I’M AT ONE of those monster truck shows with the kids, the kind where there’s lots of metal crunching and – rather appropriately, as it happens - death-defying going on.

There’s a man next to us. He’s vaguely familiar, the same height and the same hair as my husband, he’s got his hands on my nine-year-old’s shoulders, telling him to look at the size of the wheels, flicking the wee guy’s hair away from his eyes.

He sounds like my husband – same rasping Glasgow accent – and he’s calling me Sanny. That’s what Joe calls me.

But this man has dayglo yellow skin, the whites of his eyes are a weird mustard colour and his clothes – layer upon layer despite it being a warm evening - are hanging from his bony frame.

HeraldScotland: Joe, following surgery

It’s not the first time that I’ve turned to say something to my husband and been suddenly shocked by the external ravages his disease has inflicted.

Inside, his liver is in rapid decline. The bile ducts have shrivelled, the bile which they should whisk away from the liver to the gall bladder and the small intestine to break down food, is trapped. As a result, the liver cells have become inflamed and irreversibly scarred.

We’d found out a few months earlier - two days before Christmas - that he had Primary Sclerosing Cholangitis. He was scared he might have cancer, discovering instead that he had a relatively rare condition that would kill him unless he could cling on – and be lucky enough - to receive a liver transplant, was a bit like discovering his lottery numbers had come up only to realise he’d forgotten to put on the ticket.

I gathered up the kids so he could digest the news and disappeared to the cinema to google ‘primary sclerosing cholangitis’ and ‘life expectancy’ under my coat while they watched who knows what.

Primary Sclerosing Cholangitis is one of those pesky auto-immune conditions that no-one knows much about other than it’s a bit of a bitch. Some – like tennis player Elena Baltacha, diagnosed at just 19 - can tick along with medication keeping the worst of the illness’s impact at bay for a few years at least.

However, PSC brings a heightened risk of various cancers. Liver cancer turned out to be Baltacha’s harshest opponent.

For us, a liver transplant brought hope, even if it was a single throw of what seemed to be a heavily loaded dice.

There’s nothing like discovering someone close to you needs an organ transplant to focus the mind on the statistics. Three people a day die waiting for an organ transplant; right now, there are around 570 people on the transplant list, wasting in front of their families’ eyes.The last decade has seen a massive 89 per cent increase in the number of Scots carrying a donor card – 45 per cent of the Scottish population are on board – yet there’s still a desperate need for more.

And because just one per cent of us will die in the right circumstances for our organs to be of any use, there’s no risk of there being too many names on the register.

We quickly found getting on the list is far from a given. Staying on it before dying, harder than it sounds.

The next few months would see a devastating false alarm when a donor liver was found then snatched away again, life-threatening sepsis, countless days in intensive care and high-dependency.

Life on the transplant list becomes a delicate balance between soldiering on and howling at the moon. People stare in the street at the man with the weird yellow skin and you just know they’re thinking ‘drink’ or ‘drugs’ and definitely not ‘primary sclerosing cholangitis’.

From barely giving a moment’s thought to the organ donor register a few months earlier, I become borderline obsessive about banging the drum for it.

It suddenly seems ridiculous that people need to be encouraged, their squeamishness and sometimes downright silly excuses not to sign the register make my blood boil, every mention of a family who agree to donate a loved one’s organs in their time of grief leave me overwhelmed, filled with gratitude and admiration.

At home we walk on eggshells; fear mixed with stress creates a short fuse, small problems or issues which we used to just brush off become the last straw.

Forget making the most of every moment and ticking off the bucket list. We’re down to one wage-earner while trips to and from Forth Valley Royal and the transplant unit at Edinburgh’s Royal Infirmary leech away our energy, time and money– fuel costs, parking costs, someone to take the kids away for the afternoon because God knows they need a break from this hell too, costs.

News of a donor organ came one September morning. As doctors went through final checks, we were in a weird middle world of discussing domestic chores like paying the electricity bill - far less stressful than thinking this might be ‘it’.

Eights hours of surgery came and went. One diseased, useless liver out, healthy one in; a process that involved a massive team of exceptional NHS professionals from the specialist nurses who gently guide grieving families, to the co-ordinators who hold the hands of families like ours; the surgeon who, after hours of intense surgery returned to the ward hours later ‘just to check’; the intensive care nurses who stayed by his side and theatre staff who every day see miracles happen.

Between physiotherapists and nutritionists, the local GP and the reception staff whose eyes welled when they heard that a donor had been found, the porters, ambulance staff and auxiliaries who knew when to crack a joke and when to stay quiet, the NHS in all its life-saving, death-defying glory was simply spectacular.

Six years on, and the kids have outgrown monster trucks, the yellow tinged stranger is a memory and we’re all still here… every grateful to the selfless gift of a grieving family and a remarkable health service that seems to love a challenge.