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Double transplant patient takes part in Etape Loch Ness to honour donors who gave him second – and third – chance at life


By Andrew Dixon

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Rory Mair will be taking on Etape Loch Ness to honour the two liver donors who gave him life.
Rory Mair will be taking on Etape Loch Ness to honour the two liver donors who gave him life.

WHEN Rory Mair saddles up to take part in one of Scotland’s best-loved cycling events, it will not only be the thrill of completing his own personal challenge that drives him towards the finish line.

The 62-year-old will be taking part in Etape Loch Ness to honour two organ donors whose generosity in death has allowed him to go on and lead a full and active life.

He has had two liver transplants in the past seven years after developing Primary Sclerosing Cholangitis (PSC) – a condition which would have almost certainly led to his own death had donor organs not been found.

“Organ donors are amazing: not only do you have these incredibly generous people to thank for your life, but in that period when you are ill and waiting for a transplant, they give you something invaluable – they give you hope,” he said.

“You don’t know them, you will never meet them, yet they are responsible for getting you through that time. However, that hope is tinged with regret that somewhere else, another family will be experiencing the pain of losing a loved one.

“That generosity and kindness makes you feel very responsible towards the donor to make the best use of the gift they have given you. You want to make sure that you do justice to the donor, not to use the organ only to stay alive, but to have a full and active life.”

Mr Mair, from Fortrose, developed PCS – a condition where the body’s immune system attacks the bile ducts in the liver – several years ago. Over time, his liver failed to the point where it was no longer able to get rid of toxins and he was told that a transplant was his only long-term chance of survival.

Despite his failing health, he was able to continue in his role as chief executive of local government body the Convention of Scottish Local Authorities and kept himself as active as possible after being told that the fitter and stronger he was going into the operation, the better his recovery would be.

After undergoing what he described was an almost perfect operation at the national transplant unit in Edinburgh in 2012, he returned to work just eight weeks later.

The grandfather completed Etape Loch Ness – a 66-mile cycle event around the world-famous stretch of water – in 2014 to pay tribute to the donor who gave him a chance at life thanks to their decision to join the organ donor register.

However, Mr Mair faced a setback in 2016 when the PCS returned – there is a 40 per cent chance that the disease will come back even after a transplant because the fundamental issue lies in the autoimmune system as opposed to the organ.

Mr Mair’s liver started degenerating and his health rapidly deteriorated. His weight had dropped to just 52kg and he was being fed through a tube when doctors told him they had been able to find a donor and he would undergo a second transplant.

Due to the fact that he was so ill, his recovery took much longer but as he started to regain his health, his thoughts once again returned to ensuring he honoured the generosity of his donor.

Rory Mair.
Rory Mair.

“I thoroughly enjoyed taking part in Etape Loch Ness despite the fact that my wife, Gay, is a much better cyclist than me and had to help and encourage me around the course,” said Rory, who is now chairman of Citizens Advice Scotland.

“I loved every minute of it, even though I had to get off my bike and push on the King of the Mountain stage. I always wanted to do it again, but the problems resurfaced with my immune system and I was never quite well enough.

“After the second operation I decided that I would do it again just to show that I could, and that I was so grateful for the fact that I could. I know that I won’t have the fastest time, but I’m not that bothered at all about how long I take. The only thing that matters is that I can do it.”

He will be among 5600 cyclists have signed up for the Etape Loch Ness which takes place on closed roads on April 28.

Many will be riding for charity – including the official charity partner Macmillan Cancer Support – and for good causes close to their hearts.

Mr Mair hoped that he can make more people aware of the organ donor register – and most importantly the need to talk openly and candidly to their family about their final wishes.

He said: “If someone fell in the water and was drowning, most people would jump in to try and save them. But, in reality, very, very few of us will ever encounter that kind of situation and have the opportunity to save someone’s life.

“By donating your organs after your death, you have that chance. You could make a difference to three, four, even five people. But the most important thing of all it to talk to your family and tell them what you want to happen.

“Even though you may be on the donor register, your family will have the final say on what happens to your organs, so it is very, very important to talk to people about it.”

The Etape Loch Ness event hub will be set up over the weekend of April 27 and 28 at Eden Court in Inverness. Participants and their supporters will be able to browse a number of stands set up by event partners, and enjoy a range of local food products.

General entries for Etape Loch Ness were sold out within a matter of hours after going on sale, but there are a limited number of places still available for riders who pledge to raise a minimum of £100 for Macmillan Cancer Support.


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