Jen, thirty-four years old
Cause of death: Heart failure
Cause of life: Vitam vive, live life
I met Jen’s heart six weeks before I met the rest of her body. It was suspended inside a glass container in a museum in London. Jen is the only patient in this book whose heart never did restart after it stopped. Instead, she needed to be gifted someone else’s heart to live life.
I met the rest of Jen on a sunny winter’s day. She looked the picture of health – a white smile, warm cheeks, soft curls sitting on shoulders covered by a cosy blue jumper. The sun streamed through the large panel windows of her house overlooking the sea on England’s rugged south coast.
‘Where to start, where to begin,’ Jen said. ‘It’s been an interesting life.’
‘Interesting’ is one word, but closer to reality would be ‘tough’. Jen can’t remember a time before her mum was sick. And with her botanist dad exploring the world for the Natural History Museum, her childhood was spent on a tightrope. And then her mum died. Jen was just thirteen. Her world and everything around her turned to rubble. And that was before Jen found out that she had the same heart condition as her mum. And before Jen was told she needed a transplant, the operation that had killed her mum.
Jen’s mum first knew something was wrong after fainting on the school bus. Years passed filled with frequent visits to the hospital but by her mid-twenties little more could be done to treat her heart failure. After marrying while still studying at Cambridge University, Jen’s parents struggled to have a family despite her mum being told that having children could kill her. Jen was born three months premature at the edge of survival. By the time Jen was ten, her mum couldn’t leave the house. Family walks to the pub for a Sunday roast morphed into Jen having frequent sleepovers with friends as her mum spent more time in hospital than at home.
Days after turning thirteen, there was an important phone call. Jen knew it was significant because her absent dad was at home after cancelling a long-planned trip to the Mayan ruins. Hushed voices spoke, bags were packed, tablets were gathered into a bag. Jen was told to hug her mum and then they left for the hospital.
‘It felt different. I knew something bad was happening, but no one told me what.’
Three days later, when Jen and her brother got home from school, her dad and grandmother were waiting at home, clutching cold cups of tea.
‘Mum is dead.’
Jen’s mum Sally had died on the operating table during a heart transplant. It was a last-ditch attempt to cure very advanced heart failure that we now know was caused by a rare inherited disease; a genetic condition affecting only the female side of the family.
Sally had been a fearless woman. She loved life, wouldn’t be told what to do and always put her family first. She had waited until she needed oxygen and a wheelchair before agreeing to a transplant. She knew how high the risks were and knew what it may mean for her two children.
Despite Sally’s love, life also stopped for her children after her sudden death. No more ballet. No more horse riding. No visiting other family members or even talking about mum. Jen went back to school the Monday after Friday’s funeral. And school was tough. Although taught by nuns who were very familiar with the pain of loss, no one asked Jen about her mum. No one said Sally’s name. Old friends avoided Jen because they didn’t know what to say. And so, they said nothing. It was like Jen’s mum had died a second time. Her dad resumed his travel, the house emptied, her grandmother did her best. After six months, the headmistress called Jen into her office.
‘Are you all right?’ she said.
‘Yes…’ said Jen, fearing she might be taken away from her remaining family if she told the truth.
‘Very well.’
When your parents die, they move in with you. That was it. Jen didn’t just lose her mum. She lost everything else too.
I have two wonderful daughters. Evie is the eldest – hard-working, studious, moody and slams her door. She loves reading and history and getting good grades. Dad is always embarrassing, and the very suggestion of a solution or idea means that it is the wrong suggestion or idea. And then there’s Mimi – three years younger, red-haired and crazy. As a toddler, she would often lose her shit over something seemingly as inconsequential as not being allowed to eat her breakfast cereal with an ice cream scoop. She hasn’t changed. And so, when Mimi made friends with a new girl at school called Catrin, who also had red hair, we knew we were in trouble.
We quickly realised that our small village lives had already crossed with Catrin’s family. I had trained at the gym with Catrin’s mum, and my wife went to exercise classes with her dad. We had many mutual friends and our lives had criss-crossed without meeting. We also remembered that Catrin’s mum Charlotte had died from a brain tumour when Catrin was just ten.
