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In hospital awaiting her third liver transplant, Lucia decided to become crusader for organ donation and 'Live Loudly Donate Proudly' was born

Lucia with sister Alice
Lucia with sister Alice
Lucia in hospital after one of her ops
Lucia with a sign for her campaign
Eileen and Sean campaigning for organ donor registration

The Ballycastle teen tells Stephanie Bell about her tough battle against the odds, her gratitude at being given three chances at life, and her campaign to educate our children on the issue and persuade many more people to become donors.

An inspirational teenager who has come through three lifesaving liver transplants is driving a new campaign to get everyone thinking and talking about organ donation. Lucia Mee (17) from Ballycastle has battled serious ill health for the past nine years and was gravely sick in hospital waiting on a third transplant when she came up with the idea for Live Loudly Donate Proudly.

Now an established campaign with its own website and growing presence on Twitter, Instagram and Facebook, Live Loudly Donate Proudly is Lucia's way of saying thanks for what she considers as her three chances at life.

She says: "I owe my life three times to organ donors. I think it is so important for people to know you don't need your organs after you die. To donate them is to give someone else hope that they can recover and do the things they like to do and live their lives.

"The campaign is about getting people to focus on having the conversation with their families about their wishes on organ donation and signing up to the donor register.

"It is almost more important that they have the conversation to let loved ones know their wishes. It will be their family who make the final decision, and if they don't know your wishes, they are likely not to go ahead with organ donation."

It seems a simple enough request, but a lack of organ donations is costing hundreds of lives every year.

Lucia has been through much since she first took ill at eight.

She missed many months at school and was forced to spend a lot of time at home or in hospital, which became the norm for her as a child.

Growing up, she has coped brilliantly with the trauma of having two transplants which her body rejected, and is now enjoying a new quality of life since her third major surgery in 2015.

Studying for her AS exams at Cross and Passion College in Ballycastle, she recalls how as an eight-year-old her condition became critical very quickly: "I have been in and out of hospital for half my life now.

"I was eight when my mum noticed the whites of my eyes were very yellow and took me to our GP, who sent me to Causeway Hospital.

"I had a night or two in there and was then sent to the Royal Belfast Hospital for Sick Children.

"They knew something was wrong with my liver but were not sure what. I had a week in the Royal and was then sent to the specialised liver unit in Birmingham Children's Hospital.

"Within a week of being in Birmingham I became very ill, very quickly."

Shortly after arriving in England - and two just weeks after first visiting her GP - Lucia was made a priority for transplant. Her case was so urgent that within hours an organ was made available and she went through her first surgery the day after she was put on the list.

She was in theatre for 10 hours and spent the next few days in intensive care, returning home to Northern Ireland five weeks later.

She says: "Even at this young age I remember my amazing doctors sitting down with me to explain what a transplant was and what would happen to me.

"I remember being amazed that someone else dying could save my life. After the recovery process, myself and my family wrote a letter to the donor family, to try to express our gratitude. Due to confidentiality reasons, we didn't actually know if they wanted to read it, but it's good to know that they could have it."

Unfortunately, the operation wasn't as successful as everyone hoped. Lucia's blood results did not return to the levels they needed to, she became vulnerable to infections, and spent most of the next year in and out of hospital.

It was the following October when it became apparent that she would need another transplant, and a full year to the day after her first operation she was again put on the list for a donor organ.

She says: "Again, I was very lucky, and only waited two months for my second liver. They say the second one is always a bit harder and the operation was longer, and again I spent five weeks in hospital. I settled well after it. This one lasted longer, six years and seven months to be exact. I was in and out of hospital quite a lot during that time but it didn't interfere too much with how I lived and it didn't stop me from doing things."

A keen swimmer, Lucia got involved in the British and World Transplant Games, competing in the long jump and badminton, too.

She also carried the Olympic torch and is grateful that the transplant allowed her to achieve so much.

She adds: "That liver took me to Spain, Florida and Sweden with the Transplant Games. It gave me the most wonderful experiences, and I met some really amazing people along the way."

Life seemed to be fine until January 2015 when, just after Lucia celebrated the sixth anniversary of her second transplant, she took very ill and had to be admitted to the intensive care unit at the Royal.

She had a serious kidney infection that turned to sepsis - a potentially life-threatening condition.

This put her liver under great stress and it never recovered. In May of that year she was relisted for her third transplant.

She explains: "I had quite a bad time and was very ill. There was a lot of stress on my body. After the kidney recovered the liver didn't, and I went to Birmingham in April to see if another transplant was the best option for me, and they decided it was."

