luck! Whilst in my surgery, the hospital had been bombed. There were flames everywhere, ruined buildings, screaming and crying, and people were moving around with huge scars, burning before my eyes, stumbling in flames, zombie like. Smoke was dense, everywhere :it was hard to see very much really. Was I actually dead in the midst of all this chaos? Was this a terrorist attack? The dead bodies were everywhere.
Saved! I am in a ward with a large DJ platform from which music could be played. Am I alive? I see wires and bottles everywhere attached to my body. Have I become a machine – is this being a cyborg? – what of my body was me? My mouth and my throat seem plugged, and I couldn’t move or speak. I was told to press a button if I was in pain – and I kept pressing, and pressing, and pressing: until they took it away from me.
I heard strange voices and saw terrible visions. There was an old Irish woman screaming about the poor, and desperately crying to ‘let me die’ . There were odd noises coming from the machines that surrounded me: drips, beepers, mini-alarms – all uniting in a bizarre kind of minimalist symphony. There was an angry singer who chanted about being mad, over and over and over again: it was right groaning din. But just as I had heard all this, it seemed to repeat itself, exactly the same, all over again. And again. And again. It was like a soundtrack being played to drive me mad! I asked the nurse if she heard it. And was it being repeated over and over again? ‘If this was music’, I said,’ it did not seem appropriate for an intensive care unit? Couldn’t something jollier be played?’ She was very cautious in her reply. As I heard it all again, I asked her again – and probed if this was a CD playing. These odd sounds were not actually in the ward but coming from canned music, very strange music. Am I right? ‘ Then she said ‘yes, that it was a CD’. Well, I asked, why repeat the same CD over and over again? Why place a CD that was so gloomy in the Intensive Care Unit? Come to that, why play music at all? Could they please stop it?
The nurse came back and told me she had made a formal complaint. She was a wonderful Asian nurse –my angel. But other nurses slowly came to her: they abused her and attacked her for making the complaint. Meanwhile the ‘music’ continued. Young doctors gathered around my bed and seemed to say that I should be more tolerant and that there was nothing wrong with this choice of music! More senior doctors came along and moved them over to the DJ turntable – where it was revealed that this disc had been repeatedly played since the previous Christmas! It was clearly a conspiracy to make patients mad- and they had been doing it for months. I am glad I had reported it and no wonder they were all on their guard. This could be a scandal. The young doctors were told to remove the CD and tape – remove the evidence! They listened to each track with some attentiveness to remove the offending tunes. To me they were all offending. The problems now was that most of the nurses and the doctors saw me as a trouble maker. I did not speak much about it. But strange looks, run away comments, and avoidance is what I found. Trouble is, as I lay there worrying about it, I recalled a colleague of mine at my university who once got his MA students (in a mental health care course) to make up such a disc /tape for assessment. Could he be involved? Was it all a mad plot?
Just what do I make of all this now, some months later and with some time to reflect? To start with I would say that this was the most worrying and disturbing time that I had experienced from the whole illness experience. I think this is because it is the only time I truly felt in danger, surrounded by fear, unhappy and out of control. My illness generally had not been a bad time: serious as I knew it was, I had kept cheerful, felt loved, made my peace with possible death and came to terms with whatever life I had and was to have. Contrary to all expectations, being seriously ill was not such a bad time. But the hallucinations – although I did not know that they were this at the time of course, for me it was stark reality- were another matter.
Experientially, I was under siege. It only lasted for about five or six days- short in the grand scheme of things. But it was a time when I hardly knew where I was or what I was. Hospitals had rooms that could become detached and move around the world. One day I was in the local countryside, and another outside a garage and tube station at Turnpike Lane, London. Strange, detachable, snake like hospital rooms were weaving their way around the world. Doctors and nurses could not be trusted: they hated me – except for a few kind ones, who themselves were being persecuted by others for being nice to me! People were doing all kinds of strange things to me. Indeed overall they seemed to be trying to make me lose my mind. They were driving me mad by playing strange music, drawing horrendous pictures on the walls, forcing me on to unbearable machines, constantly drugging me up, and watching me all the time. Just watching. Never not there. And my body- who is this I am? More like a machine – all these wires and tubes blocking my every orifice, making me immobile, trapped and wired and constrained. People moving around in the ghostly distance. People in nearby beds plotting against me, saying hateful things. Younger doctors – knowing I was gay, or old, or something- seeming to sneer at me (once, one more senior seeming doctor put them in their place, thankfully). Nurses being nasty to me and my nurse- who was the wonderful saviour in the midst of all this. Calm, peaceful, totally caring, Thai I think. An angel of mercy. She seemed devoted to me and as a result she would have other nurses coming to her and telling her that she would be sacked if she looked after me too well. I have often wondered what happened to her? Was she sacked? I think not, but it was a fear I had then.
Four weeks of Hospital life
Intensive care and hallucinations are soon left behind. .I was moved to a specialist ward where ‘monitoring and evaluation’ becomes a key theme as the person faces a number of ‘critical medical moments’ as they make a gradual return to a normal life. This process can continue for a long time (time is a key issue in all this as we shall see later).
The kindness of strangers
Nursing work is so hard. Paid a pittance, they are the angels of shit work. Most of the nurses I encountered showed a cheerful gentle kindness to me whilst at the same time doing some of the most unpleasant work: they have to deal with failing bodies all the time – and all the frailties and messes they generate. They are literally shit workers: they give me enemas, bring me bed pans, rush to my aid in lavatorial crises, wash and wipe my bum, and are continually charged with emptying all the products of my sick body. But they have so many other things to do: the administering of medicines, the constant ‘testing’ of the bodies, the provisions of emotional support, the keeping of a kind but orderly place. And most of all they have to deal with pressure, crisis and the potential for chaos, disorder and even death at every moment of their work. Each individual nurse – and indeed the nursing assistants who do all these things these days as well, and have to make the beds! – brings their own individual touch. Some are wonderfully noisy and raucous; others move and smile like angels of kindness. I had one wonderful transgender nurse – as down to earth as you need to be; and one South East Asian nurse who seemed to be on some kind of spiritual journey to look after me and save me (not my soul, although she may have wanted that too, but my body) . Some crack many jokes; others seem seriously learning the job. Despite all its difficulties, I am sure nursing brings its own many rewards. I wrote this little bit shortly after leaving the hospital – in praise of them all!
As I lie in my bed at night, after all the noise and bustle of a busy day on the ward, I am just amazed at how all this has come to be. A day of such dedicated, caring people rushing around as lovingly and as gently as they can so that I may live. The trollies and the pills start clanking around at 6.00, but the nurses smile and try to start your day well. They return soon with a bunch of measurements to be done- blood pressure, temperatures, and sugar levels. Then that lovely Nigerian man- the vampire I call him – comes for my blood. We always exchange a few jokey remarks. With gentle ease, that quiet calming and smiling woman comes to my bedside, asking what I would like for my breakfast. And so the day will just roll on. Nurses, cleaners, doctors in a hard working but merry little troupe; physiotherapists, phlebotomists, dieticians, pharmacists, a woman, a man who comes round selling the newspapers, a hairdresser wanting to know if I need my hair done, the porters who will wheel me to far away places for yet more tests: all arrive, smile, do their duties, and leave. The whole place drips with a loving care and cheerfulness – little breakdowns happen – but the overall overarching concern of everyone seems to me to be to help little me! I am overwhelmed with human kindness. They are civil; they care.
I must be careful. No institution is perfect. Blemishes are everywhere- as they are everywhere in life. I am saddened by those who seem to want perfection in everything and who constantly moan about the smallest of grievances. Of course I could complain of some things – but they have a hard job and my moans will not (usually) help. There again, hospitals differ. At King’s College Hospital I found little to complain of. At my local hospital, I could have found many. I do not want to say that all is perfect. But at the same time, the groaners need a strong counter story. There are millions of people out there who care and who hold the world together. And we in the hospital beds really do know their care matters.
March 1st .
