Belfast Telegraph

Tuesday 2 September 2014

Orla Smyth: The mystery donor who transformed my life

Orla Smyth, a Belfast solicitor, on the mystery donor who transformed her life

New perspective: Orla Smyth says being unwell made her appreciate what it is to be healthy
Orla Smyth showing off her medals after the British Transplant Games
Good cause: MLA Jo-Anne Dobson's son needed a transplant

Orla Smyth juggles a high-flying legal career with the punishing training schedule of a world champion athlete. This year, the Belfast solicitor's hard work saw her make a clean sweep of seven gold medals in the World Transplant Games in South Africa, setting three world records along the way.

Add to this a passionate and very active involvement in the charity Transplant Sport Northern Ireland and there is little room for the 34-year-old to pack much more in to her very full life.

Inspirational Orla optimises just how "life giving" it is for people to donate their organs.

Just a few years ago she suffered life-threatening liver failure and spent three-and-a-half years waiting for a kidney transplant.

For such a sporting person it was agony having to spend every single night sitting still for eight hours, hooked up to a dialysis machine. It left Orla with barely enough energy to walk any distance, never mind run and her biggest fear was that she might never run again. As for organising even the simplest social activity, it just wasn't an option.

Her illness happened just as she was finishing the last year of her law degree at Queen's University, Belfast, and she continued with her solicitor's training while sacrificing everything else to receive her treatment at night.

Thanks to a transplant, today Orla – who works as an in-house lawyer in the Business Acceptance Unit of London-based international law firm Allen & Overy – is on top of the world, making the most of her restored health.

This year she showed what determination can achieve when she returned to Belfast from Durban with a gold medal from every single event she competed in at the 2013 World Transplant Games.

She broke three world records in the 400m, 800m and 1,500m.

But it could have all been so very different if she had not received a life-saving transplant operation which has made Orla passionate about promoting organ donation. She was delighted to be given the chance to write to the family of the deceased person whose kidneys she received and tell them just how much that gift of life has enabled her to achieve.

She says: "It was quite important for me to do that as it was a gift – and the gift of life.

Orla was only 11 when doctors discovered she had a degenerative kidney condition. Yet even though both of her kidneys were functioning at just a third or less of their full strength, she was able to live a normal and active life throughout school and much of university.

She was a keen sportswoman in her teens, playing football for the Northern Ireland under 16s and under 17s teams.

At university she discovered GAA and became equally as passionate about that. And it was through that sport that Orla met her husband Declan Morgan (35) during her first year at Queen's, where he was studying to be a teacher.

It was when she was 21 that life as she knew it was shattered, when her kidneys began to rapidly deteriorate.

She says: "Up to that point my condition had never interrupted my life but then when I was at university my renal function deteriorated substantially. Even though I always knew I would end up on dialysis, I don't think I really took it in.

"When I was 24 I had a transplant but it wasn't a success and after three months I became very ill.

"I then had to go on dialysis and wait for another organ. I continued to train to be a solicitor and spent every night on dialysis for eight hours. When you factor in the time it took to set up the equipment, it went on for nine and a half hours each evening..

"When I look back I only realise now how unwell I was. It was the really small things like not being able to be spontaneous and head off with friends for a weekend or out to the cinema which was really hard. A lot of my friends were going travelling and doing things I would have loved to have done."

While it was difficult for her to accept that life had to stand still for three years while on dialysis, she is incredibly grateful to have been given the chance of life-saving transplant surgery.

Looking back, she says those three years have given her an appreciation of her health, which has driven her in her athletic career. "It's funny but at the time, it was just part of my life. I got up every day and went to work and didn't have the energy for anything else," she says.

"I was in limbo, always waiting and hoping an organ would become available. I had to get on with my life, even though I was not really that well.I felt like I was waiting for my life to start.

"Your perspective on everything completely changes.

"You realise, 'My God, this is what it feels like to be really ill', and although it sounds cheesy, you really are given a second chance at life. After my transplant I just wanted to do something and get fit again. Running and training gets addictive and I have grown to love the training.

"When you go through something like that it really gives you an appreciation of what is important in life and to me that is my health, my family and my friends.

"Knowing I'm alive because someone is dead and passed on their organs to save my life changes your perspective.

"I do train hard but I love it and I love the fact that I am healthy and able to do it."

In preparation for the games Orla ran for an hour-and-a-half four times a week and also completed two strength and conditioning training sessions and two yoga classes.

She first entered the British Transplant Games in 2009 and again in 2011, winning a clutch of gold medals at each.

It was at the 2011 games in Sweden that she set world records in the 400m, 800m and 1,500m distances – none of which have been beaten by any other athlete.