Even though my days working in the Intensive Care Unit are spent walking hand in hand with death, we fell into the same trap as Jen’s friend when Catrin first came to our house. We avoided topics that included ‘mums’ and at Christmas or on birthdays we steered towards the fun and away from the loss. But Catrin knew better. She was braver than us. When baking, she would say ‘Mum used to love making these’ or ‘my mum had red hair too, we called her a lion’. And so we took her lead and leaned into it. We started asking to see photos of her mum and talking about her on Mother’s Day. We lit a candle for Charlotte at a church service to remember people who had died. We allowed her to be remembered for what she was, ‘an inspirational and unfalteringly brave woman, kind and selfless with an eternal smile’, as described by her husband Dafydd and eldest daughter Freya. But it wasn’t all doom and gloom either. Eulogies that are written about people often exclude the awkward bits, the quirks or the cracks. But we must remember that, as Leonard Cohen said, ‘cracks let the light in’. So when our family went to a fundraising gym workout to support Brain Tumour Research, friends reminisced how Charlotte’s funeral was as much a celebration of the cracks as well as the light that made her an incredible woman, with as many laughs as there were tears.
It has been said that you die twice – once when your body dies, and the next when people stop saying your name. During that charity event, more than a hundred people worked through punishing exercises in pairs while Charlotte’s favourite music played. Dafydd cooked with Freya, while Catrin and my daughter Mimi paired up. And this was all in the name of Charlotte – literally – as each new exercise in sequence spelled out her name in bold letters for everyone to remember. Charlotte will only die once thanks to those who did, and always will, love her and keep saying her name.
As if school wasn’t hard enough for Jen, her own symptoms then started. Although she was sporty, enjoying hockey, tennis and squash, cross-country runs became impossible for Jen. She just couldn’t run the distance. After being shouted at by her PE teacher for stopping during one lesson, Jen noticed the hill on the way home from school felt steeper. From fourteen, Jen would stop to tie her shoes halfway up rather than tell her friends that she felt out of breath.
But at least when Jen got home, there was always a welcome. Not a human welcome, but from her animal friends that filled the house – geckos, toads, rats and her elderly cat Sam.
‘Sam was my best friend, my confidant and rock,’ Jen told me. ‘He would keep me company when my dad was away, always sleeping on my bed.’
And so, when Sam stopped drinking, Jen carried him to the vet, retracing the journey towards the hospital where her mum had died. Minutes later she left empty-handed. Like her mum, Sam had gone into a building never to come out. This experience led Jen to study animal care at agricultural college before applying to Aberystwyth University.
After arriving at university, Jen’s nemesis was not the difficulty of the work nor the Welsh pronunciations, but the steep hill leading to her lecture theatre. Tying her shoelace was no longer enough, so Jen carried a digital camera, stopping to take photos during the breathless climb. She first rested halfway, then a quarter of the way a month later, then every 50 metres by Christmas. Jen’s breathing was getting progressively worse and deep down she knew she had the same problem as her mum. She started staying at the top of the hill all day, not returning to her flat and not going out with friends to avoid any long walks home. Jen lost her friends once again.
Without family to fall back on and her dad not around, Jen was virtually adopted by her boyfriend’s family, her ‘angels’, who lived on a working farm close by. By nineteen, after dropping out of university due to her health, Jen was given the diagnosis she knew all along and hoped wouldn’t be true. She had severe heart failure just like her mum. She needed a transplant just like her mum. And Jen thought that she would die just like her mum.
Incredibly, this realisation did not define her. It did not change her. It didn’t make her sad or angry or different. Jen rode quad bikes around the farm, worked outdoors as a labourer, went skiing on dry slopes. She was slow, had to stop frequently, but this was just life for Jen. And she wanted to grasp at every second of life to live it now, not then. She struggled, but her friends now knew that she was ill. And so they understood. They adapted.
Having knowledge and talking about her illness, but not being her illness, almost made Jen normal. In fact, no, not normal – but supernormal. Jen even went back to university.
‘It was just stuff to go through,’ said Jen. ‘It is much easier when it is happening to you. You have little control so why not go along for the ride? Life is life. All I wanted was to live life while I had one. Stopping would mean I had died while still being alive.’
How can we keep on keeping on when all is falling down around us?
The Sultan asked Solomon for a Signet motto, that should hold good for Adversity or Prosperity. Solomon gave him, ‘This also shall pass away.’