The shower of my life
There is an entry in my diary in big letters (if in a very shaky hand) on Thursday March 1st, which simply says ‘Shower’. I guess it had been a good week and a half since I had properly washed. Before that it had all been damp flannels and little wipes. And I remember my first shower vividly. It was the big achievement of one particular morning. I had to get prepared; get clothes and towels and soaps ready – a lot of fiddling for half an hour! Then I had to get a nurse to help me- always hard, as they are so busy with endless priorities. I had to get out of the bed, move slowly on a frame to make it to the shower, be assisted getting in, and then sit under the water flow. I had to be near to the alarm. And I had a drain and drip that needed constant attention. It was a mammoth task and it had to all be taken slowly and carefully. It was indeed a morning’s work and I felt exhausted after it. Still it was a crowning achievement and I felt so clean , so pleased , as the water poured over me. Putting it together. Getting back to life. Wonderful. Hospital life is like that: crowning glory in the little things of everyday life.
Living with tubes and other appendages
It is not at all uncommon these days to live with a tube in or on your body. But in hospital, they are manifestly and visibly suspended all around you. And some illnesses – of which a colostomy patient is probably the most dramatic- have to live daily with tubes. In my case, after the surgery the doctors were concerned about the functioning of my bile duct: a tube had been inserted and I had to live with it for about four months (it was put in during my surgery on February 18th and removed finally on 23rd May). Of course, an external tube and bag soon becomes part of your body sense: you move and sit carefully to avoid dropping it – which would simultaneously wrench your wounds and create an embarrassing mess. It gets incorporated into just who you are. Your clothes have to be managed: to leave it visible may be easier but more threatening to everyday encounters; to hide it creates a loss of control over what might be going on beneath your clothes. We joked in the hospital (with a wonderful transgender nurse) about creating a new market in stylish diamante drip bags for the elegant ill! The bag also has to be emptied, cleaned, replaced from time to time: daily inspections and maintenance rituals become part of your life. Unwelcome as it is, it soon becomes part of the new daily habits.
Being in a modern hospital means living amongst machines and medications. I can scarcely recall any time when I was not on a drip hanging by my bedside – and sometimes a few ; and medications were always provided through the daily round. Lying there I would ponder just how my illness was indeed dependent on the social workings of medical science- of Big Pharma ( the world’s largest and most profitable industry) and the technological explosion (from the smallest drip to the most expensive machine, it all costs a lot of money).
We are used to some of these things: tongue depressors, bedpans, elastic bandages, examination gloves, and hand-held surgical instruments are common place. Others such as non-invasive x-ray machines we have got quite used to. But there is now a world of hi tech machines to be found in hospitals that for me at any rate were a whole new world of experience. Before my illness I had not encountered any of them before – except of course in the ubiquitous TV hospital soap. Now I was being put under constant surveillance by them. This is the world which moves lightly from replacement heart valves to silicone gel-filled breast implants; from implanted cerebrellar stimulators to implantable pacemaker pulse generators.
Here is a little list of machines and procedures I encountered for the first time:
- The ultra sound was by far the most common of medical examinations. It greeted me on my first arrival at Santa Barbara and it was the last procedure I had when I left King’s with my bile duct drip removed. It is a simple ‘sonic’ procedure. Lie down, expose your stomach, have cold cream squirted all over it, and then relax whilst a probe is rubbed all over the area and the monitor screen observed. In some ways, this is for me quite a sensuous act: the cream is reminiscent of sexual lubricants, the rubbing is gentle, there is a kind of calm. In prenatal care it has become a commonplace. Ultrasound has been used to image the human body now for at least 50 years. It is one of the most widely used diagnostic tools in modern medicine. The technology is relatively inexpensive and portable, especially when compared with some of the others like MRI (magnetic resonance imaging) and CT (computed topography). I believe ultrasound poses no known risks to the patient. Only a technophobe would worry about it.
- The endoscopy was a different matter. I had this five times and it was always nasty. This is a procedure in which a tube is put down your throat and oesophagus to explore the lower regions of your body. A lighted camera is attached so the results can be seen on a screen nearby. Sometimes a sample of tissue can also be taken. A gentle mouth anaesthetic is given to prevent much pain, as the tube is pushed down. But the whole experience was deeply unpleasant for me. You gag, and gag, and gag. It depends a lot on the doctor who does it. At King’s it went smoothly; at the local hospital it went much worse – not least because on the first occasion the doctor greeted me by calling me ‘The Alcoholic Professor”. I did not need that kind of bedside manner! It also seemed to take forever at the local hospital- at King’s they seemed to know that from the victim’s view, speed is the essence. The less gagging, the better. I always flinched when they told me I was due to have this procedure.
- The X Ray was also quite common, but it has been in use for much of my life and it held no surprises. It has become a very routine part of western medicine – as indeed all the other procedures have become over the past couple of decades. Most commonly I had these to check my chest and lung functioning – which always seemed to be good and posed no problems. It was all very routine, though I never especially liked it because it always seemed to involve a lot of hanging around in corridors in wheelchairs for longish periods of times! And of course it is dangerous: since 2005, I believe X-rays have been listed as a carcinogen by the U.S. government.
- But traditional old fashioned plain X-rays have little value in the imaging of soft tissues such as brain or muscle. For this, other machines and techniques were used. Here I entered science fiction as I encountered the CAT (or CT) scan, and the MRI. One is computed axial topography and the other is magnetic resonance imaging. They both seem a bit like each other. Of course, I had seen it on hospital programmes on television. But now here I was being wheeled into a large room where I was confronted with a huge tunnel like machine. After various preparations, you are made to lie on this tunnel which sucks you in (partially or wholly) and then rumbles and make noises all around. You are all alone with your own thoughts. And you definitely feel you have arrived in the space age. Whatever else it is- and in my experience it is not at all painful, it is quite existentially shocking. Are you on this world or not? Again, I suppose you can get used to it. The people who performed it were certainly very nice.
- The intravenous cholangiogram (IVC) is another x-ray procedure – it was used to look at the working of my bile ducts around the the liver: to identify other causes of obstruction to the flow of bile. In my case they found a slight narrowing of the bile ducts which restricted the normal flow of bile (aspirins – to thin the blood flow- seemed to be the remedy!). An IVC requires that an iodine-containing dye is injected intravenously into the blood. It did not show up though on the surface of my skin!!! Fairly quickly, the dye is removed from blood by the liver which excretes it into the bile. It shows up and marks out the passage of the blood vessels. Again, it is a world of big machines but no real threats.
I had other tests but these were at the core.
….. and everybody around them works to keep the life going.
The ‘Getting back to normal’ phase
Although the monitoring and care of transplant patients is life long (with routine medications and hospital visits for the rest of a life), for many there comes a time when they just leave the experience behind. ‘Everything becomes normal’, again. For some this is not possible. They may remain with ‘transplant problems’ for a long while; some may well turn the experience into a ‘transplant life-style’.
The ‘Home and recuperation’ Phase: Living with a Bile Drain
15th March Return home. GP and nurse visit the following day.
For about three months I rested at home and made a good recovery. It was hard at first: I was still seriously recovering, my wounds hurt, and I had trouble moving and was in some pain. People had to be avoided for three months as my immune system was very weak. And then I had a tube and a bag (the bile drain) attached to me: movements, sitting, toilet, sleeping – all became cumbersome. Nurses visited three times a week to change my dressings and check on me – ten different faces, but all equally kind and caring. What a wonderful profession nursing is. And once a week, the hospital sent an ambulance or taxi to take me to the hospital for my next check up. This was a full day of activity which left me quite exhausted. But slowly, bit by bit, it was coming together. Everard would take me for a short gentle walk on the beach. Movement was returning. Rest and recovery
Most significant here are the weekly meetings at the hospital – an ambulance or taxi would call around 10.00am and return us in the mid evening – usually around 7.00pm. These lasted for around three months. I had to stay away from crowds, because of the fear of infection; so the hospital provided this transport. And at each weekly meeting, I saw one or other of the team who checked my progress, organised various tests and finely tuned my medications.
Meanwhile, for three months, nurses also visited three times a week for about half and hour and checked my dressings, bile duct bag and diabetes. There were 50 ‘meetings’ alone in this period. Thye came in the late morning- a time that suited me – and through this gave me a clear structure for the day. Preparing for them became a major event that I needed to be ready for; afterwards I could rest.
Removing the Bile Drain
Return to ward in May (Mon 21st-Wed 23rd) to have my cholangiogram and bile duct bag removed. I had an immediate sense of being welcomed back, and found myself in a single room off a larger ward – all men. Older men looking a bit like I had looked were being tested; younger men seemingly more articulate and with more complicated stories to tell. Apart from my ‘bag’, I looked fairly normal and when asked the standard list of health questions – a long ritual at the start of every hospital entry- I actually felt pretty good. There no longer seemed much wrong with me. But within an hour, I was on drips again – restricting my movements; on Tuesday I was being wheeled around for various tests; finally, in a very simple procedure, the bag was removed. I was free again!
