“You Don’t Realise How Much You Want To Live Until You Almost Can’t”

Ellie Lacey recalls the moment she was woken up to be told a donor had been found for her. It was 11pm on Friday 13th January 2017 and she was lying in intensive care after an unexpected and rapid liver failure. She had been given 48 hours to live. "I burst into tears. I just remember gripping my transplant coordinator’s hand so tight. You don’t realise how much you want to live until you almost can’t."

The busy hospitals, blood tests, worried doctors and talk of an organ transplant were a far cry from the active life Ellie was used to. Only 10 weeks earlier, the fit and healthy 30-year-old had been in the midst of organising a marathon in Uganda, having just cycled 6,000km across Europe with her partner. They’d stopped off in Slovenia to tie the knot, tanned, glowing and full of laughter. These memories felt like a lifetime ago for Ellie while she lay there, unable to get out of bed and struggling to recognise even her husband.

At first, the tiredness and the swelling she’d been experiencing over recent weeks was more annoying than anything else, explains Ellie. "But everything got very real and I deteriorated quickly." Within days of being rushed from Cardiff to the Royal Free Hospital in London, she’d been placed at the top of the super urgent liver transplant list. "All I really remember is this overwhelming guilt," describes Ellie of the moment doctors gathered around to tell her the news. "Suddenly I needed somebody else to die so that I could live and that is all I could think at that time."

There are currently more than 6,000 people waiting for a transplant in the UK, and in May this year England will follow in the footsteps of Wales and introduce an opt-out system. What does that mean exactly? Well, according to the NHS, the law change will consider all adults in England to have agreed to become an organ donor when they die, unless they have recorded a decision to opt out. 

However, the reality of organ donation means families will always have the last say, unless the patient has nominated a representative. Those who’ve experienced the NHS organ transplant service firsthand, be it as a recipient, family of a donor or as a transplant coordinator, say that now more than ever it’s important to start the discussion and attempt to normalise the conversation around donation.

"I think we’re a bit scared of talking about death, and because of that, we then don’t talk about donation," says Natalie Ashley, a specialist requester for the NHS organ donation team with more than two decades of nursing under her belt. Her role – to support families through the process of organ donation – means that she is often the person to start the conversation with the loved ones of a patient who is coming to the end of their life.

Behind the scenes it’s a logistical puzzle, with a series of complex and rigorous protocols that have to be expertly navigated, involving long hours of work from a diverse team, including nurses, doctors, surgeons, specialist transplant coordinators, coroners, drivers and even pilots. Numerous tests have to be performed for safety and a match sought for each organ. No organ is removed without a named recipient already in place. 

"It’s all managed very, very carefully. Every step of it," explains Natalie. "It’s like a massive jigsaw really and there’s so many bits that have to be put together exactly for the whole process to work."

"I don’t think it’ll affect my role a huge amount," she says of the upcoming law change. "Although the law is encouraging people to either opt in or opt out, at the end of the day, for all those patients, we will still meet the families and they will make that decision." What she believes is crucial, though, is friends and families openly discussing organ donation and normalising the conversation.

"For families that have had those conversations, it makes our jobs so much easier [and] it makes their decision so much easier to make. I’ve seen families absolutely agonising because they genuinely don’t know what to say." She hopes the promotion and coverage of the law change will raise awareness and get people sharing their thoughts on it.

According to figures from NHS Blood and Transplant, even though eight of 10 people in England say they would definitely donate or would consider it, only a third have actually told their family they want to donate. The importance of discussion is underlined by this startling statistic quoted in Amelia Gentleman’s insightful piece on organ donation for The Guardian: "Seven out of 10 families opt not to give permission for their relative's organs to be donated, if they don't know their wishes."

"Every donor where the families give permission is so precious because there are so few people that can actually go on to be a donor," explains Natalie. Even if you’ve signed the register, organ donation will only be a viable option for a small percentage of people. To become a donor, a patient needs to be in an intensive care setting on a ventilator and there has to be a plan to withdraw the ventilator.