‘Solomon’s Seal’
by Edward FitzGerald, 1852
While the world around us can feel like a meticulously composed symphony, we find ourselves amid an impromptu jazz solo, grappling with the unexpected notes of life. Such was the case for renowned Portuguese pianist Maria João Pires, whose story is a tiny fragment of chaos compared with Jen but still resonates with the resilience, adaptability and the value of support in our most trying moments. Like Jen, she just had to see her mistake as ‘stuff to go through’ as there were no other options.
On a crisp autumn evening, Maria sat behind the grand piano at the heart of a bustling Royal Concertgebouw in Amsterdam. The 2,000-strong audience had taken their seats for an open rehearsal. Regarded as a leading interpreter of eighteenth-century music, Maria was the perfect replacement for a performance of Mozart’s Piano Concerto No. 20 in D minor after another artist had to drop out. In a video taken of the event, you can almost see the weight of anticipation pressing down upon her shoulders as the crowd fidgeted in their seats. With 4,000 eyes fixed upon her, Maria floated her fingers above the piano’s keys, ready to delve into the complexities of the concerto. As the orchestra’s first notes filled the air, Maria’s world came to a sudden, jarring halt.
In a split second, Maria’s meticulously laid plans crumbled. The concerto she had expected to play was ‘K.466’ after mishearing ‘K.488’ during a phone call late the evening before. Panic, sharp and unyielding, threatened to engulf her. Yet, in the midst of this turmoil, the encouraging glance of the conductor, akin to a lighthouse in a tempestuous sea, offered her a glimmer of hope. Like Jen’s adopted supporters, there was hope in others and well as in herself.
Drawing a deep breath, Maria closed her eyes, allowing the cold shower of fear to pass. With the conductor’s supportive gaze, he mouthed words of support. She mouthed back, ‘I’ll do what I can do.’ Maria embarked on an emotional journey through the notes of a piece she had not played in ten months. Each note a step in the dark.
When the concerto was first performed in 1785 many thought the whole thing was a big mistake. Audiences at the time saw concertos as pure entertainment. So when Mozart wrote a new concerto in a minor key, with aching anxiety and shivers of fear, he had taken a major risk. The picky Viennese nobility, on whose financial support Mozart depended, could have hated it. Instead, by breaking the rules, Mozart transformed the piano concerto for ever from joyful entertainment into a vehicle for deep emotional reflection.
So it was for Maria. She navigated the unexpected concerto, her music transcended mere notes on a page. It became a narrative of resilience, a melody of adapting on the fly – a harmonious blend of plans, mistakes and spontaneous recovery. The concert hall, once a daunting arena of expectation, transformed into a sanctuary of shared human experience, echoing with the warmth of collective support and understanding.
The standing ovation that greeted Maria’s final note was not just in admiration of her musical talent but in recognition of her remarkable journey from panic to poise. It was a celebration of her ability to dance in the rain, to turn a potentially paralysing mistake into a powerful, unplanned masterpiece.
Life, in its essence, is an improvisation. Our plans may serve as a guide, but it’s our ability to adapt, supported by the belief and encouragement of those around us, that shapes our most defining moments. In embracing our vulnerabilities and the unforeseen challenges that come our way, we uncover the strength to transform setbacks into opportunities for growth and learning. In many ways, everything happens to everyone. We will all have terrible and wonderful things happen to us.
As the applause faded, Maria’s journey through the uncharted waters of Mozart’s D minor concerto stood as a testament to the beauty of mistakes and the transformative power of support. It was a vivid reminder that, in the grand concerto of life, it’s not the notes we intended to play but how we play the unexpected ones that define our most memorable performances.
Perhaps jazz drummer E. W. Wainwright sums it up best, saying, ‘A mistake is the most beautiful thing in the world. It is the only way you can get to some place you’ve never been before. I try to make as many as I can. Making a mistake is the only way that you can grow.’
Jen didn’t know if she would live long enough to have a transplant. When at university she carried a bulky pager everywhere she went. During her final exams, the device flashed every few seconds while on the invigilator’s desk. In the summer, the time Jen had spent taking photos to slow down her walking led to her working as a wedding photographer. Soon, her images of wildlife captured in the New Forest hung on the walls of exhibition halls and art shops.
