Andy's Liver Transplant Story

Good here isn't it?

When I was first diagnosed with PSC, if anyone had suggested ‘Good here isn’t it?’ they would have elicited a plaintive ‘No!’

But that was 35 years ago, and the truth of the matter is that the intervening 35 years have been, and are, pretty damned good.

So, why am I writing this now? Well, it’s almost exactly 20 years since I had a liver transplant and it seems a waste to let that landmark pass without sharing the fact that, taken as part of a 73-year life (so far) PSC has been a blip – albeit a biggish one – on life’s journey, rather than the life-defining calamity we thought it was when it all started.

So, never mind the bull**** and bravado, what has it really been like?

In the beginning

It all started with abnormal blood test results found during a ‘well-man’ medical. Initially it was very unsettling; we fretted about what might be and we almost hallucinated about the catastrophe which we were sure had been visited upon us. In fact, it changed nothing and, except for blood tests, I continued entirely symptom free for the next 10 years. Lesson number 1: Use and enjoy what you’ve got. It is surely the dumbest thing known to man to waste what you have got today worrying about what only might happen tomorrow.

Roughly 10 years after diagnosis I had bleeding from my oesophagus – my first visible symptom. Certainly, somewhat alarming at the time (my wife’s wording is ‘horrendously alarming’) but need not have been. Hospitals are very good at sorting it out, and at managing things so it doesn’t happen again. Lesson number 2: Do the research so that you aren’t unnecessarily alarmed by the unexpected – but never forget lesson 1.

Managing

‘Managing things’ as referred to above consisted of quarterly endoscopies during which running repairs were carried out if necessary. A bit like eating sprouts to set a good example to the children, having endoscopies was not fun but was entirely do-able – and during this phase I came to realise that as a patient you do not need to be a subservient recipient of whatever; you can and should be a positive contributor to the morale of staff and other patients. Staff at all levels love being greeted using their names and being asked how they are. Nervy first-time patients love being chatted to by ‘been there, done that, got the T-shirt’ regulars. Lesson number 3: Especially in hospitals, be a person who improves other people’s days.

During the 6 years after the bleed, I did become progressively more unwell, but this only really became a problem in years 5 & 6. By the end of year 6 I was struggling and was grateful for an understanding employer. For my part, ever since diagnosis I had made a conscious effort to be diligent, positive and affable in all circumstances to maximise the chances of being cut a bit of slack if the need arose – which it did, and they did. Lesson number 4; Don’t retreat into ‘woe is me’; always aim to be diligent, positive and affable and remember lesson 1.

Towards the end of that time, I was at an industry conference and a fit-as-a-butcher’s-dog competitor (possibly slightly drunk) came and gave me a fulsome man-hug – considerably more fulsome than our professional acquaintance actually merited. I learned afterwards that, given the way I looked, he was saying goodbye. Indeed, he was; two months later he dropped dead whilst out running. Lesson number 5: The fact you’ve been diagnosed with something doesn’t make you uniquely vulnerable. Keep your eyes open and be sure to give others at least as much consideration and support as you think they should be giving you.

Waiting List for a Transplant

Once I was on the transplant list, the doom-laden catastrophising did rather ramp-up, and whilst I admit that a liver transplant isn’t as much fun as a skiing holiday, it was NOTHING LIKE as bad as I feared. (The appendicitis I had 4 years later was far worse.) The hospital stay was short (8 days), convalescence was fairly rapid (I was working from home within 1 week of discharge) and my recovery was amazing; (one colleague remarked ‘this is like going back in time 10 years’). My wife had difficulty keeping up with me. Lesson number 6 it’s not all about you! You’ve put your partner through an emotional shredder and their role within your partnership had to change. They have not had the sudden infusion of mental clarity, confidence and energy which you have. They require, and deserve, at least as much time, tolerance, understanding and support as they have lavished on you – and you have no real appreciation of what a huge amount that was.