The removal of the bag was a major event. For nearly four months my every body movement had been shaped by this bag. How you sit, and sleep, and shit – all are shaped by its omnipresent dangling and the fear that the bag may drop, split or break. Now it was gone.
Some diary notes
21st May Back to hospital for three days to remove bile duct drain. On the 26th of May, we go for lunch at Steve and Phil’s and during this week, I write in my diary:
‘And somewhere around here my old self returned, said hello to my new liver, and decided to stay…. It was energy, a voice, a shift in my sense of longevity. Once life was on loan, now it was here – and maybe for quite a long while’.
I wrote a little later in a diary entry (November 2007):
Somewhere back in late June and early July – about four months after my surgery, and a few days after my bile tube was removed during a short hospital stay- my old self returned. But, and this is very important, it was a renewed, revitalised, replenished and utterly joyful self. I was starting on a period of life – that lasted….. – in which my whole self was lifted on to a higher plane. I felt on a high all the time; everything was positive and looked good; I was endlessly cheerful. Things that used to confuse me could now be seen clearly. Problems that might have nagged me were now opportunities. Bad moments of any kind could be washed over with good news. I was on a permanent high. Maybe I was manic. What I was like to be with, heaven only knows.
On further reflection two major changes had taken place through my body. The removal of the bag had served as a physical and symbolic event of a new mode of living with my body. I could now walk normally again, sleep normally, and deep down start to forget about the bag (actually it takes quite a while to forget the psychic feelings around it). Form this I started to get new ways of feeling myself around the world, It was radically re-formed back to the world (the non sick world) that I had known most of my life. The sheer delight of walking, sitting and sleeping without being constantly – if dimly aware of the bag – was liberation indeed. But more: at roughly the same time, my energy and my voice returned to me. I seemed to have had a full scale bodily return – a kind of rush of energy, vitality, voice was suddenly and without warning returned to me. My tired old, sick and slow body had been revitalized to its former glory. I had watched and experienced the making of a new body- or at least, an old one rediscovered.
The ‘Getting Back to Normal’ Phase
28th May An entry actually appears in my diary which says in large print across the whole week- ‘GETTING BACK TO ‘NORMAL’? My diary entries suddenly come alive again: there are visits, a lunch with friends in Dedham, a slow walk around the village. The following week sees a note on ‘University’ (June 4th), a clear marker that I was on the return. And compared with the rest of the year, it suddenly looks much cluttered. And by mid June, I can go the annual Department Dinner and signs of work picking up.
August 7th Trips to the outside world restart! I go to my brothers… A clear landmark now that I can do a little travel.
Becoming Normal – all over again
October 1st I officially announced to myself that I was now out of the sick role. It was time to get back to life which is no longer being dominated by the illness. Of course I would have to go carefully, keep in touch with the doctors and take medications for the rest of my life. Of course, I was going to join the huge massively expanding ‘remission society’ ( a term I had encountered in sociology which captures the millions of people who now wander the world looking healthy but who ‘behind the scenes’ remain on all kinds of medical regimens, from diabetic treatments to pace making observations). My life would from hereafter always be haunted by the ‘transplant gaze’ in many ways. But I was out of the ‘total life experience of sickness’ and had returned to a version of normal life. I announced this clearly and proudly to my self on the first of October – and we went to see the Magic Flute in London to celebrate. Later that week I was to give an opening lecture to newly arrived graduate students. I felt well and truly back in the world. (I am a firm believer in self labelling and self rituals for various reasons linked to my intellectual work as a labelling theorist!).
October – December: Return to a little informal teaching in my retirement; and write every day for a couple of hours about the experiences of illness as a kind of therapy.
November 3rd 2007 (full entry)
“ Somewhere back in late June and early July – about four months after my surgery, and a few days after my bile tube was removed during a short hospital stay- my old self returned. But, and this is very important, it was a renewed, revitalised, replenished and utterly joyful self. I was starting on a period of life – that is still lasting- in which my whole self was lifted on to a higher plane. I felt on a high all the time; everything was positive and looked good; I was endlessly cheerful. Things that used to confuse me could now be seen clearly. Problems that might have nagged me were now opportunities. Bad moments of any kind could be washed over with good news. I was intoxicated with my transplant. Maybe I was manic. What I was like to be with, heaven only knows.
I am talking a little on this day as if this may now be in the past tense. I feel ambivalent about this. I have just had the most joyful four months of my life and I would hardly want this to stop. I have thought on a few occasions that this just might be a honeymoon period; and indeed that nobody could really live like this all the time. Indeed, it could be dangerous and unhealthy to be quite so positive and cheerful as well as being an irritant to many. Maybe a better balance might, as usual, be needed. Time will tell. But the past two days have been a little pause for thought: the general joie de vivre and the calm of mind have been ever so gently disrupted. I have felt a little tenser.
And then one utterly minor incident left me reeling. I had to wait one hour in a shop to purchase a computer. The tills seemed to be slow that morning, and I was moved to four different sales points. I had to wait and wait, for one reason or the other. And an hour passed! I was easy about this for half an hour, but started to get a little bit agitated afterwards – still keeping a cheerful cool. And then it just suddenly snapped and I let out a deluge of critical comment. I have always known that beneath my calm and cheerful exteriors lurks an utterly critical self: I just keep it covered up most of the time! I can think of quite a few times in my life I have done this. Anyway, my criticism made me feel so bad that only a letter of apology to the sales assistant would do. And I felt something had snapped.
I looked around my life a little and then pondered if my joy of the past few months was now coming to an end. I will wait and see. Certainly within a few days I went down with flu like virus, and I seemed to be growing discontented, more muddled, slightly depressed, and potentially angry about quite a few things (I make a note on by 14th November, 2007).
But even if it does, I suspect changes will only be matters of degree. There are really major reasons why I should be experiencing this joy. Most obviously, my life has been saved. Where I thought I might have died, now I see life as a second chance. Grab life and live it. Seize the day. Enjoy each day as if it may be your last. These are platitudes long known about, but they take on a new meaning and power when you have just missed death and know too it could strike again at any moment. But more than this I have been given a very special gift: the liver of someone else who had lived but who had died. In my case, this was the liver of an eighteen year old woman who had been training to be a nurse. What tragedy this must have been to others; but in this tragedy, my life was saved. I had every duty to lead a positive life – not just for myself, but for her. She would always be with me, and I would not want her to be let down.”
An odd, but significant, reflection.
Life Ever After…….?
CLOSING THOUGHTS: DRINK AND DEATH
Thoughts about alcohol
Each illness linked to transplant procedures will bring along a range of more specific adjustments and repertoires. Kidney issues may have brought me the social worlds of dialysis: heart transplantations will commonly have meant experiencing the problems associated with heart disease or heart attack. Cirrhosis of the liver may bring ascites, encephalopathy, jaundice, itching, nausea, diarrhoea. Common too are the problems associated with heavy alcohol use – often captured as ‘alcoholic’.
For some transplant patients, problems of alcohol loom large. Liver transplant procedures will always require giving up alcohol – it is a requirement of both surgery, and subsequent care management. And it seems to me to be a very reasonable requirement. There are many pathways into cirrhosis, but if its direct cause can be linked with excess alcohol, it does not take much to see that this minimally has to be stopped.
But for many this may not be easy. In my case, as it happens, and for reasons I now want to ponder a little, it was easy. My story can be told simply. On the night I was diagnosed in Santa Barbara. I was told that I would have to give up drink. On that very night, I said to myself in a loud and declaratory manner (with tones of Scarlet O’Hara in Gone with the Wind), ‘I will never, ever drink anything alcoholic ever, ever again, ever’. It was an absolute with no room for any kind of negotiation, ever. And from that vow on my own in the hospital bed to this day, I have never touched a drop of alcohol in any form. Curiously, I can only really say that it was not hard to do. I just stopped. It was total, absolute, unswerving. I gave myself no choices or room for manoeuvre around it. It was a one hundred per cent, non-negotiable new fact of my life. If I wanted to live, stopping alcohol in any of its forms was an absolute requirement. And so I lectured myself in a dramatic fashion. As far as I can recall, from that moment on I have no further desire to touch even the smallest drink: indeed my most common response is one of nausea at the smell of alcohol. If I did experience the classically labelled ‘withdrawal symptoms’ then they must have been so bound up with my more general cirrhosis symptomology that I could not detect them.