Simply put, organs need oxygen otherwise they will deteriorate quickly. If a patient dies on a ward, however, there is still the possibility for them to donate tissue, such as corneas, bone and tendons.  

Natalie’s role spans far and wide and one of the many conversations she’ll have is with religious leaders. "We meet people from all sorts of religions [and] cultural backgrounds so a lot of our role is supporting people from different ethnic minorities and sometimes working with their religious leaders," she says. "There aren’t actually any religions that say organ donation cannot happen. There’s different interpretations of religious beliefs, so sometimes it’s just talking to them and involving their religious leaders."

Trevor Hurt, whose daughter Rosalind collapsed suddenly following a pulmonary embolism at the age of 24, knows just how vital it is to be aware of a person’s wishes. Having signed up to the organ donor register when she was 16, Trevor’s lively and opinionated daughter had made her thoughts on the topic clear: "We were all in no doubt whatsoever that that was what she would have done. She wouldn’t have seen any sense at all in being buried or cremated with all her organs."

Rosalind donated her kidneys, liver, heart and corneas, saving or improving the lives of five people, while her retinas were donated to lifesaving medical research. A little while after her death, the family received a heartfelt letter from the 60-year-old man who had received one of her kidneys. He described the huge difference it had made to his life and that of his family. In his reply, Trevor wrote that although Rosalind’s death at such a young age had been "almost impossible to bear", knowing she had been able to make a difference to the lives of others had played a big part in helping them to come to terms with the tragedy.

He hopes the law change will boost donor numbers but voices concern that it may unintentionally carry the implication that it is no longer necessary to do anything to donate your organs. 

"The most important thing that any of us can do is to make sure that our wishes are clearly known to those who would be faced with the final decision," he explains, pointing out that the easiest time to have this conversation is when it’s still a purely hypothetical situation, rather than leaving it to distressed family members to make the decision when they are under immense pressure.

"It’s especially important with young people [to have those conversations] as well of course," stresses Trevor, "because firstly, they don’t expect to die suddenly and secondly, if someone that age does die then clearly the organs are going to have a greater lifespan, if you like, for the recipients." He is passionate about educating people about organ donation and since Rosalind’s untimely death, her friends and family have thrown themselves into raising money for Live Life: Give Life, a charity that promotes education on the topic. 

Ellie, who has since competed at the World Transplant Games, also has mixed feelings about the law change and says she thinks it will only work if people still make an effort to talk about organ donation and share their thoughts on it with their loved ones. "Most of the people that become eligible for organ donation die in quite an unexpected and tragic way. The family are not in a good head place to take this decision away, mull it over for an hour and give you a decision that they would still feel the same about in six months' time."  

While generally people have become more receptive to the idea of organ donation over the years, says Natalie, a range of misconceptions, assumptions and myths still crop up. A common worry about which she often has to reassure people is the surgical procedure to remove organs. Both Natalie and Trevor explain that the greatest care is taken by the surgeons, who treat the procedure as they would any surgical procedure on a living patient. 

Eyes are another area which people can be squeamish about, while some believe they are needed in the afterlife. One in 10 people on the NHS Organ Donor Register have recorded that they do not wish to donate their corneas. There are a few misconceptions when it comes to donating corneas, namely that the whole eye is transplanted (it is just the very thin, clear outer layer at the front of the eye) and even if your vision isn’t 20/20, you can still donate. 

Another person who knows about the need to inform and educate is Jess Harris, who received a kidney and pancreas transplant in 2018 after diabetes left her with rapidly decreasing kidney function. She recalls leaving her 30th birthday party to go home and carry out dialysis on her own. She tells me she was "lucky" that her kidneys declined so rapidly; she could only be activated on the transplant list when she recorded three consistent kidney function levels of below 20%. "To hover there for months or years is just shocking because you’ve got no [energy] to do anything," she explains. 

