Long, long ago when I had a progressive career, a company-supplied Rover Van den Plas with ivory leather seats, and aspirations to stardom, I took advantage of an executive health screen. Perfect health was declared (OK - they did say I was four pounds overweight) until a week later when my GP was sent the results of my blood test.
"These are nonsense," he declared contemptuously, "If these were right you'd be dead."
They were right, but I was far from dead. Several months, two consultants, a biopsy and an endoscopy later, PSC was diagnosed. The consultant sat back in his chair, settled his forearms very deliberately on its arms and said with a deep sigh of gravitas and foreboding, "Hard luck".
My career suddenly stopped feeling progressive. My hopes of something detached, preferably with five bedrooms, a double garage and about half an acre abruptly dematerialised. The spectre of invalidity, unemployment, poverty and even homelessness reared up before me.
The roller-coaster had started rolling. Looking back, the benefits of having had PSC diagnosed outweighed the drawbacks. Certainly the drawbacks of being ineligible for further life insurance were inconvenient, but the brittleness which had crept into my four year old marriage vanished the instant the GP phoned to say the results of the second blood test were the same as the first. My determination to hang on to my job sustained me through those periods we all encounter when we would like nothing better than to explain to our line-manager a little about his parentage and that of his antecedents, and resign.
It became crucially important to me to share any skills I had with my wife so she could become a fully competent, independent single mum if that was to be. I found a secure satisfaction in our urban semi with its small mortgage entirely covered by my life insurance. Above all I became focused /consumed /obsessed with loving and training my infant sons, so they would walk tall, strong, confident and optimistic, even if I had to leave them before the job was fully finished.
So, that was the pattern for the next 12 asymptomatic years - years burdened a bit by ever present underlying uncertainty, and periodic phlebotamistic confirmations that my PSC was progressing, but enriched by contentment in what we had, and by the love and support of an inexpressibly wonderful family.
Then, one ordinary evening came the oesophageal bleed.
Curiously, at no point during that evening did it occur to me that I might die. By contrast my wife got both our boys out of bed to say goodbye, believing, as she told me later, that as the ambulance doors closed she was about to become a widow. The roller-coaster was getting faster, wilder and less predictable.
The next four years were punctuated by frequent endoscopies at my local hospital, by periodic visits to the brilliant, skilled, sensitive, considerate and supportive team at Queen Elizabeth Hospital in Birmingham, by a steady loss of energy and libido, by grotesque expansion of my abdomen and, ultimately, by hospitalisations and increasing (at times totally disabling) disruption to my mental facilities.
These features were aggravated by a fear, fuelled by the experience of others, that my wife might not be able to stay the course, and by a clear recognition that my boss had a duty to “relieve me of my responsibilities” if my capability sank to a level which jeopardised the livelihoods' of my colleagues.
Mercifully, neither of these doomsday scenarios arose, and it was almost an irritation when Moira (a transplant co-ordinator at QEH) rang and called me in. Such is the tranquillity afforded by being a “born-again” Christian that I walked to the theatre with Moira and my wife without significant apprehension. If the roller-coaster is so clearly about to hurtle you into oblivion, there’s not a lot of point in trying to brace yourself.
The skill of the Birmingham team was such that, at no point post-transplant, was I in any significant pain, and at no point did I feel that anything was out of control. Sure, having a transplant was not entirely comfortable, and hospital wards did not always organise themselves according to my preferred timetable, but compared to the devastating trauma which I had feared, these irritations were nothing.
That was quite some time ago. And now? I’m back at work full time (and then some), driving and flying all over the U.K. I go walking at weekends, go to the gym twice a week (an entirely new activity for me), and I have just (2006) completed a sponsored assault on the “three peaks”, Snowdon, Scarfel Pike and Ben Nevis, within 24 hours.
Family, friends and colleagues, initially sometimes close to tears, still break in, mid conversation, and say things like, “This is like going back in time 10 years” and, “It’s good to have you back”. My wife, still with her coat caught in the roller coaster, confessed to being scared she can’t keep up with me.
Why, other than by Divine providence, has it worked so well for me? Four reasons:- my donor, the Birmingham team, my family, my friends and colleagues.
Although, pre-transplant, things were diabolical for my wife and family, and difficult for friends and colleagues, all were glad they stuck with it. I am “more better” than any of us dreamed possible. Not merely have I found light at the end of the tunnel, I have found the white heat of challenges and possibilities.
So, is it time to go for my five-bed detached with double garage? No way. The same logic which has Catholics shunning birth control has me feeling I’ve contradicted God’s will. With that on my conscience, I’ve got to use my future to be a force for good.
How? I don’t know yet, but I’m looking.
Finally, if you are anticipating transplant either as a patient, a relative or an employer, take heart. The future may not be Orange, but it has the potential to be more bright than you can dream.
Many thanks to Andy who took the time to write such a frank, honest account of life with PSC and the opportunities his transplant brought.