This had to have been a critical turning point in my illness trajectory. For me it was sudden and absolute: but I am aware that for many this may become a long processual part of the illness career – giving up drink may take months, or years, and the pathways to my recovery may be cluttered with counselling, placebos, clinics, self help groups – and relapses. There is a widely held sickness model of alcoholism which has detailed all this. It truly does seem very difficult to many people. I have to say at this stage that it is a model of conduct that I have long been deeply suspicious about. The classic AA model might simply work because people come together in groups for strong support and engage in rituals of self declaration. Whether there is deep down a sickness really at work is quite another matter. I can see the power of labelling; and in a way this was the path that I followed. I labelled myself as a person who would never ever drink again. And I looked to friends for support in not doing this.
Hanging around with friends who might encourage me to drink would be to like hanging around death: with people who clearly were not really friends. So patterns of behaviour had to be changed, immediately and forthrightly. If I wanted to live, going routinely to bars and pubs had – for the time being anyway – to be stopped. One day I could return (and I have to a little extent) to drink my tonic waters and diet cokes. But for that key moment: avoid, avoid, avoid was my golden rule. I started to discover that there were vast aisles in supermarkets devoted to soft drinks: I really never noticed them before!
Many friends supported me in this. In fact, I have noticed over the past few years that many of my old drinking friends do not even seem to have a glass of wine in front of me. I encourage them now to drink – as it no longer remotely bothers me – but they seem to have slowed down or given up (some have commented both that I had been a warning to them, and that growing older brings this anyway!).
At the very heart of my giving up alcohol was my life partner Everard’s response. One day after my personal abstinence decision, he followed suit. He gave up drink in all its forms for life. Together we entered the cheerful world of soft drinks. This was one act of love, possibly more than any other, saved my life. No greater love exists than that a man who lays down the bottle for another man!
Some people have suggested that I must be an oddity in all this. It was a long struggle for people to give up the demon drink and it is usually very dramatic. Well, I have seen the films, read the books, know the social science. And I agree that this is what ‘alcohol’ is made to look like. It is a heartbreaking tragic story. A sad tale. A tale told by an alcoholic full of gloom and doom. But all I can say: this is not my story in any shape or form.
Ah ha, people say. You were not an alcoholic then. And I suppose that this must have been the case. Jokingly for many years I had called myself ‘a non diseased social drinker’. But drink a lot I certainly did, as any friend would tell you. Here are some facts of my drinking life:
- I drank every day of my life for nearly forty years. A day without drink was very rare.
- Some periods, especially when I was young, would be almost uncontrolled in my drinking quantity. I simply did not count how many pints or bottles I drank. I just went on drinking and speeded it up – the more I drank, the more I could drink.
- In the latter years, my standard daily intake would have been minimally two pints of lager and a half a bottle of red wine consumed between seven and eleven at night every day, with food. On weekends and at ‘events’, it could be a lot more. In the language of units, this would have been between 8-10 units a day at least, 60-70 a week.
- Drinking was thoroughly and routinely integrated into my life. It was always social – it involved centrally going to the pub most nights, for a selected time. It was a clear marker of the time when I was not working. It did not leave me with hangovers, and I never missed a day of work because of it. I was always there bright and breezy in the morning getting on with whatever had to be done. I had no conception of my drinking as a problem, except I knew that so much drinking might well catch up with my body one day! (I joked a bit about how when they opened up my brain upon my death they would find it pickled: ‘and this man was a professor’, they would ask?).
- I did not engage in solitary drinking at all, nor did I drink at odd hours (lunch times were taboo during the week; at weekends though, lunch time drinking could continue for the rest of the day!).
- I believe I was a good social drinker. Friends say that I became a bit silly and a bit argumentative, but violence and aggression never appeared.
I have checked up on definitions of alcoholism and abuse. On the definitions of the Royal College of Psychiatrists, I clearly drank far, far too much. Their list of ‘warning signs’ of addiction included:
- you do not feel right without a drink, or need a drink to start the day
- you get very shaky, sweaty, and anxious/tense a few hours after your last drink
- you can drink a lot without becoming drunk
- you need to drink more and more to get the same effect
- you try to stop, but find you can’t
- you carry on drinking even though you can see it is interfering with your work, family and relationships
- you get “memory blanks” where you can’t remember what happened for a period of hours or days
On this list, I could tick items 3, 4 and 7. I could drink without getting drunk; I certainly always need to drink more; and I know I had memory blanks. Later, on the web site of Alcoholics Anonymous, I did their test : I said ‘no’ to all their questions.
If I am being truthful, I can say that over the forty years of my drinking I did have a few blackouts – maybe five or so; and I did from time to time think I should cut down a bit – though never that seriously. Once I went to work and someone commented that I smelt of alcohol. And at weekends, we would start lunch parties that started at mid day and went on till three the following morning. A lot of alcohol was washed down with a lot of food.
I have tried to be as frank as I can about this; because most people think of heavy drinking as alcoholic. And heavy drinker I was. Likewise my medical problems of the cirrhosis were clearly linked to alcohol. But the fact remains that I stopped immediately – with no problems and no obvious (to me) side effects. It sounds like I am a medical oddity – but I believe that in my case, not going to a therapy group saved me from being an alcoholic! Some recognition needs to be made of really heavy social drinkers who enjoy their social drinking, but for whom it does not pose social or interpersonal problems. I was a happy drunk: but my body could not take it.
Death and The Gift
Transplant illness takes you straight to the core: you know you will die if you do not get a new body organ, and you know that in most cases that new organ will come from the dead body of another. Of course, I did not know that immediately: it only became clear over time – so that I can now put it like that so bluntly. But true it is. Transplant folk live with death, just like everybody else, but only more so.
That I might die soon became apparent, and my focus initially was practical. There are bread and butter matters that waiting for a transplant brings up. This was now the time to get my life sorted – to get personal matters done. A will was written and lodged with solicitors. A ‘living will’ was completed (with the help of an online form from the Terrence Higgins Trust): should the terrible issue of being put on a life support machine, I wanted that plug pulled as quickly as possible. I chose the music for my humanist funeral! (I have since decided this would not be my choice of music after all! How fickle we are).
But wider and deeper issues comes with all of this. I did not want to die, but I was ready for it. I may be only 60, but I had done some things and had a good life. I would like more of it, please. But if it was not to be, I was ready. I hoped I would die quickly and relatively pain free. And that my loved ones –especially Everard- would get over it reasonably quickly and continue with full lives. I found comfort in a lot of muddled and trite sayings: one day at a time; life is for living; we are all dead in the long run; Life is a beach and then you die. And my musicals: the wonderful lyrics of Stephen – send in the clowns- Sondheim and of John Kander and –Cabaret- Fred Ebb: ‘Life is what you do whilst you hang around for death’. I had liked life; but one must always be ready for death, because that is for sure what will come one day. I had no major unfinished business. After all, all our little deeds amount not to a hill of beans.
Or do they? After surviving this experience, maybe our little daily actions matter every day more than we ever know. Lying there in the midst of serious illness I am reminded of Gertrude Stein’s famous deathbed last line: So what is the question? And two more trite questions came so overwhelmingly to me: what is the meaning of it all, and did I lead a good life? You hardly need to deal with the world’s philosophical torment at this moment of your life. But that is what came to me. And in some ways such questions are inevitably religious – they do with matters of our being in the world, our existences and indeed even our ‘souls’.
So called ‘religious people’ seem to have claimed the dominant discourses and institutions for our dying. In illness, it is so easy for religion to become the quick fix. Matters such as salvation, dying, pain, suffering, and meaning all raise their head. Somehow, most religions seem to take you down the garden path to a version of life after death. And I suppose for the religious, that must be a comfort of sorts (unless you have led the bad life: woe betide your fate then!). But if you don’t like, want or need such populist rationalisations, what are you to do? God kept re-visiting me in hospital; and I kept telling him to go away. But it is hard to avoid. Good friends who knew me well were aware of my long held humanist views and they left religion well alone. Nor did I have to encounter religion in any formal way in the hospital- I had made it clear on all my form filling that I was not a member of any religious faith. And I have to say I was indeed left well alone. I am sure many of the nurses had faiths; but there was no attempt to draw me into this at all. I was not pestered by anyone at my bed side. In fact all of my two and half months in hospital passed without me even glimpsing any religious characters moving around in the wards. I guess the hospital is now a mainly secular place. I hope that those who want last rites and their rituals get them if they want ; but I had made clear that I did not, and they left me well alone. Good news. I think. I was indeed left alone in my non faith and agnosticism.
