Still unsure whether to carry a donor card? Then read this young couple’s haunting story
The only thing that saved Luke Yates in the agonising weeks and months after his wife Sam’s death from cystic fibrosis was the knowledge that she would have wanted him to go on living.
When she died in his arms at the age of 28, his grief was so raw, so visceral that he thought he might lose his mind.
Luke, a biomedical research scientist at Imperial College London, says he was ‘haunted by terrifying flashbacks of the day she died, obsessed with the idea that I could have done more.
‘For the first time in my life, my brain, the thing I relied on for my rationality, failed me. I couldn’t keep Sammie alive. The only thing that could have saved her life was a lung transplant and that had to come from a complete stranger.’
Luke met Sam, a primary school teacher, when they were 16 and both volunteering at a children’s play scheme in hampshire. It was love at first sight for both. ‘When she smiled, her whole being lit up,’ he says. ‘And that smile embodied her zest for life and her lightness of touch.
‘She was my best friend, my soul mate, my everything. From the moment we met, we were inseparable. We both knew we wanted to be together for ever.’ They married aged 21 and settled in a picturesque cottage in Preston Candover, the hampshire village where Sam grew up.
Cystic fibrosis (CF) is a genetic condition that causes sticky mucus to build up in the lungs and digestive tract and Sam spent a good deal of her childhood in hospital fighting one infection after another. But with ‘handfuls of drugs’ and regular physio to dislodge the mucus, she’d managed to stay well throughout her four-year teacher training course.
No one knew how long she would live and she didn’t like talking about it. ‘She just wanted what everyone else wants,’ says Luke. ‘She wanted to be loved, to be married, to set up a home, to have a career. She had always wanted to be a teacher and really strove to achieve her dreams.’
In the back of his mind, he knew they’d face huge challenges, but didn’t want fear to dominate their lives. ‘Sam had already lost friends to CF but I was always hopeful that together, we’d be able to conquer whatever came our way,’ he says.
Sam and Luke’s story has been captured in a remarkable, heartbreaking film, A Love Worth Giving, which Luke hopes will encourage people to sign up to the organ donor register.
As Good health has highlighted, there’s a desperate shortage of donor organs — around 6,500 people in Britain are on the transplant waiting list and three a day will die before an organ becomes available.
SAM was on the list for three years and three months. ‘She waited and waited,’ says Luke. ‘She was so brave. She never complained and she never gave up hope. But in the end she just ran out of time.’
After graduating in 2008, Sam suffered her first serious chest infection in almost ten years during her first primary school placement.
Over the next year she suffered recurrent chest infections, which left her tired and exhausted and having to take time off work.
‘It was terrifying watching her health plummet,’ says Luke. ‘ She always recovered, but the following year she was admitted to the Royal Brompton hospital, in London, where she’d been cared for as a child. The conversations with doctors suddenly became more serious.’
She was admitted to hospital once a year over the next three years, but with typical good humour, Sam referred to these episodes as ‘blips’.
Then her lung capacity dropped to around 30 per cent — a point where she was struggling to breathe without a portable ventilator, and for the first time her doctors started to talk about transplants.
‘That was when the gravity of her situation really dawned on me,’ says Luke. ‘It was shattering for Sam because it meant acknowledging how frail she’d become and she cried for days. But at the same time, she knew she had no other options left.’ Sam went on the transplant list in January 2010 and the waiting began.
She retired, in her own words, ‘kicking and screaming’ from the job she loved, vowing she’d go back to it as soon as she was well.
But as her condition worsened, her life telescoped. ‘She tried to go out as much as possible in her wheelchair with me, even if it was just to the shops,’ says Luke. ‘ But her capacity to do things decreased and just getting dressed was a huge effort. She was on morphine for her chronic chest pain.’
By the summer Sam’s lung function was down to 18 per cent and she was tethered to an oxygen machine day and night.
Luke remembers lying in bed, listening to Sam’s lungs, full of sticky mucus and scar tissue, ‘creak and crackle’ as she desperately tried to draw breath. every day, he’d get up at 4am to commute to Oxford where he was working on a PhD in clinical medicine, looking at cell division, important research connected to the discovery of new cancer drugs.
In the evening he cooked and cleaned, did Sam’s physio and administered intravenous antibiotics, rarely getting to bed before midnight. he was exhausted. ‘But we kept our hopes up, we never talked about what might happen next.’