And it was during her search for wild deer to photograph that her life changed. Jen drove her fox-red Land Rover, dressed in wellington boots and waterproofs as Jack Johnson’s latest album In Between Dreams spilled out from the open windows. The melody of his song ‘Sitting, Waiting, Wishing’ was interrupted by the pager’s high-pitched beeping. A three-point turn in the middle of a country road took Jen back to her surrogate family’s farm as the Sunday roast was arriving on the kitchen table. A bag was hastily packed as an ambulance arrived to take Jen to her new life.
Jen was determined to make the most of the journey to the hospital. It could have been her last. ‘If I die, this is how I want people to remember me’ she told the paramedics as she sang loudly along to the radio sat in the front of the ambulance on the one-and-a-half-hour drive on blue lights the whole way. They bounced on and off the hard shoulder, parting lanes of cars like the Red Sea.
‘I expected to die like my mum,’ she told me.
Does it surprise you that Jen was so happy yet so ill? Was she just really brave? Would you sing along to the radio or turn inward? In today’s world of microaggressions and gaslighting, we should remember how amazingly resilient humans can be. Remember how strong you are.
Imagine if tomorrow you win the lottery. Within twenty-four hours, £10 million lands in your bank account. Life is transformed overnight. Now, contrast your new-found fortune with your next-door neighbour’s imaginary change in fortune. A tragic accident leads to their right leg being amputated. Within twenty-four hours, their life too is transformed. At first glance, your stroke of luck and their misfortune appear at opposite ends of a happiness spectrum. Yet, when researchers probed deeper in the ’70s study ‘Lottery Winners and Accident Victims: Is Happiness Relative?’, their findings challenged conventional wisdom about happiness and contentment.
The initial euphoria your experience as a new millionaire will gradually fade, a phenomenon psychologists call the hedonic treadmill. Your new wealth brings its own stresses and complexities, diluting the pure joy anticipated. Meanwhile, your neighbour, confronted with a reality that could easily engender despair, will likely embark on a journey of adaptation. They may find a deep spring of resilience and contentment that defies expectations. They are stronger than they think. We all are.
The critical lesson here, born from years of detailed research findings, is the human capacity for adaptation. Our happiness set-point, much like our ability to cope with stress, is remarkably malleable. We discover that external circumstances, whether fortuitous or catastrophic, only partially dictate our sense of well-being.
The study showed that happiness exists outside many objective life circumstances. Attitude and perspective colour experiences as much as actual events. These so-called contrast effects mean events seldom have set values – 1 point bad or 10 points good. Instead, we compare one thing to another. Meaning that winning the lottery is so good, it can even make other good things in life less enjoyable. Humans also quickly become habituated. After time, one leg doesn’t seem so bad, and £10 million doesn’t seem as good.
This tale underscores the importance of internal resources – grit, gratitude, perspective – in navigating life’s vicissitudes. It’s not the absence of stress that defines our well-being but our response to it. Understanding the complex interplay between luck, choice and resilience offers a richer blueprint for pursuing happiness.
In the end, happiness or meaning is less about what happens to us and more about how we interpret and respond to those events to an extent. It’s a reminder that, in the quest for well-being, winning the lottery is not the important bit, rather it’s having resilience, adaptability and perspective when we find out that we have lost.
Jen expected to die like her mum. So when she woke up after her transplant her words were simple. ‘I did it. I’m alive!’ She held up both thumbs and did a little happy dance. After just sixteen days in hospital, most of Jen went home. Her old heart stayed behind.
Every heart transplant procedure is remarkable, but the one I saw was nothing short of awesome, in the original meaning of the word. Sharareh Ahmadzadeh was a 28-year-old teacher who had travelled the world over seven years. While in Croatia, her last country before returning home to Australia, Sharareh became unwell with breathing difficulties put down to a simple common cold. But within weeks of being back at home, she was diagnosed with cardiomyopathy, or heart failure. Unlike Jen’s inherited condition, Sharareh’s heart problem was likely caused by a virus. Three weeks after her ‘common cold’, Sharareh was on the urgent heart transplant list.
Despite the fantastic people, facilities and healthcare system in Western Australia where Sharareh lived, there is a big problem – it is big. Really big. Western Australia is ten times the size of the UK yet with only the population of Wales. And while this makes it an awe-inspiring region to live and travel, Western Australia is terribly designed if you need a heart transplant.
