Just after he was born, Jim Lynskey contracted viral meningitis, which led to the enlargement and weakening of his heart. At the age of eight, Jim suffered consecutive cardiac arrests and his condition worsened again at 17. He was placed on the transplant list at 19 but four years later, now 23, he is still waiting for a new heart.
“I am living with something called a Left Ventricular Assist Device (LVAD),” he explains. “That’s basically a heart pump that pushes blood around my body because my heart is failing to quite an extraordinary degree.
“I have no pulse. This pump sends a constant flow of blood around my body rather than an organic human pulse. It can be quite bizarre sometimes when people are trying to feel for your pulse and it’s not there.”
The equipment’s battery pack has an eight-hour lifespan and Lynskey has to plug himself into the mains at night while the batteries recharge.
“I’ve been on and off the transplant list for four years now,” he says. “I’ve had a couple of open-heart surgeries so there’s been times when I’ve had to come off the list to recover. One day I will need a heart but people are being fitted with technology similar to myself because there are so few donor hearts.
“I am really grateful for this heart pump, which is keeping me alive essentially, but there is a burning frustration amongst many patients that we can’t have a human heart that brings so much more quality to your life.”
Despite his perilous condition, Lynskey isn’t considered to be a priority case, simply because there are others even more unwell. The waiting list he is on is not one you gradually move up. Around 300 people are waiting on a heart transplant and most are in Lynskey’s position where realistically they will only be considered for a heart transplant if their condition severely deteriorates. It’s a bizarre scenario when you know that although you are very sick you have to become much sicker before having a hope of getting better.
“The waiting list system has been altered recently,” he explains. “The NHS used to have an urgent list and a non-urgent list but as of the last few months they’ve had to alter it because there are so few donors. Now there are five or six people on the super-urgent list – literally the first organ through the door is offered to the person waiting in hospital – and then there is the urgent list with about 10 people. And then there’s the non-urgent list, which is where I and many other people are situated.
“It can be months or years on the non-urgent list at the moment, but I’ve known a patient to be on the urgent list for seven months, sat in hospital, being kept alive by external pumps and other apparatus. It speaks volumes that on an urgent waiting list, it’s a seven-month wait at times. It’s just shocking.
“The fact it has to operate in that way reiterates the fact that there are so few donors. We can’t all have an equal chance of getting a donor, you have to be listed in different leagues.”
Lynskey’s condition affects all aspects of his life, but that doesn’t stop him living his to the full. He is currently in his final year at Sheffield Hallam University studying Food Marketing. “It’s a bit different, all about the grocer retail industry and how the likes of Aldi and Lidl have risen to such heights.”
He juggles his degree with campaign work. Recognising that he was just one of hundreds in need of a transplant, Lynskey decided to set up his own organisation, Save9Lives, to raise awareness.
“I guess it originated from my hospital bed,” he says. “During my research I first came across the fact that one donor can save nine lives. It stayed with me and I eventually I turned it into this campaign.
“They generally try and match a donor of a similar age but there’s a chronic shortage of younger donors, understandably because older people generally die more than younger people. But it happens quite frequently that younger people will be fitted with an older person’s organ.
“A heart is what I’m searching for at the moment, the cut-off age [for donors] is 65. There was a young teenager I was in hospital with recently and she was fitted with a 60+ year old’s heart, which speaks volumes of the chronic shortage of younger donors.
“There are cases, unfortunately, where young people die and their organs aren’t received because the conversation hasn’t been had and families don’t know what to do.”
The message Lynskey is trying to get out there is that people should talk with their loved ones so they know what their wishes are.
“Talk about the subject. A lot of people will have, given that opt-out both in Scotland and in England is pending. It’s more vital than ever to talk about your wishes with your loved ones. Families can override consent of organ donation if that conversation hasn’t been had.
“The most important thing, as well as signing up, is talking about it among families and friends just to make it clear that what you want to do is made known.”
Find out more about Jim’s charity save9lives.com