Amazing chain of kidney transplants meant Susan could give Gary his life back

AFTER 18 happy years of marriage, Edinburgh couple Gary and Susan Robertson know sharing everything is important.

But Susan kept the biggest secret of her life from Gary the fact she was going to give him his life back through a kidney transplant.

Gary, 45, only realised his wife was going to end his years of agony as they headed to a vital medical appointment.

Transforming Gary’s health involved an amazing exchange a chain of life involving six people from all across the UK.

And hairdresser Susan, 42, was faced with an agonising dilemma.

Helping her husband might mean denying a lifeline to her two boys, who have a 50/50 chance of needing a kidney, too.

The fact that a transplant might be required came as no shock to Gary, a gas industry network officer. Both his mum Lillian and grandfather John also had polycystic kidney disease which results in cysts developing that ultimately cause kidney failure.

“I’m the third generation who has had a transplant,” said Gary, whose story is told in a new BBC Scotland series Transplant Tales.

“My grandad had his when he was 61 in 1972. It was the very early stages of transplantation and while the surgery went well, the drugs at the time weren’t great and he died from pancreatitis not long afterwards.

“Then my mum had hers, also at 61, nine years ago. She’s doing fine.”

Because of the family history Gary was tested and diagnosed with the condition aged just 18. But although he had increasing health problems, it wasn’t until he was 42 that his kidney function plummeted and dialysis was the only option.

“It wasn’t great being chained to a bed for five or six hours a day,” explained Gary. “It’s a pretty ruthless regime.

“It had a huge effect on family life. Dad might have been in the house but he wasn’t able to do anything.

“I couldn’t take them out anywhere, couldn’t play football like other dads.

“I got tired so easily and grumpy. Susan certainly got the brunt of it but the kids got a bit, too. I didn’t have any patience.

“It wasn’t a nice time and we really didn’t have a family life for more than a year.”

Sitting by his side at their comfortable house in Currie, with sons Murray, 13, and Sean, 10, playing outside, the closeness and love Susan has for the man she’s spent most of her life with is clear.

“I’d seen the deterioration in him over a few years,” she says quietly.

“So even before he went on dialysis I knew he wouldn’t cope. It was awful living with someone who wakes up in the morning and dreads what the day ahead holds. He had basically lost the will to live.

“So even before he went on dialysis I’d already decided I’d do whatever it took, and that included donating one of my kidneys.”

Every year some 4500 people receive a new kidney, liver, lung or heart. But many more patients are waiting in the UK and three die each day before the vital transplant.

Currently around a third of all transplants use organs from living donors.

Knowing he’d never ask, Susan put herself forward.

“She basically went behind my back,” smiles Gary. “She told me we were going to the clinic and just before we went in she said, ‘I think I’d better tell you something’ and opened up to me.

“She was really my only potential live donor but it was a real shock. When she makes her mind up, though, it’s very difficult to get her to change her mind.”

If Murray or Sean prove to have the condition, donating to Gary means Susan can’t offer them help.

“I obviously had to think about that but I don’t know what the future holds,” says Susan.

“I might end up having a health problem that meant I couldn’t help them anyway. But I knew that I could help Gary now.”

Although Gary and Susan weren’t a suitable blood or tissue match, the transplant service has had to become ever more creative these days with such a shortage of organs.

Donor and recipient pairs can swap donor kidneys with another donor and recipient duo in a “paired” donation.

But Gary and Susan found themselves in a “pooled” donation chain.

Jen Lumsdaine, live kidney co-ordinator at Edinburgh Royal Infirmary, said: “In Susan and Gary’s case it was even more complicated.

“In a three-way exchange, we have six people involved and three different centres.

“It is very difficult. We have to ensure all the operations are on the same day and start at the same time.”

But with all the plans in place, and three medical teams, willing donors and desperate patients on standby the simplest of things pulled the plug on everything, for Susan woke up with a cold.

“I was absolutely devastated when they told me they couldn’t go ahead as I had to be totally healthy.

“I just burst into tears. I felt that I had let everybody down.

“My heart went out to all the other people involved. We needed them as much as they needed us and just because I woke up that morning feeling lousy the whole thing was off.

“I came home from the hospital fearing that someone might not wait and if they pulled out it might never go ahead.”

Fortunately the chain didn’t break and the medical marathon was rescheduled.

As Susan underwent a three-hour operation to remove her kidney, two similar surgeries were taking place at other transplant centres elsewhere in Britain.

The three-way swap then took place with one of the organs being rushed to Edinburgh where it was transplanted into Gary.

“From the minute I saw him after the operation he looked completely different,” said Susan.

“I think he gave me a thumbs-up and I blew him a kiss and told him I loved him.”

After a life that had been put on hold and had precious little in the way of fun, the transformation in the whole family has been little short of remarkable.

“Before it was like I was walking through a thick fog with music blaring in my ears,” adds Gary. “I was tired all the time and couldn’t concentrate.

“Now we’ve got our family again. I can play with the boys, go out for a meal and just have a laugh.

“I’ve got my life back.”

n Transplant Tales, BBC One Scotland Monday 9pm.