When removed from the body, any organ has only a limited shelf life despite being put on ice. Hearts are particularly sensitive to being detached from their original owners and transporting them from any further away than Adelaide (around three and a half hours’ flight time) would be too far. So the likelihood of finding a good match for Sharareh within that tight time and geographical window was very small. That’s where a box comes into play – not any old cardboard box but a $500,000 TransMedics Organ Care System box. This technology allows patients in Perth like Sharareh to receive healthy hearts from places as far away as Sydney or even New Zealand.
Watching a glistening red heart arrive in a transparent box, squeezing, twisting and beating without anyone near it, was one of the highlights of my time working in the cutting-edge transplant unit in Perth.
After a heart is carefully removed from a donor, it is placed in the TransMedics’ sterile chamber and connected to a sophisticated perfusion circuit. This supplies the heart with a warm, oxygenated, nutrient-rich blood solution, maintaining conditions similar to those inside the human body. The heart is continuously monitored for function and viability, with real-time data on parameters such as temperature, pressure and flow rate. Unlike traditional cold storage, which limits transport time to a few hours, the TransMedics system can keep the heart viable for up to eight hours. This extended preservation time allows for longer transportation distances, ensuring that the organ remains healthy and functional until it reaches the recipient, thereby increasing the success rate of transplants and expanding the donor pool significantly.
After an eight-hour operation, Sharareh became the first person in the southern hemisphere to benefit from this technology, pioneered locally by surgeon Dr Robert Larbalestier. Sharareh has since returned to doing what she loves – working as a teacher, travelling and even running the 7.5-mile City to Surf charity race from Perth’s city centre to its ink-blue sea.
The ‘heart in a box’ is more than just a device; it is a symbol of hope and progress. It ensures that distance is no longer a barrier to life-saving transplants. It allows an ever-widening moral circle, where empathy and ethical responsibility should extend to all humans (and many non-human animals), irrespective of location. The heart in a box reinforces the philosopher Peter Singer’s vision of a more interconnected and compassionate world. The ability to share organs across great distances underscores global co-operation and mutual aid, demonstrating how modern innovations can bring us closer to realising a universally altruistic society. Sometimes, we need to think both inside and outside the box.
Eight years later, Jen was living an amplified life. Every day was a ‘yes day’, from climbing the tallest mountain in Wales, Yr Wyddfa, with her dog Bramley, to finding a job she loved helping young people excluded from school to learn outdoors. Then she fell in love. First dates are always tricky, but Jen’s tattoo on her left wrist of a heart in a jar was an obvious icebreaker. When her date inevitably asked about it, Jen’s answer would often result in no second date. People can be afraid to fall for someone with a complex health story. But when she met Tom, a healthcare software engineer, he just thought it was cool.
And eight years later, Jen read a letter that changed the lives of two families. During a routine hospital appointment, Jen’s heart specialist handed her a white envelope. Inside was a handwritten letter from the family of a person whose death had given Jen life. It is their heart that now beats inside her chest. Unlike others in this book, Jen will never be able to thank that person who saved her life.
But she remembers him everyday thanks to her heart in a jar tattoo. Waking up next to her now husband Tom, Jen opens her eyes every morning to what is written below the colourful ink heart – ‘vitam vive’, or live life. Simple. Yet we simply forget. We always exist on the brink of the unknown, the imperfect. Wait for absolute security before seeking knowledge or beauty or adventure, then you will wait for ever.
I asked Jen what advice she can give people reading this who have only known life and not death. She looked up and smiled. She recounted a time when someone shouted at her for parking in a disabled parking space during one of her lowest times. Being young she was seemingly healthy from the outside.
‘Be nice. Be kind. You never know what people are going through. But also, live life. Today. Use those plates you are keeping for a special occasion. Wear that special ball dress covered in plastic wrapping. In case that special day never comes.’
And eight years later, Jen was standing in the middle of a glass-clad, white-light-bright museum in London. She spent countless days looking at artefacts in display cabinets as a child due to her dad’s work collecting specimens from around the world. But this specimen was different. It was familiar yet Jen had never seen it before. It gave her life and yet also took her life away. A narrow single spotlight shone down from above on to a small glass box. The room was drained of colour apart from this pink and purple structure. Suspended in clear liquid sugar was Jen’s old heart.
How better to reflect on this life than to look at what gave you life in the first place. You don’t have to have a transplant to do that. Look at your parents or the stars in the sky.
‘Even when I am not here, when I die, my heart will tell my story to others. Perhaps it will make them think about their own life a little differently.’