Jess recalls the excitement she felt as she hurriedly packed a bag for the hospital – forgetting in the rush of emotion that she’d had her bags packed and ready to go for months. Her exhilaration then turned to sadness and guilt. "In the car suddenly it hit me: Okay, I’m going for this but it means that someone else has just got awful news that they’ve lost their family member." 

Her donor was a 50-year-old male, which Jess admits caused her great concern at first. She tearfully told her parents that she couldn’t go ahead with it as the organs were 20 years older than her. But the surgeon stepped in with reassurances, telling her: "You’re so ill right now and if you’re waiting for someone’s kidney that is going to be your age or near your age, you’ll be waiting such a long time. We wouldn’t do it if we weren’t sure."

She recounts the numerous misconceptions and assumptions about organ donation she’s come across, some of which have been aired in recent discussions about the law change. "This guy said to me, 'I'm so against the new law. I don’t want the government in charge of my organs'," she says, describing a conversation at a house party she’d been to recently. "That’s what I can’t bear: the ignorance. I’d always rather talk about it and educate someone." 

Ignorance about organ donation has even infiltrated her dating life, namely a guy she’d met on a dating app and had planned to meet for a drink. "I’ve done a lot of campaigns [on organ donation] and this guy screenshot it and was like 'Is this you?' and I said yeah, but I’d rather speak about it in person. He completely blocked me," she says, recalling her disbelief. "He clearly wasn’t worth the drink anyway but I want to know what he’s learned, or mislearned, for him to come to such a strong conclusion that I’m not worth talking to."

She thinks education is key and would like to see organ donation being acknowledged and spoken about in schools. "The biggest thing that I’ve realised is that it doesn’t just affect the individual who receives the organs," she explains. "It’s so much wider than that. If someone loses a family member, their family is never the same again. So you’re not just saving one life, you’re saving a generation, a whole family’s future, a friendship group." 

I ask Ellie, who has recently started her own podcast, Transplant Talk, about the myth that doctors will not try as hard to save your life if you’re on the organ donor register or don’t opt out. She sighs. "Yeah, I’ve heard that one." She continues: "Whenever people say that to me, I say that I was lying in that hospital bed and it would have been so easy for them to let me die. Honestly, I’ve never known a team of people work harder."

Both Jess and Ellie speak of a mix of emotions that can be hard to cope with, plus a strong sense of guilt. Milestones are especially difficult for Jess and she explains how the support of others has helped. "I went through a time when I [felt] guilty and I’ve spoken to a few people [who’ve said], 'He didn’t die for you, but in his unfortunate circumstances he saved you'." 

Ellie says she can put herself under enormous pressure to live a 'full life' following her transplant. "There’s always this feeling like I should be doing so much with my life because I owe it to somebody else." After months of elation following the transplant, she confesses she dipped into periods of feeling deeply depressed. "I felt like I couldn’t share that with anybody because I thought that was so ungrateful." 

Laura Beattie, 31, from Manchester, who is currently awaiting a double lung transplant due to cystic fibrosis, hopes that with the new law change more people will decide to stay on the register but, again, stresses the importance of encouraging discussion.

"I do respect other people’s decisions wholeheartedly. At the end of the day it is a choice but starting the conversation about organ donation really gets it going, and even if you don’t agree with it, I think even just the initial conversation can help you think differently about it as well."

With her lungs functioning at around 22%, Laura is often on oxygen and describes how she needs it for simple acts like getting changed and drying her hair. Even walking down the hallway can leave her breathless. It’s clear that a transplant would be life-changing. 

She enthusiastically tells me of her future aims for the sustainable luxury fashion business, Careaux, which she set up with her sister. "How I am at the moment hasn’t stopped us from doing it at all, but I just think [a transplant will] really help. I’ll be able to walk, I’ll be able to go to more places, I’ll be able to just breathe and not be exhausted." 

She sums up her thoughts on donation poignantly. "Even though it’s such a sad time, it’s such a selfless act as well, to want to be an organ donor."