Belfast Telegraph

Saturday 20 September 2014

Only 12 weeks ago Sean was very ill. Then he was given a liver transplant. And his future back...

...Now, he wants others to have the same chance of life. Sean Lavery, from Aghagallon, tells Stephanie Bell how surgery has left him feeling so much better and appeals for more people to sign the donor register

Special gift: Sean Lavery is enjoying spending time with fiancee Helena Thornton and daughters Eva, (front) and Lily
Sean Lavery before his liver transplant
Sean with fiancee Helena and children Lily and Eva

It's only a few weeks since Sean Lavery's life was saved by a liver transplant and as he continues on the long road to recovery he is overwhelmed by a single emotion – deep gratitude.

Sean's life has been on hold for years as his body succumbed to the worsening effects of liver disease and while he has missed out on many things, including a promising career as a top soccer player, remarkably he says that he has no regrets.

"It's an unbelievable experience and it does strike me the odd time what has happened," admits the 30-year-old from Aghagallon, near Lurgan.

"You get an organ and you get your life saved and you can't help but feel lucky.

"It's so weird and sometimes I wake up and it hits me that I have someone else's liver inside me and that someone had to die for me to get it. In my case it was a 43-year-old man.

"I will write a letter at some point to his family so that they know how well I am doing and that their loved one saved my life."

Sean is well aware of how fortunate he is to have received a transplant.

He says: "There are 20% of people on the waiting list who don't make it because an organ is not found on time and that makes me feel incredibly grateful and it also brings home the importance of organ donation.

"Seven organs can be donated from a single person and that's seven lives which an individual can save or transform.

"So it just shows how important it is for people to consider it and make their wishes known to their family.” Sean, a plumber, is engaged to Helena Thornton (31), a support worker in a children’s home, and they have two daughters — two-yearold Eva and nine-month-old Lily.

Sean has been ill since his daughters were born and even now as he recovers from surgery he is still unable to pick his children up and carry them. Understandably he says that another gift the transplant has given him is the promise of doing fun everyday things with his girls which until now his illness has prevented.

His gratitude goes well beyond the heartfelt appreciation he feels to his donor to encompass his partner Helena, his family and the doctors and nurses who looked after him both in the Royal Victoria Hospital in Belfast and at London's Kings Hospital where he had his surgery.

And giving something back dominates his thoughts in these early days of recovery as he looks forward to the months ahead when he will get his full strength back and normal life can resume again.

He is currently planning a fundraising event to be held on St Valentine's Day next year to raise money for the Royal Victoria Liver Transplant Support Group who provided a home from home for his mother in London while Sean was going through his transplant.

He says: "The support group is amazing. They give financial help to families who have to travel to England and in our case they provided mum with somewhere to stay which was just 100 yards from the hospital. That was invaluable and meant that she didn't have to worry about travelling to see me.

"I just want to support them and give something back."

Sean was just 16 and had the world at his feet when he first took ill. A soccer star in the making, he was playing for Lurgan Town when he was scouted by several premier league clubs including Leeds United, Fulham, Southhampton and Wolves.

He visited all of the above and decided to join Leeds where he played for two years before returning home: "Football was all I did from I was no age. In fact, I didn't put much effort into school because of it.

"I spent two years with Leeds United but I started to get ill and it got to the stage where I didn't have the energy to finish a full match. I was getting homesick too and decided to come home and signed for Glenavon."

Sean, who was also playing Gaelic football, continued to struggle with his fitness when he returned home and started to feel increasingly unwell. His condition gradually worsened and in 2004 he noticed his eyes starting to turn yellow and finally decided to go to his GP, who carried out blood tests.

The tests came back abnormal and Sean was referred to Craigavon Hospital for an ultrasound which showed a cyst on his bile duct.

He then underwent what was a major operation in the Mater Hospital in Belfast to remove the cyst and part of his bile duct. During this complex procedure part of his small bowel had to be used to replace the duct.

He says: "It was a huge operation and I was in hospital for two weeks after it; it was another four months before I got back on my feet.

"They thought that I was maybe born with the cyst and it had got bigger over time; after the operation I just thought that was it and I would be back to normal.

"As it happens, I was okay for about two years and was playing football again for Glenavon and GAA for St Mary's in Aghagallon, then I started to have bouts of sickness. I was generally feeling unwell and my energy levels were low."

He went back to his GP and was referred to the Royal Victoria Hospital where a series of tests and scans revealed scar tissue on his liver. Doctors continued to monitor his condition, performing scans every six months for the next three years.

The concern was that he was at risk of developing cirrhosis and two years ago he was given the shattering news that he did have the disease, which is unstoppable.

He says: "There was no coming back from that, my liver was dying. As soon as they told me it was cirrhosis my condition went downhill very quickly.

"For two years I tried to go to training and do things, but I wasn't able to and that annoyed me more than anything.

"They kept telling me I wasn't at the transplant stage. Apparently with a liver transplant timing is crucial. There is a tipping point and if you get it too early or too late, it doesn't work.

"Last May they told me that I was ready and that I needed to go on the transplant waiting list. I went to King's Hospital in July and met the transplant team who explained everything to me."

By that stage Sean was very ill. His weight had dropped to below 10 stone, which at 5ft 7ins tall made him appear very gaunt.

In December of last year he was told he was in the top five on the transplant list and finally at 1am on April 17 of this year he got the call he had been waiting for.

He recalls: "By that stage I was totally fed up and feeling sick all of the time. I had no energy and was unable to sleep.

"Physically I looked so bad I didn't want people to see me so I was more or less spending all my time in the house.