Having by now gained a reputation as a top athlete, she was apprehensive this year in the run-up to the Durban Games that she would not live up to people's expectations, having had a series of injuries, including a stress fracture.

She need not have worried. She won the 5,000m road race, which is the first event in the games, and six other events. Her haul of gold medals helped Great Britain and Northern Ireland win the overall medals table for the first time. Competing across a range of distances – from the 200m sprint to the 5,000m road race – it is a remarkable achievement, borne of dedication, fitness and tactics – especially in the 800m, which is Orla's favoured distance.

She says: "The atmosphere at the Transplant Games is so unique. You do not get the chance to meet people like that in everyday life – people who have had heart transplants and other life- saving surgery who are pushing themselves to the limit.

"Going to South Africa I was concerned because I struggled with a stress fracture in my right tibia and a threatened fracture in my left tibia. I came away with a full fracture in my left tibia."

The Games – held bi-annually – involve around 1,500 athletes from some 69 countries and are open to anyone who has had a major organ transplant, both to celebrate the athleticism of the participants and to raise awareness of the need for higher levels of organ donation.

Orla is heavily involved in promoting athletics for those who have had organ transplants and leads by example.

She is secretary of the charity Transplant Sport Northern Ireland, which works to support transplanted individuals and promote the Organ Donor Register. She is a volunteer champion, encouraging more people to come forward to become volunteers in their community.

She says: "I am passionate about our charity and promoting the message that everyone who has had a transplant needs to keep well and fit and healthy.

"Taking part in sports of any kind, not just running, really helps to achieve this."

And she wants people to discuss becoming organ donors.

"People think it will never happen to them and so they don't talk about it.

"I want to get across that it's not a scary topic and encourage people to talk to their family and friends, as it is important that they know their wishes so that when it comes to that really difficult time, they know exactly what the person wanted.

"I do support the soft opt-out system, which very much involves the family, who will have the final say. It is so hard to watch people getting increasingly sick while waiting on a transplant and knowing that it is completely preventable.

"I'm passionate about getting that message out that when you receive an organ it really does make a difference.

"I have been an ambassador for the 'Opt to make life your legacy campaign'. I was lucky and others aren't so lucky. I know people who have been waiting 16 years on a transplant."

Orla loves her job and has been able to do flexible hours to accommodate her training, and she appreciates the support from her company. Allen & Overy is an international legal practice with approximately 5,500 staff, including some 513 partners, working in 42 offices worldwide

She says: "I've been a lawyer for 10 years now and have been working for A&O for a year and a half.

"I love it. I really enjoy the work and my colleagues are brilliant. They are very understanding and flexible, accommodating my charitable activities as well my time off to compete. They are so encouraging and supportive and I can't thank them enough."

The next world games are in Argentina in two years time, when she will be aiming to retain her world titles. In the meantime, she hopes to train for the annual Mourne run next June, which is a 26.2 mile race across the mountains.

She adds: "The World Games are too far ahead to worry about now so in the meantime I am enjoying hill and dale running and hope to do the Mourne Half Marathon and then the full Mourne Marathon in June.

"I love the feeling of running in the mountains – you feel like you are the only person in the world and a very small part of the big picture."

How you can help save lives

In Northern Ireland, 190 people are currently waiting for an organ transplant.

Up to 15 people die each year waiting for a new organ.

Last year, 123 transplants were carried out in Northern Ireland but demand is at an all-time high, having jumped by 40% since 2001.

Only 31% of the population has joined the NHS Organ Donor Register. A new survey shows around 33% of people in the province don't know how to register as a donor.

And the report by the Public Health Agency shows that while 78% of respondents say their wishes should be discussed with loved ones, only 38% have actually done so. By becoming an organ donor, one person can help save or significantly enhance the lives of up to nine others.

The research also found that just over half (56%) of respondents were in support of changing the system to a soft opt-out or presumed consent system – although only 29% had been aware of the current debate around organ donation.

Out of the 18% who were against the change, just over half said this was because they felt it would remove choice or take control away from them.

Ulster Unionist MLA, Jo-Anne Dobson, who has led the campaign for a soft opt out system here, says she was encouraged by the findings.

"I'm really looking forward to continuing to work alongside the Public Health Agency as my bill progresses through Stormont," she adds. "It is crucial that we find a way to bridge the gap between 90% support from the public for organ donation and only 30% signing up to the current Organ Donor Register.

"That's why I believe my bill which would move Northern Ireland down the same route as Wales, presents the best solution."

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If you have not signed the ODR, you can fill in a form online at www.organdonation.nhs.uk, or text DONATE to 62323 or telephone the NHS Donor line 0300 123 23 23. It is important that you discuss your wishes with the people closest to you so that, in the event of your death, they will find it easier to carry out your wishes.

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