I was busy planning my next blog – some b****cks about stoicism or something equally poncey, when events kind of took over and spared any readers I have left from further attrition. So far I have been writing about the life of someone who, diagnosed with cirrhosis of the liver, experiences the increasing impact of symptoms, the amount of visits to hospital and most of all, the contemplation of the workings of the liver transplant list which fundamentally provides the only realistic prospect for survival. I didn’t really think beyond that at first, but I suppose deep down, I wondered whether one day maybe I’d get the chance to write the following. So here goes…
Thursday evening and the usual chaos of family life. Just finished tea (nice curry – you’re welcome) and we were laughing at embarrassing photos of our son at his prom when the phone rang. It was the land line – I missed the meeting when it was agreed that only I am able to answer this ancient piece of technology – so by the time I got to the handset it had rung off. As I was about to call back my mobile rang – the same number. A pleasant lady answered who introduced herself as one of the Transplant Coordinators and informed me that a donated liver was about to become available and that it had been allocated to me. I was conscious that the hubbub around me subsided as the subject of the phone call became apparent. I took the information in and relayed it – my wife had already shot upstairs to pack the overnight bag she had been meaning to pack for weeks and was already contemplating what to wear – and after agreeing to get to the hospital by 10:45pm, made myself a cup of tea. So. Very. British.
A few phone calls later, a quick jaunt over the Pennines and we were being introduced to the pre-op process. Lots of tests and forms, a shower, a change into gowns and at 3am a conversation with one of the surgeons about potential issues with the viability of the liver. One of the little know facts about transplantation is that only 50% of such calls result in a successful operation taking place. In many cases the donated organ is not viable owing to a number of factors. The good doctor concluded by telling us if we see him again tonight it would mean the operation won’t be going ahead, but if someone else comes for me, we’re on. What followed was two very strange hours, just me and my wife in a side ward, the conversation fluctuating from what shall we get to eat if we are sent home (McDonalds) to all kinds of ‘if things don’t go well’ scenarios (potential ashes scattering locations and what to have for the buffet etc). Then at 5am a nurse came and informed us we were, in fact, on. I sauntered into the operating theatre, filled with ‘faith, hope and love.’ I said ‘Hi’ to the team, lay down on the table, Vivaldi was playing and the air conditioning was blowing cold. The anaesthetist told me I was going to sleep, and thankfully, he was not wrong.
I woke up sometime on Fridayafternoon, conscious of the presence of my wife, her sister an anaesthetist, a nurse and what I believe The Black Knight would refer to as ‘just a flesh wound,’ the result of which was pain that I really cannot decribe, except to say it smarted a bit. This was soon exacerbated by the requirement to be turned whilst I had the rather large tubes currently residing DOWN MY THROAT removed. That was fun. I was fairly alert straight away and became more used to the situation. I was a tangled web of lines and drains protruding from various bits of me, and I was really, really thirsty, which I mention purely because I was ‘nil by mouth’ and it would be several hours before I could drink.
Fate soon lent a hand. My previous experience of nursing had been pretty much based on that displayed by my wife and covers three archetypes. First, the Barbara Windsor – bubbly, busty and above all predisposed to be nice to you. In my experience this is a mythical creature up there with Unicorns and friendly tube commuters. Then, there’s the Nurse Ratchett – true to her One Flew Over The Cuckoo’s Nest inspiration, clinical and lacking compassion to the point of cruelty. Finally, and this is the experience I am most familiar with, the Kathy Bates off Misery. You think they’re a fan but step out of line and out comes the sledgehammer. So imagine my surprise when the nurse who was assigned to care for me seemed to be nothing of the sort. She was everything I wanted in a nurse, sarcastic to a level I could only admire and disparaging of any fools that crossed her path (that would be me then). It’s a novel approach – taking your mind of the physical pain by constant emotional and psychological assault, but it did work. I am forever grateful to my Intensive Nurse for getting me through my toughest night ever with her pointed barbs, casual put downs and wicked tongue.
As the days passed I was transferred from ICU to the liver unit itself. During that time the process of rehabilitation and recovery was progressed. As every tube and line was removed, I felt a little but more human. I was still very delicate but tried to keep mobile and as independent as possible. There was a lot to get my head around. A lot of tablets to learn about – what they did, when to take, what to do if you forget etc. A whole new diet which is a bit like a hard core version of a pregnant lady diet – no unpasteurised produce, everything well cooked, no soft cheese or shellfish etc. Some things like going to the toilet and having a shower that once were habitual now became huge challenges to be overcome. A fellow transplantee cut to the chase when she first saw me and asked the obvious first question when seeing someone who has just had major surgery – ‘how long did it take you to have a shit?’ I had to clarify her question – did she mean how long after the operation did I first manage the task, or how long did it actually take once embarked upon? Ironically however the answer to both is the same – about three days.
By Wednesday the consultants who came by every morning started laying plans for discharge. Provided they were happy with all the functions they were monitoring, and that I was mobile and comfortable in self medication, I was to be released the following Saturday. That meant 8 days after the operation I would be back home, which seemed remarkably quick given how daunting the experience had been. Without being too graphic I have a scar that begins in the middle of my chest, descends for 8 inches and the veers off to the right just above my navel for another 6 inches. It’s quite impressive. During the 6 hour operation my stomach muscles were separated, my ribs manipulated, all my internal organs shifted about and of course a very diseased liver was replaced by a fully functioning one. I felt vulnerable despite putting a brave face on, and was worried about everyone making a fuss. Well, the dog making a fuss anyway. Saturday arrived and after gingerly hugging the wonderful nurses who had looked after me, I was whisked home. After a slight detour caused by forgetting half my medication and returning to hospital 30 minutes later via the roughest estate in Leeds, traffic calming measures accelerated over by a wife who clearly missed her calling as a tank commander, and my mortality compromised far more effectively than cirrhosis could ever manage, I made it.
So now I am at home recuperating and reflecting. I am well and becoming more mobile every day. All the indications so far are that the procedure has been a complete success. I don’t know what the future holds but I have every reason to be confident that I will see what happens at the end of Game of Thrones. The physical challenge is ebbing away but the emotional heft takes longer to discharge. Overall I am in awestruck gratitude. I have had so much love and support from so many people, particularly over the past few weeks, and especially from my family, with my wife playing a starring role. The staff at St James’ Hospital in Leeds are amazingly skilled, endlessly compassionate and wonderfully talented paragons of their professions. By an interesting coincidence I was in hospital during the conservative party conference where one of the less well remembered portions of a fairly calamitous speech by the prime minister was the announcement of a reversal of the organ donation policy, effectively making it an ‘opt out’ rather than an ‘opt in’ scheme. There are two things to bear in mind here – the government may take some time to get the legislation through given the complexities faced currently, and in any case research demonstrates that changing the law is not enough. In either event, if you intend to donate organs, still continue to register at the moment, but just as important, have a conversation with your kin, so that if they are approached by a doctor at a time they may be in despair, they know precisely what your intentions are. In late September of this year, somewhere in the north of England, just such a conversation was being held. Owing to the outcome of the conversation the above chain of events were set in motion. So no matter how much I am indebted to everyone else for their kindness and care, it is nothing compared to what I feel for the people who I may never know, my donor and family, who in a moment of grief, provided me with the gift of renewed life. Nothing I can write or say would ever express my depth of gratitude to them.
‘I’d be lost if not for you.’