She underwent her third transplant in September 2015. It was in the long months of illness as she waited on her donor organ, a time when she became so weak she had to use a wheelchair, that she had the idea for her campaign.

She says: "I thought that if I wasn't going to be at school or doing any other activities, I really needed something to do.

"So I just started writing my ideas down one day while in Birmingham Children's Hospital. I had paper Blu Tacked to my windows and wall where I would make notes and draw mind maps. This then turned into a campaign plan, and from there we got a group together to start the ball rolling.

"I started this campaign because I felt so strongly that more needed to be done about raising awareness of organ donation, that if I could help just a little, then it was worth it.

"However, I was beginning to get very ill. The first week in September I was brought over to Birmingham to be kept on eye on, as I was too sick to be at home.

"Before I left myself and my wonderful friends filmed the first video for the Facebook page, and the page went live in the following days. This coincided with National Transplant Week. Then on the Wednesday of that week, September 9, 2015, a donor was found for me - and I went down for surgery to receive my third transplant.

"The recovery process was tough but the news about the campaign always made me smile, and gave me a focus while trying to get my strength back. Since then the campaign has been going from strength-to-strength."

It is only now that her energy levels are coming back to normal and she has enjoyed her first healthy year with no hospital admissions since she was eight.

It has allowed her to get back to living a normal life, focusing on her studies and her campaign.

It is her aim through Live Loudly Donate Proudly to get organ donation included in the school curriculum, and she has the backing of teachers in her own school who have been supportive of her throughout her illness. With their help, a committee has been set up to realise her goal and work towards making it part of the education for all children.

She says: "I haven't been in hospital for the past 12 months, which is a record for me.

"I am feeling good and just focusing on my school work and the campaign.

"My big goal is to get organ donation on the curriculum so that young people can learn about it and have the knowledge they need to make a decision and have the talk with loved ones.

"Often when people have the knowledge they will see it as the sensible thing to do.

"The teachers in my school have been really supportive of me.

"They are eager to help and a group of them have got together to work towards my goal.

"I also want to raise awareness of organ donation and what it can do for everybody, not just recipients and recipients' families, but also donor families.

"I have spoken to some families and they explained that they found some comfort and peace in knowing their loved ones helped someone through their loss.

"A lot of people find it uncomfortable to talk about death or dying but you can make it a positive conversation, focusing on how you would be helping someone else.

"I hope the campaign will help many more people to have open conversations about organ donation.

"This whole subject is one of immense importance and can be one of the greatest gifts you could give to another person - life."

Case study: Paramedic Sean on the life-changing decision to give a sister one of his kidneys

A Co Tyrone paramedic who donated a kidney to his sister is encouraging others to make the lifesaving decision to become a living donor.

Father-of-four Sean Mullan (51) from Dungannon said he was asked about the possibility of becoming a donor in 2009 when he received a phone call from sister Hilary telling him that their sibling Eileen (45) was in renal failure.

“She asked me what blood type I was and if I would consider being a living donor for Eileen,” said Sean. “I knew very little about the living donor programme at that time. This was a big shock to me, and initially my reaction was to say no.

“I met with Eileen some time after and told her I wasn’t ready to be a donor. I guess my ignorance of the whole living donor programme helped lead to this difficult conversation.”

Sean remained unconvinced until brother-in-law John fell ill due to kidney failure and required medication and dialysis three times a week.

“I was aware of dialysis as I have worked nearly 23 years in the Ambulance Service,” he said. “During that time I took many patients to and from dialysis units.

“However, what I learned from John was how dialysis affects and restricts the life of the patient and their family. It is a life-limiting, but a necessary process while waiting for a kidney donation. I knew that a kidney would change John’s quality of life so much. My thoughts turned to my sister and her impending wait for dialysis or a kidney.” 

In January 2013, when Eileen’s kidney function further deteriorated, Sean decided to find out more about the living donor programme. “When I found out I was suitable and that I could continue to live life without any restrictions, I knew this was meant to happen,” he said. “With the support of the transplant team and from speaking to other friends and relatives who had been through the experience, we were both very well prepared.”

Speaking about the operation in July 2014, he said: “What a feeling to wake up and know that I had helped my sister and that within 48 hours her kidney function was normal! Very surreal and mind-blowing.”

He hopes to encourage more people to become donors. “I know that it is a difficult decision for families to make about deceased organ donation,” he said.

“However, I truly feel that we are a generous but cautious population and if we realise the true potential of being a living donor to the people we love and know, the demand for deceased donations would be eased.”

Belfast Telegraph


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