Devastating diagnosis left Joe on the brink with organ donor his only chance

Because up there in bed is my husband. And he’s dying.

It’s not a particularly attractive way to go either. His torso is bloated as toxins and mush from a liver that is quite rapidly packing up flood him till he’s so huge he can no longer bend down to tie up his shoelaces.

His arms and legs have wasted to stick-thin skin and bone, the flesh hangs off arms which were once strong, his thighs are those of a man who’s spent rather too long in a concentration camp.

And his skin is a dirty ochre-mustard colour, eyes sunken and what should be the whites glowing sickly yellow, all of which is quite fascinating for a little boy who isn’t fully conscious of just what is going on with his dad. “Please Dad,” our son pleads, “can you still be like that at Hallowe’en because you’ll be great for scaring people when we go treat or  treating?”

On his ninth birthday last September, our little boy waved his father off for his umpteenth trip to hospital, not for a second thinking that he might not see him again, just quite sad that dad wasn’t going to be with him to help him eat some birthday cake and see him play with his new scooter.

But at least we had hope. A liver transplant could save his life. It’s an enormous operation, no guarantees, but a tiny speck to focus on in what was undoubtedly the blackest, scariest and worst journey  imaginable.

Today, there is more hope for many in the form of incredible news that Scots are leading the way in signing up to be organ donors, with more than 2.1 million of us on the register, an amazing 45 per cent increase over the past five years.

For families waiting for the phone to ring, this is truly an answer to their prayers. It’s a flicker of encouragement at a desperate time when hope is nearly all that’s left, it’s a tiny, gossamer-thin lifeline to keep them going when every morsel of energy and positivity has almost run dry.

Waiting for an organ transplant is unlike just about any other kind of waiting. Wait for a bus and there’s a fair chance you’ll get where you’re going eventually. Wait for a job interview, or in the queue at the Post Office, or for your Domino’s pizza to arrive and it’s likely that you won’t spend it hovering in the ether between life and death, only to start waiting again the next day and the day after and the day after.

Every single day the phone doesn’t ring is a miserable day lost, when it could have happened but it didn’t, maybe it did for someone else and now who knows if it ever will?

We’d go to bed each night shrouded in a suffocating mixture of relief and anguish. Scared because we knew that this was a difficult operation that brought the threat of  massive complications – one potential side-effect of liver transplant surgery is death, and that’s a fairly serious complication if you ask me – and deep, agonising despair because without the call we’re a day closer to the unthinkable.

Sleep, when it came, was a restless beast, subconsciously alert and waiting for a call, me jolting awake from a bad dream and prodding him out of his deep motionless rest to check he’s actually alive – a grunt and a swear word confirmation that the Grim Reaper was being held at bay – dawn bringing another 24 hours of wondering if this will be the day it happens.

To our deep shame, neither of us had really given huge thought to the notion of carrying an organ donor card until this all started last year. Like many, we trotted along aware that organ transplants are fantastic things but not bothering to give it that much consideration because talking about dying is somehow going to tempt it along, or because we had other things to do, or maybe we just couldn’t be bothered signing a form and posting it.

Amazing how suddenly finding someone you love is among the 600 or so Scots waiting – not patiently but very impatiently, for this is life or death – for an organ transplant focuses the mind and makes you sign that form.

Joe had been diagnosed with a relatively unusual auto-immune condition called primary sclerosing cholangitis (PSC). He’d gone to get the results of liver scans and tests two days before Christmas 2011. “Have I got cancer?” he asked the consultant. “Cancer we can cure,” came the blunt reply, “this we can’t.”

It turned out PSC had been lurking for years unnoticed. Now it was in its final stages, gnawing its way into his liver, destroying it.

Back and forwards to hospitals. There was a painful, terrifying week being assessed to see if he might be suitable for a transplant, the final  verdict – like nervously waiting for a death sentence – delivered in a waiting room on the second floor of the ERI, a vase of plastic flowers on the window ledge, some arty prints of Edinburgh scenes on the walls, us searching the three stony faces opposite us for a clue: would it be yes, would it be no, does Joe live, does Joe die?

“Yes” is just part of the battle. Next is the not insignificant challenge of trying to stay alive long enough to stand a chance of getting an organ and healthy enough to actually survive the surgery.

The clock was ticking. My 53-year-old husband’s liver just might carry him through a year, realistically a lot less.

So what do you do when you’re dying?

Forget the bucket list of  wonderful things to do like plunging out of planes and walking the Great Wall of China, because a common side- effect of dying is that you are very, very ill. Walking to the car is enough effort for most days, trying to keep on top of a financial nightmare at home, with one wage earner suddenly no longer bringing home the bacon, is all-consuming. Spare cash is for buying food, paying bills and feeding the voracious appetite of the car park machine at the ERI, not jaunting off to Disneyland.

The kids, aged 13 and nine, scared and in need of reassurance, seek attention but he’s too tired, too ill. They ask questions like “Is Dad going to die?” and we blunder through answers trying to be honest but upbeat, not too terrifying but not an outright lie either.

Family life is tense – there aren’t many laughs when the man sitting in the corner is a sickening Homer Simpson shade of yellow, hands frozen into a claw as one of many random spasms takes hold, he’s itchy, desperately tired, frightened and silly arguments over Xboxes and who said what are enough to make him blow a fuse.

And still we waited.

When the call came that he was in high dependency fighting off a near fatal attack of sepsis, I was in bed at home. Remarkable how quickly a lardy middle-aged mother-of-two can shift from sleep to getting dressed and into a car when the phone rings at 2am and Wendy, the transplant co-ordinator, is on the other end.

The eight-hour transplant surgery was brutal but successful, recovery painful, a slow, rocky road of weeks in intensive care, tubes and physio, but compared with the alternative, a breeze. Now not a day passes that we don’t stop and think of the donor, their grieving family, the brilliant hospital staff, the incredible ERI surgeons and every other poor soul going through what we went through.

Talking about it, though, is harder, like venturing into a messy no man’s land where everything is too raw and too hard to pick over and instead it’s skimmed over, self-protection against the emotional turbulence it brings – living with a transplant also means ongoing worry that something sometime might go wrong – perhaps imagining that if we don’t revisit it, then none of it might have been true.

But we know we have been very lucky. And for us to be lucky meant someone else ran out of luck. It would be easy to let that haunt us, instead we hold on to the hope that for them and their family, this is what they wanted: one husband, patched up and repaired. And our wee family that limped along for a year, a little bit battle-scarred but all four of us still here, organ donor register most definitely signed.

• Join the Organ Donor Register by calling the NHS Donor Line on 0300 123 23 23 or texting SAVE to 62323.

LANDMARK ACHIEVEMENT

A record-breaking number of Scots are now on the NHS organ donor register in what has been hailed as a landmark achievement for the NHS.

Around 40 per cent of Scots eligible to be on the list have signed up, compared with 30 per cent south of the Border.

In the past 12 months, the highest ever number of organ transplants was carried out from live and deceased donors, with 285 Scots undergoing life-saving surgery.

The number of deaths of patients on the waiting list dropped to 34 in 2012-13, from 55 in 2007-8.

A total of 2,147,995 Scots were on the register as of April 4 this year, compared with 1,479,103 in

2007-8.