Watch: Living with an artificial heart
Lucy Trevallion interviewed Jim Lynskey in 2016 while he was waiting for a heart transplant. Sadly, Jim passed away on the 13th May 2019. We share this interview with him in tribute to his fighting spirit and to highlight the important work he did raising awareness of the shortage of organ donors.
Jim Lynskey is the youngest person in the UK with an LVAD, a mechanical heart pump that keeps him alive. He tells Lucy Trevallion how it impacts his life.
Jim Lynskey’s life is not that of a typical 21-year-old. Every evening he plugs himself into the mains: wires protrude from a hole in his stomach and connect to a pump in his heart. He carries two large battery packs, a computer and spare equipment at all times. Jim is fitted with a left ventricular assist device which keeps his failing heart going while he waits for a heart transplant. Meanwhile, he’s at university, enjoys drumming and has even created a campaign encouraging others to make life-changing organ donations.
Life in limbo
Jim, from Worcestershire, is thought to be the youngest of around 100 people in the UK to be fitted with an LVAD. It can make life difficult. “It’s a bit annoying that you’re literally attached to the wall,” Jim says. “It’s hard to sleep at night, because of the humming noise of the device, and part of it can get really hot.”
Even going for a quiet family meal can become an ordeal. “I was in a peaceful restaurant and it started to beep a lot,” says Jim. “I got the device out on the table and was wiggling the wires around, in panic mode. Everyone was like: ‘What on earth is going on here?’ I feel like I have a hidden abnormality, which is quite embarrassing.
I don’t think I’ll be able to live in the real world until I get a heart
Jim doesn’t go out very much at the moment and feels he is in limbo, waiting for a heart transplant. “I don’t think I’ll be able to live in the real world until I get a heart. I can’t do a 9–5 job or deal with stress, as, for me, it could provoke ventricular tachycardia [VT – a potentially dangerous heart rhythm].”
Jim’s had the LVAD for two years. Over time, scar tissue can gradually build up, embedding it more firmly and meaning it can be more difficult to perform a heart transplant. Jim was told that after three years the LVAD is particularly difficult to remove. He feels like time is running out.
David Moule, Transplant Recipient Co-ordinator at Papworth Hospital, explains: “It is true that the scar tissue, or adhesions, that develop after LVAD implant make the device removal and heart transplantation a more complicated operation, though it is frequently performed by highly skilled transplant surgeons.”
Jim always carries spare equipment, including two large battery packs.
Soon after birth, Jim and his twin sister Grace both caught viral meningitis. While she recovered quite quickly, Jim became seriously ill. His family were told that his life expectancy might be limited, and there was a risk of a loss of speech and brain damage.
But it emerged that the problem was with Jim’s heart, not his brain. His heart had become enlarged and ‘baggy’, meaning it couldn’t pump blood properly – a condition called dilated cardiomyopathy.
Many people with this condition are able to live a relatively normal life. But in Jim’s case there were severe consequences, though they weren’t obvious straight away. All seemed well until the age of eight. One hot summer’s day, Jim went into VT. He had to be resuscitated from two cardiac arrests.
It stuck out like a brick in my chest. It was really hard to live with at that age.
“I did feel like I was going to die,” Jim says. He was airlifted to hospital, where he had an ablation to correct the electrical problem in his heart, and received an implantable cardioverter defibrillator (ICD). “Because I was so small, it stuck out like a brick in my chest,” he says. “It was really hard to live with at that age.”
He says that when he went back to school: “Everyone was terrified of me and what might happen.” But with the help of his parents and his sister he excelled, and later loved sixth form, where he made lots of friends.
Nine years after his cardiac arrests, Jim was at football training when he went into VT again, despite his ICD. But after seven hours of VT, and another cardiac arrest, doctors managed to resuscitate him, with the help of an external defibrillator. He was allowed back home but Jim (now only seven stone) could barely eat Christmas dinner.
A month later, he was fitted with the LVAD.
Jim feels lucky and grateful to be alive. He still loves watching football, and is studying for a degree in food and consumer management. He has also set up a campaign to encourage organ donation, called Save9Lives, based on the fact that each person who signs up could potentially save nine people’s lives. Ninety-three people have already signed up via his campaign, which could mean up to 837 lives saved.
“Every time I have a really bad, dark day, I just think: ‘I want to do something about this’,” says Jim. “So I’ll email someone, phone someone, try and make something good happen for the campaign.”
Jim has coped with more than most people his age, but is still working to help others. “I didn’t want the campaign to just be about me, I wanted it to be about saving lives,” he says. “This isn’t me getting the violins out, this is me saying: ‘Organ donation affects people, I’m going to talk about it.’
“The whole Save9Lives campaign has a big impact on my positivity. It’s amazing for me to see the amount of money that I’ve raised, the donations I’ve had. I’ve got my fingers crossed that the best is still to come. What will 2017 hold? I’m hoping for a transplant.”
The need for organ donation
In the UK, around three people die each day in need of an organ. Only 34 per cent of the UK population are registered for organ donation, according to the latest figures from 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.