And after the surgery – when the green light for ‘more life please’ is on – death takes on another shape. For now, the issues become the death of the other – the person whose organ you will now come to live with. What is the nature of the body of the other which is now about to enter your own body – its spirit, its soul, its goodness or badness?
Illness as living with the dead: ‘Kylie’s liver’ and me
A central challenge after post-operative transplantation would seem to be that of handling the body’s potential rejection of the new liver. Over a number of months – but especially in the early days – a tight regime of medications and clinical observations are needed to keep the body in a permanent low immune state to protect the liver, whilst at the same time preventing the arrival of any opportunist infections which could be life risking. The potential rejection of the liver is a key medical concern.
But the ‘moral’ rejection of the liver seems to be of little concern within the medical setting. At hardly any point was the issue of living with the liver of somebody else ever raised (there was one meeting of prospective patients where several people raised it as a question; but not much was said about it. The hospital system works hard to keep patient and donor as separate worlds). Yet for me, and I suspect for many, lying there in a hospital- and indeed for a long time to come- a new psychic issue has to be wrestled with: just who or what is this living organ now inside me, and how am I to live with this other dead person daily? As I often lightly joked in company, ‘you may think that there are only two people here, but actually there are- from now on -always three!’ In one sense, I would and could never be alone again: another’s living haunting presence could now always be with me. Here is a small piece of writing I wrote about two weeks after I came out of hospital:
So now I am no longer me – just me. Alone. I will spend the rest of my life in very close proximity with another life (or is it another body). I am a 61 year old man, who now lives with an 18 year old’s liver. Two bodies have become one body. Are these body parts simply mechanical objects? Or are body parts linked to the soul? Is my new liver simply a mechanical liver which has technically switched bodies, thanks to the skill of my surgeons? Or is it more like a soul: a kind of essence of my being, only now two beings and two souls. The first machine like view seems a bit dehumanizing: but the other view borders on the religious and could start to claim too much. There are now autobiographies written by transplant people who tell of a take over of their bodies by the souls of others: they now drink when they did not drink, play music they used not to like; and have become gardeners, or sporty, when they never were before. And all this apparently is because their donors did! Are souls as well as body parts transplanted? I must look into this more…..
I am a little unsympathetic to this latter view. But there is no doubt that an important part of the transplant resolution, then, is some kind of coming to terms with the new organ. There are many shifting responses to this issue. It could be lightly and swiftly ignored, denied, and simply forgotten. It could be seen as a bit like having a new prosthetic limb or a heart pace maker. Modern medicine is constantly putting new things inside our bodies and most people seem to have to come to accept this without too much fuss (except curiously the ‘theorists’ of it). But a moment’s thought tells me that this really is not the same: this, after all, is the life of someone else who had been living but is now dead; and this is the one part of that dead person that goes on living. And it is living in me. In some ways, the new organ is now in some ways deeply embedded in my own. I seem to possibly have become –through my surgery – ‘two beings now in one’? This sounds a bit spooky.
As I lay there on the ward, and subsequently in many places, I have pondered the nature of this ‘other’ that I now live with on a daily basis. I mulled over a range of issues.
Just who is this kindly but dead person I now live with all the time? Strangely, the whole transplant procedure keeps us apart: to avoid all manner of complications, donors and their families are kept wholly separate from the transplant patients. All I knew for months was that my donor was an eighteen year old. Nothing else. So a huge imaginary has room to grow in my mind as to just who this person was. A bit later, through writing to the donors (more of that later), I learned it was a young woman who was training to be a nurse, and who died as a result of surgery. To this day, I know no more.
I suppose the linked issue that the nature of this person should not matter biologically but may matter emotionally. It would not matter to me really who the person is who saved my life – I am just truly grateful. But there is a nagging worry: what if the person had been a serial killer, or a genocidal tyrant: or something equally unethically acceptable to me. At a more banal level, how might the parents of my donor feel if they learned that I was gay? These days it is probably not an issue. But for some people, the idea that their child’s death meant the living of a homosexual would be a true nightmare.
And how does this person connect to my new life? My donor has literally saved it. Without her, I would not be here. In one way, I have daily evidence that her liver is keeping me alive. My energy may be her energy. The energy levels of 18 year olds and 61 year olds are pretty different, and I was now very energetic (again?). Indeed, the liver is biologically speaking a clear source of energy organizing.
And this leads me to ponder at a much deeper level the need for me to respect my own body – which is now not just mine, but the sole living remnant of a donor. I think daily of this person who I hardly know and who now lives with me in my every action. If I feel I ever do something wrong, I feel I am shaming her liver. I must not do that. My new liver strangely becomes my conscious conscience. I must live a good life for her sake. That must be my minimal responsibility. And maybe also I should be joyful: I should daily celebrate her life in my being and the joy of living in the world ? Maybe too I should have a responsibility now for the world – a saved life needs to recognize its obligations, its duties to humanity.
Illness as stages: critical moments, fateful moments
Beginnings and endings
So when might the ‘transplant pre-phase’ start and end? Beginnings are hard to determine. It could start with the moment I first knew I was ill, but this is very hard to determine. Was it months – or years? Would it be the sudden and inexplicable attack of public diarrhoea in September 2004; or the loss of my voice in December 2003; or the general depression phase I seem to have entered early in 2004? Would it in the wildest case date back forty years to my first drink? Or it could be the first moment I encountered an official medical situation in Santa Barbara in March 2005 (but that comes along at a relatively late stage a lot happens before I go anywhere near a doctor). The only way it can be really identified is to suggest a fairly open ended stage leading up to the major event of being identified as ‘seriously ill’. And yes, that would mean all the events leading up to hospitalization for one night in Santa Barbara which was certainly subjectively a major fateful moment. But this then leads to a patient stage which would include two years before the transplant surgery takes place, and one year before I even got on to the list (two other landmark events).
Curiously, although I did not want to know this at the time, quite a lot of people die in this early phase. They may not even reach the diagnostic phase at all. Throughout history a lot of people must have died of unidentified cirrhosis of the liver, and certainly these days many people do not get on the list. There is an elaborate procedure of screening for this list. The ‘pre-phase’ is all there is.
But endings are also very ambiguous. Entering the ‘transplant post-phase’ is a hugely ambiguous stage. I was certainly not in the post patient phase immediately after the surgery. Quite the opposite. This was a period of intensive illness and recovery, of life in the intensive care unit, of being under constant surveillance, of pain and morphine, of the side effects of medications, of drips and blood and injections and the inability to move or wash or dress. For a while I was hallucinating and out of my mind. Serious illness surrounds you at the moment you are supposedly getting better, and it would be absurd to call this the post-patient phase. But likewise, when I reached home and start experiencing after care – nurses visiting daily, hospital trips weekly, life in very slow movement for a good few months – it is hard to see even this as a ‘post patient phase’? Perhaps ‘the post’ phase come when the doctors want to see you less, or when the nurses stop coming, or simply when I choose to define myself as ‘over it’. There again, a liver transplant –any transplant – is for life. Medications and hospital visits will now be inevitable for the rest of your life. ‘Being ill’ will never go away. So I could ponder whether the arrival of the remission society means that there is now no pathway to recovery finally: no exit. Now a transplanted life may be one that is permanently bound up with the patient or sickness phase. There is not ‘transplant post-phase’.
So I looked for dramatic events that signalled my ‘normality’. For me, for a few months, I reached this almost hysterical period of feeling so good about myself. I think I might call it my ‘honeymoon period’ and it lasted from late May 2007 till approximately the end of October 2007 – five months.(In a milder version, it still continues). Although I still had to visit the hospital regularly, was on quite a bit of medication, and insulin for my new diabetes – it was a period of great jollity and happiness. I claimed that I had never felt so good; that I must be a pain to be with as I was relentlessly cheerful. But by one day in early November, I felt tired, a little down, weak, and I started to ponder just what this was all about. Indeed for the first time since the elation period I was left with the problem: now that all this main sickness is done – at least for the moment – what am I going to do with the rest of my life? I was 61 and retired. Where was I to go now? Maybe this was when I started to enter the post patient phase. But even then, one year on in late March 2007, I realised that not a day had gone by without me thinking about the illness, the new liver, the donor, and all that came with it. It may be that it will never go away; and maybe this is right. But there again, maybe a new issue is learning just how to let go: an important life experience has now largely come to an end, and it will not do to dwell on it too much in the future. When this book is done, maybe I will leave my illness behind.