They lived on a small research grant, just enough to get by. ‘Sure we were poor, by most standards,’ says Luke. ‘But we never considered ourselves poor. We had each other and that’s all that mattered.’
In January 2013, Sam was again admitted to the Royal Brompton. This time, she never left. She was given intravenous antibiotics, morphine and powerful antisickness medications, but the infection did not yield.
Despite all this, on good days, like any young couple in love, Luke and Sam managed to find lightness and fun. Once he smuggled her beloved cat, Oscar, into the hospital.
And they planned ‘mini escapes’. Loading her wheelchair with an oxygen cylinder and her morphine pump, they’d set off down the King’s Road for ice cream.
‘One day, Sam said: “I’ve never had a Bloody mary!”, so off we went to the pub next door,’ says Luke. ‘Sammie never moaned. The only time I saw her cry was when she was told in march 2014 she’d fractured a rib coughing and would have to be taken off the transplant list.’
As Sam became increasingly breathless, Luke’s voice was her voice. ‘Because I knew her so well, I’d say: “This is how she feels. This is what she wants.” But we were dealing with an infection that could no longer be controlled.’
Sam spent many days unconscious, while Luke slept on the floor by her bed. ‘The clichés are absolutely true in these circumstances,’ he says, ‘my world literally stopped and I didn’t know what to do with myself. It was the first time I hadn’t been able to make her feel better.’
Then on Sam’s 28th birthday, February 23, after being unconscious for three days, she woke up. Luke bought a cake and some fizz.
he hung banners and balloons and bunting all round her hospital room and they celebrated with Sam’s parents Ros and Alan. For a while, Luke thought she’d turned a corner. ‘ But looking back, it was like a little spike of life before she passed away,’ he says.
On April 4, 2013 he woke to find Sam’s skin cold. he put his fleece over her to try to warm her up but he knew the end was near.
She was unconscious, but still breathing. ‘I could see she was clinging on for no reason, probably for me, so I had to tell her it was OK to go. And then she died.’
he falters. ‘I never talk about this, I don’t even allow myself to think about it because the pain, when I go back to that day in my mind, is obliterating. holding her in her final moments profoundly changed me.’
his grief was ‘unquenchable and unremitting’, a physical pain he could not bear. ‘ Our life together was incredibly special and incredibly intimate and I just couldn’t see a future without her,’ he says. he remembers little of the days and weeks after she died.
Consumed with guilt, he spiralled into depression. ‘I couldn’t think properly. I wasn’t eating or sleeping, my mind was filled with her last moments.
‘I was running to the bathroom to vomit five times a day. It sounds melodramatic, but my anxiety and depression and grief was like a beast I couldn’t control. It overrode every sensible, rational thought.’
A year after Sam died, Luke was diagnosed with post-traumatic stress disorder. ‘The hardest thing I’ve had to come to terms with is the fact I was utterly powerless to stop the freight train that was her illness bearing down on us,’ he says.
‘She’d recovered so many times before, I thought I could, too. I always put Sam’s needs before my own but I had to accept that I did everything in my power to look after her and keep her alive, but only a transplant would have saved her.
‘If she’d got one, she’d probably be sitting here today.’
Sam had campaigned for people to join the organ donor register and Luke was determined to carry on that work. ‘Sam felt that if she was going to be an organ recipient, she should be a donor, too,’ he says. AFTER she died, Luke donated her corneas, the only tissue she could donate. And he has become a trustee for the charity Live Life Give Life which campaigns for more donors. ‘I want her death to have had significance.
‘And I want to make sure people like me won’t exist in the future, suffering the agonising grief of losing loved ones for want of donor organs. If more people signed the register, more lives could be saved.’
Last year, Luke left the hampshire cottage they’d shared for five years. ‘I tried really hard to stay because Sam loved it, but it was just too painful,’ he says. he now shares a house in London with friends, ploughing himself into his scientific work, painting landscapes in his spare time.
his doctorate, dedicated to Sam, won a graduate research prize, awarded to top students by the Nuffield Department of medicine at Oxford University for exceptional ability and commitment to science.
‘Sam was my foundation, my springboard, she helped me find my way in every sense,’ he says.
Three years on, he can at last see a way forward,
‘I feel incredibly fortunate that we found each other and for a short time at least, we knew perfect contentment. The world was such a wonderful place with Sam in it.’