"Mum's life was restricted, too, because of waiting on the call that an organ was available. Even if she went out for a meal she would panic and would have started texting me to check whether I'd heard from the hospital.

"Within an hour of getting the call we were both in the airport and we left for London on a private plane at around 2.20am.

"We were met in London by an ambulance which took us straight to the hospital."

Sean underwent his operation later that day and was in surgery from 2pm until 10.45pm.

He spent three days in intensive care and returned home to Northern Ireland just 12 days after his transplant.

"I felt brilliant straightaway and I've been gradually building my energy up," he says. "I couldn't eat before the operation and now it's great to have my appetite back.

"I go for a walk once a day and feel tired after it. I've been told it will be between three and six months before I get my full energy back. But I feel as if my life had been on hold and now I'm getting it back again. I couldn't plan anything and now it's like I have been given a second chance and can start doing things again like being a dad, playing football and getting back to work."

Through it all, the support of his fiancee Helena has been hugely important.

"Helena and I have been together for six years and she has been through a lot with me and she has been unbelievable in the way she has done everything," he says.

"I have tried to do as much as I can. Eva knows I can't lift her because daddy has a sore belly but I'm looking forward to being more active so that I can do things with the children.

"I'm happy for my family, they really see a difference in me and I'm just glad they don't have to worry anymore.

"I am on anti-rejection tablets and I have to go to the Royal every two weeks at the moment. As time passes, that will go down to once a month and then eventually to once a year. I will always have to have check-ups.

"The team there is amazing and you just trust them and know that they are doing their best for you."

Sean feels strongly that there is a general misconception about the causes of cirrhosis of the liver, which can be due to alcoholism.

He personally has had to endure comments and suspicions that his condition was the result of heavy drinking which has been distressing for him and his family.

"People think if you get a liver transplant then you must be a heavy drinker but for most people who get a transplant it is because of other health issues," says Sean.

"It isn't nice to know that people think that you've been drinking. In general, I think there is a naivety about the whole thing and not enough education about it. There is still a stigma if you have cirrhosis of the liver and that needs to change."

As he looks forward to the future Sean is acutely aware of how many others are still waiting on organs for life saving transplant surgery. He has been in touch with GAA pundit Joe Brolly to offer his support for his Opt for Life campaign which aims to change organ donation in Northern Ireland to an opt out system.

In October 2012 Joe donated a kidney to his friend Shane Finnegan, though sadly that transplant failed and the organ had to be removed a week later.

Also, as National Transplant Week focuses this week on getting more people to sign the donor register, Sean is keen to do what he can to publicise the cause.

He says: "Even if people don't join the register but just tell someone in their family what their wishes are, that's all it takes.

"I think if people realise that rather than letting their organs go to waste they are saving someone's life then hopefully they will have that conversation and let their family know what they want to do as ultimately it will be the family who decides."

In the meantime, Sean is planning a charity night in aid of the Royal Liver Transplant Support Group.

He has booked well-known hypnotist Adrian Knight for the Seagoe Hotel in Portadown on Valentine's night and hopes to sell more than 300 tickets. Those supporting him will also enjoy dinner and the chance to win some superb prizes in a charity raffle.

He adds: "It's giving me something to focus on while I get my strength back and I hope if all the tickets sell we will raise between £4,000 and £6,000 for the charity."

How to join donor register

  • Although almost everyone would accept an organ if they needed one, just 32% of the population in Northern Ireland have joined the NHS Organ Donor Register.
  • Around 15 people die here each year while awaiting a transplant.
  • 84% of the population here are in support of organ donation.
  • Just 38% of people here have discussed their wishes with their loved ones.
  • Only 55% of families agree to donation going ahead if they are unaware of their loved one's wishes.
  • On average one person dies in Northern Ireland every three weeks because they don't receive the vital organ they need.
  • To join the Organ Donor Register, visit www.organdonationni.info, text DONATE to 62323, or call the NHS Donor line on 0300 123 23 23.

A divisive issue ...

  • A Stormont debate on organ donation in Northern Ireland saw a split this week in party support for two opposing Bills on the issue.
  • The DUP's Jim Shannon voiced his support for the campaign being led by Ulster Unionist Jo-Anne Dobson.
  • Jo-Anne has been lobbying for a "soft opt-out" option through a Private Member's Bill since December 2012.
  • Under it people would automatically give their consent for donation unless they indicate their objection with families given the power to make the final decision.
  • Political waters were muddied when DUP MLA Alastair Ross subsequently launched his own Private Member's Bill for an opt-in system via drivers' licences.
  • Shannon this week backed rival Dobson and called for better education on the issue through campaigns in schools, television and GP surgeries.

Why you need to tell loved ones

The Public Health Agency (PHA) is urging everyone in Northern Ireland to "spell it out" when it comes to their organ donation wishes by telling their family and friends that they want to be a donor and by signing the NHS Organ Donor Register.

Dr Eddie Rooney, chief executive of the PHA and chair of the Northern Ireland Committee for Organ Donation, says: "The number of people who have signed the register is quite low at just 32% of the population. Most importantly, we need everyone to discuss their wishes with their loved ones – only 38% of people in Northern Ireland said that they have done this.

"We need to change these figures – there are still around 160 people waiting for a transplant and around 15 people die in Northern Ireland each year while waiting on one.

"Many people don't realise that by not making their donation wishes clear their loved ones will have to make a decision as to whether or not donation should go ahead without prior knowledge of what their loved one wanted.

"Nobody wants to leave their family with such a burden.

"If you want to be an organ donor, join the register and tell your family and friends as soon as possible."

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