Whatever else, endings and beginnings are rarely simply endings and beginnings.
One way of thinking about these changes, endings, beginnings is to focus on some critical or fateful moments. Many ideas can capture this: turning points, epiphanies, being reborn, transitions, metamorphoses, reincarnations. These are moments in life when a person feels cataclysmic change taking place. Whether it is or so remains open. Indeed many lives may feel full of these changes – and indeed when I was ill I felt almost every day was yet another damned turning point. I suspect that as illness takes you up and down all the time, the idea of turning points and fateful moments – by whatever word is used- becomes a very common everyday experience.
But with this swirl of change taking place in the background, I want to alight on just four ‘fateful moments’ during my illness. I could name many more because there were many more. But these will do for the moment. I take a fateful moment to be literally that: a moment which shapes my fate, and shapes it dramatically. What I was before is no longer. Something new is born. This raises the issue of whether this had to be a dramatic change – or something very much aligned with the old self. Later I will suggest that for me it was a re-alignment rather than a transformation.
FATEFUL MOMENT ONE: The Giving Up of Drink
I call my first fateful moment ‘the giving up of drink’. This happened very early on. In the Santa Barbara Hospital, having been diagnosed in my hospital and lying there in the dark loneliness of the pensive night I said loudly to myself I will never, ever drink again. Absolutely. Never. Under no circumstances. Finally. Never, ever again. This is what flooded my mind. There was to be no equivocation, no opt outs, no special circumstances when I could have just a little one. Not even a liquor chocolate or a brandy ice cream! Never means never. And it is for life. Images of Vivien Leigh as Scarlett O’Hara standing outside of Tara at the end of the first part of Gone with the Wind came into mind. There she stands. ‘If I have to lie, steal or cheat, I will never be hungry again’. Only I said …. ‘I will never ever drink again’. I had once – back in 1984 – given up smoking in this absolute way, and so I would do this again. And the fact is that it worked. From that moment to this I have never had any kind of alcohol, and even more curiously never ever even wanted to. Do I have strong will? Maybe. But I am sure it is much more complex; I will return to this. But a fateful moment it was. If I had not done this, the path taken would have been very different. And I almost certainly would not be here to tell this tale. I had seen a few friends die from drink, friends who had sadly not taken the warning seriously and continued on to their premature deaths. The memory of them was certainly one push for me to stop.
FATEFUL MOMENT Two: The Getting on ‘The List’ – The Easter Crisis
One year after my diagnosis, and having had one year of being ill – but bearably ill – I took a turn for the worse. On the 31st March 2006, I got up feeling as fine as I could. I went to the bathroom and suddenly without warning found myself vomiting huge quantities of blood. I told Everard; we rang my nephew; we went immediately to the hospital. It was a quiet Friday morning, and I was soon relatively quickly in the emergency ward for observation. And from this moment on, my world started to shift dramatically. From this moment, till the middle of May, about six weeks later, I was in and out of hospital and the whole process ended in me being put ‘on the list’. Getting on the list is the absolutely pivotal defining act in the transplant career.
I was observed in this local hospital for a week and then allowed home. A few days later I had my first major and observable encephalopathic attack – I found my GP visiting me in my bedroom at home and asking me a string of curiously obvious questions that I could not answer – like my age? I was back to hospital in an ambulance where it became clear I had lost my memory and needed further hospitalisation. What followed over the next following five or six days was an unpleasant hospital experience. Most of my times in hospitals have been OK, and usually I have nothing but praise for them. But this time was different: it was not. I met a truly unpleasant doctor – the old style pompous elitist style surgeon who was oh so superior to me the nurses and his students; who managed to mock me in front of them all (he asked me what I did for a living, and when I said I was a sociologist, he invited laughter from all around the bedside and made a scathing remark. I was defenceless!). I met a bitchy nurse who called me a ‘stupid old man’ because I forgot I was attached to a drip when I tried to move. I had incompetent nursing on a number of fronts – taking a blood sample took five or six attempts as various nurses came and went, commenting on my funny veins (I have never had any problem before or since with ‘my funny veins’!). But on top of this, I was – at least – slightly out of my head. I did not know where I was most of the time!
Finally, and thankfully, I was transported from this local hospital to King’s where I was admitted immediately and where within a couple of days I was feeling much better. But this was to lead to two weeks of explorations and tests. I had – as they might say in the trade – ‘decompensated’ and the liver was failing. But is was here, lying in another bed that I learned that I was to have many tests to see if I was suitable for a transplant and to assess whether I could go on the list. Suddenly the issue became a stark one: the issue of ‘The Transplant List’ raised its penetrating head. Now I had heard about the possibility of a transplant from my first Santa Barbara encounter. Agnes had told me regularly it would be the best path for me to take. It had become a backdrop to my life. But for the time being this had been on hold. The illness was not quite bad enough for a transplant. Now I was being fully frontally confronted with this issue. I was going through a mass of tests to see if I was up to having a transplant. Yes that was where I was now. The implications seemed too scary to think through, but bit by bit I did. I now needed a transplant – a major, possibly dangerous, surgery. Such opportunities only come as a last ditch opportunity to survive. So I had reached this end stage. And even here I might not get on to the list – I might be too unwell for even this. Dark thoughts. For a moment. Death.
What is significant about this is that it serves more than anything else as a crucial time divider. There was a serious shift. Before, I had slightly worried whether I would ever want to have a transplant and hoped ‘probably not’; now I was being told I might not be well enough to get on the list. Tables had turned. Now the issue was whether I could have one.
And when I was put on the list two weeks later, everyone around me celebrated. They were so happy for me. And I pondered: so happy for me, that I should now have to submit to a life risky heavy duty major operation that takes about 12 hours and from which I may not recover? This was odd indeed. The choice was almost not mine. And yet it was. I could see behind all my anxiety and fears that it was indeed the only thing I could do. Without it, there was absolutely no hope at all. It would be the end. Again, if I had not done this, the path taken would have been very different. And I would not be telling this tale.
Before this incident, I was trying to lead a relatively normal live with a lot of rest to help me through. After this, I really was seriously ill waiting for a transplant; and there was little I could do. This was the water shed. In the first year of my illness, I was trying to get on with life as best as I could. But the second year was very different: it was ‘waiting for the transplant’.
There were two linked life marker events that coincided with this. The first was my 60th birthday – April 4th 2006. It was a Tuesday; I was in the hospital; and I was quite a bit loopy. We had plans for a celebratory meal during the weekend before, but it had to be cancelled. The second was that I was due to be in Iceland to give a lecture in this very period. It held some symbolic significance to me as to whether I could lecture still during my illness. And it clearly also had to be cancelled. It had been quite a struggle for me to prepare for it, but it was all ready to go. I have often wondered if the extra energy needed to prepare for this brought on my sudden liver failure? I think I have now learned that in illness the body does need to rest a lot, and flying against this is foolish.
FATEFUL MOMENT Three: A Serious Operation and an Unexpected Call
The third fateful moment hinged around the surgery itself. Of course, I did not know about the surgery. The good news is that you are so drugged out of it that you have no awareness of any of the intricacies of surgery. I cannot even picture the operating room whose ante-room Everard had wheeled me. You are the absent guest at any major surgery. But once I became aware, the struggle for life was on. This is by far the most detailed story or ‘recovery’ ‘getting better’ and I will leave this for later chapters. The surgery may have solved the liver problem, but you still have to solve the living problem. It is another fateful moment. My body and soul have to be out back together again- bit by bit.
FATEFUL MOMENT Four: Born Again – without the God
And finally, some time after all this – six months or so – the ‘fates’ take another turn. I did not keep a diary for most of my illness – when ill this seems to me to be a very difficult task. People kept telling me to write it all down. But when your hand shakes, your mind is muddled and your body is tired, this is no easy thing to do. I couldn’t. But it was a sign of my progress that I started to keep notes around May and June 2007 – four or five months after the surgery.
