Jim Lynskey is the youngest person to receive an artifical heart, now he has launched a campaign for more organ donors. Grace Hammond reports.
Jim Lynskey is not your average 21-year-old student.
While some of his friends are partying into the small hours, Jim spends his evenings plugged into the mains as he recharges his mechanical heart.
Two years ago, Jim, a second year food marketing student at Sheffield Hallam University, was fitted with an electrical device to keep him alive after suffering a cardiac arrest.
The device has an eight-hour battery life and without the nightly power boost he wouldn’t be here.
But Jim doesn’t like to dwell on that.
Instead, he is campaigning to raise awareness of organ donation in the hope that he and the 6,500 other people on the transplant list will one day get the chance of a normal, healthy life.
Jim’s heart problems began after he and his twin sister were struck down by meningitis when they were just one-week old.
While his sister recovered quickly, Jim was left with a serious condition known as dilated cardiomyopathy - an enlarged heart.
As a child the condition seemed to be manageable until he suffered a cardiac arrest aged just eight-years-old. He was fitted with a defibrillator and continued to lead a relatively normal life until the age of 17 when he suffered a second cardiac arrest while playing football.
Doctors managed to resuscitate Jim but he was left seriously ill and weighed just seven stone. A month later he underwent an eight-hour operation to be fitted with a left ventricular assist device (LVAD) - a mechanical heart pump that keeps him alive.
Jim is thought to be the youngest of only 100 people in the UK fitted with the device.
But it is life-limiting and not a long-term solution; and what Jim desperately needs is a new heart.
“This was an incredibly difficult period in my life,” recalls Jim. “The pain when I suffered the cardiac arrest was indescribable and afterwards I became quite depressed.
“The device is hard to live with; it’s difficult to sleep through the noise and is so restrictive. I also received the news that I had a really low chance of getting a heart transplant.”
Jim’s condition has had an impact on his family, mum Colette, dad Gerry and siblings Grace and Joe. Collette finds it difficult to watch her son struggling, and wishes she could take his place.
“This part of my life can’t be put into words,” she says. “The extreme worry, the sleepless nights, the sick feeling – it’s in your every waking hour.
“I remain optimistic; I have to. I dream of a day when Jim has a successful transplant and he can travel and have fun, be ‘normal’, get a job, a girlfriend, maybe even have kids... the simple things we all take for granted. Just to have a life!”
Jim tries to stay positive.
“I needed something to focus on and decided to start the campaign,” he expalins.
While in hospital recovering from surgery, Jim got the idea for a quirky social media campaign to encourage people to sign up to the organ donor register.
Save9Lives, which has just reached its first anniversary, highlights that each person who signs up to the organ donor register has the potential to save nine lives. Ninety-six people have signed up so far through the campaign - which potentially means 864 lives could be saved.
“It doesn’t sound a lot when you see the individual figure but when you multiply it by the number of lives one person could save it reminds me why I’m doing this,” says Jim.
His charity events have got his campaign noticed by high-profile celebrities who have endorsed the campaign on social media, including former England footballer Alan Shearer, former Downing Street spin-doctor Alistair Campbell and singer Frank Turner.
Jim has also become close friends with the band Little Comets who visited him at home after his second cardiac arrest meant he was unable to attend one of their gigs.
Jim and the band’s three members hit it off and last year the band helped to publicise the campaign by playing a gig while running the Great North Run - raising £4,000 in the process. The trio sang and played their way round the 13.1 mile route to raise awareness of the need for more organ donors.
“The objective of the campaign is to be a bit different and mix bizarre, crazy events with this important message,” says Jim.
“Raising money is fantastic but it’s more important to me to raise awareness and get people to sign up.
“It’s still quite a difficult subject for people to talk about, which is understandable but I want to break down those barriers and start a conversation about organ donation among families around a dinner table.
“I want to contrast such a dark subject with fun, bright events - even down to the campaign’s logo.”
Jim manages the campaign in his spare time while completing his food marketing degree.
He is currenlty filming a number of documentaries about organ donation and his campaign, including one for the BBC.
“It’s quite challenging to balance the time and work. The staff at Hallam have been really supportive and are always accessible when I need them.”
There are currently 6,500 people waiting for a transplant, and Jim says his campaign is for every one of them.
Jim lives in hope that he will one day get the call that a donor heart is available but until that day he will keep doing what he does best - using his plight to help others.
Approximately 100 people in the UK currently living with an LVA
The LVAD battery lasts for an average of 4-6
In the UK, around three people die each day in need of an organ.
There are currently 6,500 people waiting for an organ
Only 34 per cent of the UK population are registered for organ donation, according to NHS Blood and Transplant.
You can see Jim’s campaign at twitter.com/save9lives. Find the donation link via Twitter or visit organdonation.nhs.uk.
For more information and support on living with a heart condition, sign up to the British Heart Foundation’s free Heart Matters magazine at bhf.org.uk/heartmatters