It was Tuesday 22nd May when they removed the drain – the simplest of all procedures, as they had always said it would be. It was just simply eased out of my abdomen and after a long three months my body was once again free. It was a matter of seconds and how I thanked the kind doctor. And within a day I felt so differently. I had not realised just how radically different my body had come to be, felt, and lived over the past three months – as I moved around with a bag hanging out of me. A bag that was connected to my inside organs; that was dealing with the waste and mess from my inside; that was seriously impacting my bowel movements. And that my every move in bed, walking, sitting, or toileting had been shaped by it. And now it was done. It was out. And I was liberated.
A few weeks later I comment:
Somewhere around the end of May, my ‘old self’ arrived home – secretly and unannounced. It quietly crept back into my body, settled in and started to do its work. It said hello to my beloved new liver and they became friends. I noticed a voice return that I thought I had lost forever and which had been gone for the past two years- a voice I had lectured with for nearly forty years but which had given up on me towards the end of 2004. It had come back with a vengeance: strong, speedy, sizzling. I noticed too that my body movements became more ‘normal’, more upright, a quicker pace, a more confident stride. The shower could now be entered in a mindless musical mode – for a long while it had become a slow, time consuming, ever watchful chore, usually needing a caring eye, ear or hand for help. And my brain erupted with thoughts – bursting, stuffed full, overflowing with ideas and observations. I started to write again! I had never understood this phrase before but now I knew what they meant when they said ‘the muse came to me’! An odd fateful moment: but something had lifted me out of my previous experiences and started to tell me: it was nearly done. You are almost there. Welcome back to the land of the living.
This, of course, is a continuing story.
Table 1: On being seriously ill –Twenty five little health problems of liver disease
Some physical symptoms of my illness: end stage alcoholic liver disease. I had them all at various times and to varying degrees. This excludes psychological and social issues and all the transplant and post transplant issues (which will be another equally long list – to appear more gradually throughout this book).
|1||Lethargy and poor mobility||Sleeping and dozing all the time – can’t do much or focus; slowness of movement and mind.|
|2||Jaundice||Yellow look in skin and eyes|
|3||Ascites||Huge abdomen; needs draining of fluids|
|4||Nausea and vomiting||Sick feelings, violent and long, noisy sick attacks|
|5||Dehydration||Dark urine, dry mouth, sunken eyes, lethargy: need tablets and water|
|6||Constipation||Creates very serious problems as toxins get into brain. Needs to be balanced with its opposite, diahorrea.|
|7||Internal bleeding ( GI bleed)||Identified especially when vomiting blood|
|8||Encephalopathy||‘Losing your mind’ – moves through stages: from poor memory and general drowsiness through full scale confusion and hallucination to borderline coma. This was my major serious symptom with growing frequency and seriousness, finally lasting three days.|
|9||Portal hypertension||Did not identify this myself – but had it. Generated ascites, encephalopathy, GI bleeding and black stools.|
|10||Poor blood coagulation –||Clotting problems: for example- trips to dentist could lead to heavy bleeding.|
|11||Temperature control||Feeling very cold all the time: fires on in the summer! Doubly wrapped.|
|12||Muscle Loss||Thin arms and legs: ugh!|
|13||Sleep reversal||Very poor sleeping and poor sense of day and night|
|14||Oesophageal varices||Links to bleeding|
|15||‘Spidery blemishes’||Nasty little red spots all over the body|
|16||Loss of appetite||And very odd eating habits start to develop- salt intake becomes a worry which disrupts most standard eating patterns anyway. Give up drink.|
|17||Itching||Scratched a lot, but unaware initially it was linked. I have seen it painfully intense in some people, but only mild for me – relatively. Once I knew, I just tried never to scratch them!|
|18||Cramps||Unbearable intense pain in thighs, legs and feet. Agony. Often all night long at some periods.|
|19||Dark urine||Always: and for a long time. Initially thought it was normal.|
|21||Dark stool (indicates blood)||This is the one symptom that I do not recall having- although there was often blood in this region, and I certainly looked daily in worry. Nevertheless- always surprising : odd colours, bad smelling, and viscous.|
|22||Diahorrea||Often seemed endless: a fine balancing act with constipation!|
|23||Pruritus||Massive feet swelling (and looking very black!)|
|24||Peritonitis||Pains and vomiting|
|25||Infection||Increased vulnerability to infections|
Ascites A build up of fluid in the abdomen.
Bile A fluid that is produced by the liver and stored in the gall bladder. Bile coats the fatty foods we eat, making them easier to digest.
Biopsy The removal and examination of a small piece of body tissue which is taken in order to make a diagnosis (e.g. liver biopsy)
Cholangitis Inflammation of the bile ducts.
Cirrhosis Scarring of the Liver, which affects the way it works.
CT Scan A special type of X-ray which uses a computer to show a cross section of the body.
Donor A person who donates a part of their body to help other people.
Echocardiogram Uses sound waves to show how well your heart is working.
Electrocardiogram Records the electrical activity in your heart (ECG).
Encephalopathy Tiredness, irritability, lack of concentration, and personality changes, associated with liver failure.
Endoscopy Examination of the inside of the gut using a telescope.
Haematemesis Vomiting of fresh or old blood.
Hepatic Refers to the liver.
Hepatomegaly Enlargement of the liver.
Immunosuppression The use of medicines to stop your body rejecting your new liver.
Intravenous catheter A small tube which goes into a vein to give fluids, blood or medicines.
Jaundice A build up of bile that causes the skin and eyes to go yellow.
Liver function test Blood test to see how well the liver is working (LFT).
A biopsy is performed to accurately assess the extent of liver damage, and its cause,
A needle is inserted through the skin on your abdomen into your liver. A small piece of tissue is then removed with the needle. Local anaesthetic is used for this procedure and you will need to remain in bed for a minimum of 12 hour afterwards.
Sound waves are used to create a picture of your liver and surrounding organs.
Melaena Black stools caused by the partially digested blood.
Oedema Build up of fluid causing swelling.
Pruritis Itching caused by an increase in bile salts in the blood.
Rejection Immune system protects the body by recognising certain foreign bodies, like bacteria and viruses, and destroying them. The new liver is seen as a foreign substance. Rejection is an attempt by your immune system to attack the transplanted liver and destroy it. To prevent rejection, anti rejection medications are prescribed for the rest of your life.
Splenomegaly Enlargement of the spleen.
‘Split liver’ transplant Donor’s liver is split between an adult and a baby and given to two sick people – in my case, me and a twelve month old baby (These are comparatively rare and slightly more risky).
Variceal bleed Bleeding from varicose veins in the food pipe or stomach.Ascites
END THREE :WEBSITES
Some Key Transplant Web Sites
UK Transplant – The NHS’s official transplant site. Potential donors can sign on to the organ donor register . It also features real life stories from people who have benefited from transplants, as well as stories from donors, and provides lots of useful information.
UK Transplant Support Network- TSN is a nationwide network of volunteer transplant patients and their carers, who provide locally based support for others coping with transplantation. Short or long term support from outside the family has been found to play an invaluable part in the waiting, adjustment and recovery processes. The TSN support lines are 0800 027 4490/4491. Provides a valuable clearing centre for linking to a wide range of groups
Transplants in Mind – Promotes awareness of organ and tissue donation for transplantation and is responsible for the organisation of National Transplant Week.
Live Life Then Give Life – Campaigns to increase the number of people on the organ donor register by encouraging the public to think and talk about organ donation.
British Organ Donor Society – looks at topics realted to organ donation and transplantation both in the UK and worldwide.
Donor Family Network – welcomes all donor families to become members. Provides support and looks at the positive effects on the lives of others.
Transplant Sports UK – Organises sports and social events for transplant recipients.
GIFT – The Children’s Transplant Charity – A self-help group for families whose children have had or are awaiting a transplant.
Transplant Kids – A resource for parents and children about transplants, written in child-friendly language.
The Human Tissue Authority – a key resource for legal matters. The HTA regulates the removal, storage, use and disposal of human bodies, organs and tissue from the living and deceased.
On Specific Organs
Liver Transplant Support
British Liver Trust
British Heart Foundation
Heart Research UK
British Lung Foundation
Cystic Fibrosis Trust
Kidney Research UK
National Kidney Federation
The Transplant Log
Photographer Tim Wainwright and sound artist John Wynne were artists-in-residence for one year at Harefield Hospital, one of the world’s leading centres for heart and lung transplantation. The project was led by the artists but guided and developed through interaction with the participants. Funded by the Arts Council of England and supported by Royal Brompton and Harefield Arts. They worked with patients, their families, and staff at the hospital to collect materials for various works including a large scale photographic sound installation which will show in London in 2008.
Well over 100 short life stories provided with photos and forums.
United Network for Organ Sharing (UNOS)- a major US organisation which administers the nation’s only Organ Procurement and Transplantation Network (OPTN), established by the U.S. Congress in 1984.
Transplant Central (USA) Transplant Central is a support network dedicated to the sharing of information by patients, families, spouses, doctors and surgeons who have been through the organ transplant experience or face an organ transplant.
The Gift of a Lifetime : The Transplant Journey
US based site with a number of personal stories.
All about transplantation and donation
Appendix four: reading
Transplant Donor World: Guide to further reading.
There is a vast literature on all these topics. Here is a starter listing…
Studies of Donor- Transplant
Renée C Fox & Judith P.Swazey. The Courage to Fail: A Social View of Organ Transplants and Dialysis 2nd ed 1978 – the classic story
Lesley Sharp . Strange Harvest: Organ Transplants, Denatured Bodies and the Transformed Self (2006) University of California Press – excellent major new study with focus on donors
Kieran Healy. Last Best Gifts: Altruism and the Market for Human Blood and Organs (2006) Chicago – main focus on the issue of altruism and the market
Margaret Lock Twice Dead: Organ Transplants and the reinvention of Death California 2002
Keith Wailoo et al A Death Retold: Jessica Santillan eds , The Bungled Transplant and Paradoxes of Medical Citizenship Chapel Hill: University of North Carolina (2006)
Dianne LaPointe Rudow, Linda Ohler & Tersa Shafer A Clinician’s guide to Donation and Transplantation NACTO, The Organization for Transplant Professionals. Lenexa, KS.(2006)
Arthur Kleinmann. The Illness Narratives: Suffering, Healing And the Human Condition ((1988) Basic Books – the front runner book. Deeply influential, and he has published a lot more
Howard S.Brody Stories of Sickness. Oxford University Press (2003, 2nd edition).
G.Thomas Couser Recovering Bodies: Illness, Disability and Life writing (1997)University of Wisconsin Press.
Arthur W Frank The Wounded Story Teller: Body Illness and ethics (1995) Chicago
Arthur W Frank The Renewal of Generosity: Illness, Medicine and How to Live (2004) Chicago
Rita Charon. Narrative Medicine: Honoring the stories of illness (2006) Oxford.
‘Social ‘ Classics of Narrative Medicine
Julius Roth Timetables: Structuring the passage of time in hospital treatments and other careers Bobbs Merrill (1963)
Irving Zola Missing Pieces Temple University Press (1982)
Arthur W.Frank At the will of the body: Reflections on illness Houghton Mifflin 2002
Ann Oakley Fracture: Adventures of a Broken Body Polity (2007)
Narrative Literature: a sampler
Virginia Woolf On Being Ill (1930) Masschusetts. Paris Press 2002.
Anatole Broyard Intoxicated by my illness (1992). New York: Clarkson Potter
Audre Lorde The Cancer Journals (1980) San Francisco: Aunt Lute Books
Barbara Peabody The Screaming Room: A Mother’s Journal of her son’s struggle with AIDS. NY. Avon (1987)
Paul Monette Borrowed Times: An AIDS memoir (1988) NY: Harcourt
Jean-Dominique Bauby The Diving-Bell and the Butterfly. (2002/2008) London: Harper
Paul Robinson ‘My afterlife’ in his Opera, Sex and Other Vital Matters Chicago (2002)
Gaea Shaw Dying to Live
Elizabeth Parr I’m Glad You’re not Dead
Reg Green The Gift that heals: Stories of hope, renewal and transformation through organ and tissue donation (2007) United Network for Organ Sharing. Bloomington, Author House
Chris Klug To the edge and back
Claire Sylvia A Change of heart
Pauline W Chen Final Exam: A Surgeon’s Reflections on Mortality Random Houise, 2007
Thomas E Starzl The Puzzle People:Memoirs of a Transplant Surgeon Pittsburg 1992
Roy Calne The Ultimate Gift Headline Publishing 1988
Directions for a sociology of donor-transplant
Richard Titmuss. The Gift Relationship(1971) Allen-Lane.
The truly classic and influential text.
Nikolas Rose The Politics of Life Itself: biomedicine, power and subjectivity in the twenty first century (2007) Princeton.
Latest account but does not look at transplants
Nancy Scheper-Hughes with Loic Waquant eds. Commodifying Bodies (2002) Sage
Crucial for the wider exploitative context
Ken Plummer. Intimate Citizenship (2003) Seattle: University of Washington Press.
My own account written before I was diagnosed and which only lightly touches on it but which does provide a framework for re-thininking.
Charles S Bosk Forgive and Remember: Managing Medical Failure Chicago 2nd ed ed (2003) Chicago.
Robert Zussman Intensive Care: Medical Ethics and the ethical profession (1992) Chicago.
David Morris Illness and Culture in the Postmodern Age California
Anselm Strauss The Social Organisation of Medical Work Transaction (1997)
Cathy Charmaz Good days, Bad days Rutgers (1991)
Erving Goffman Asylums (1961/Penguin: 1968). And see Stigma (1963/Penguin: 1968) Classics!
Niall Scott & Jonathan Seglow Altruism (2007) Open University
Natan Sznaider The Compassionate Temperament: Care and Cruelty in Modern Society (2001) Rowman and Littlefield
Ian Burkitt Bodies of Thought: Embodiment, Identity and Modernity (1999) (one of many, but very integrative)
Thomas J Scheff . Goffman Unbound!(2006) Paradigm (quirky: Goffman rules and shame is the key to life)
Anselm Strauss Continual Permutations of Action (1993) Walter de Gruyter (my favourite action/structure book! Nobody else ever seems to use it!)
James Holstein and Jaber Gubrium The self we live by (2000) Oxford
Adele Clarke Situational Analysis (2005) Sage – for her method.
Method: Auto/ethnography (and illness)
Carolyn Ellis Final Negotations: A story of love, loss and chronic illness Philadelphia: Temple University Press (1995) – classic early account and she is a leader in this field
Carolyn Ellis & Art Bochner Composing ethnography 1996 – series of essays ‘doing it’
Special issue: Journal of Contemporary Ethnography (Vol 35 No 4, August 2006)
Hilde Linemann Nelson Stories and their limits: narrative approaches to bioethics. (1997) Routledge
Veatch, Robert Transplantation Ethics
Ronald Munson Raising the Dead: Organ Transplants, ethics and society Oxford 2002
Petryna, Adriana Life exposed: Biological citizen after Chernobyl
Hughes, Nancy Scheper The Ends of the Body: The Global Traffic in Human Organs
David Benetar ed 2006 Cutting to the Core… contains:
M Smith The Prosthetic Impulse
Some key journals
Transplantation: The Official Journal of the Transplantation Society
Transplant International (the European Society for Organ Transplantation)
American Journal of Transplantation
New England Journal of Medicine
Sigmund Freud The Psychopathology of Everyday Life
Erving Goffman The Presentation of Self in Everyday Life
Michael de Certeau The Practices of Everyday Life
Marcello Truzzi ed Sociology and Everyday Life
Stan Cohen and Laurie Taylor Escape Attempts: The Theory and Practice of Resistance in Everydaylife
Henri Lefebre Everyday life in the Modern World
Candace West Misery and Company : Sympathy in Everyday Life
Sarah Nettleton et al eds The Body in Everyday Life
Shaun Moores Media and Everyday life in Modern Society
Barry Glassner Qualitative Sociology as Everyday Life
Jorg Durrschmidt Everyday Lives in the Global City
John Ross Living Dangerously: Navigating the Risks of Everyday Life
Thomas Moore Care of the Soul : A Guide for cultivating depth and sacredness in everyday life
Joan Cleveland Simplifying Life as a Senior Citizen: Hundreds of Tips for Everyday living
Jaber Gubrium et al Ageing and Everyday life
David Karp Sociology in Everyday Life
Lavinia Greenlaw ed Signs and Humours: The Poetry of Medicine (2007)