Tag: heart transplant

Aye Write! 2021

~ Angela Hughes ~ Leave a comment

The email asked if I would be interested in taking part in this year’s Aye Write! book festival, to talk about My Heart’s Content. I read it three times to be sure.

What you grinning at? Paul asked. I read him the email.

Well are you interested? he said. I nodded vigorously and asked if he wanted a cup of tea. He raised an eyebrow.

I’m playing it cool, I said. Don’t want to appear too eager.

Half way to the kitchen, which in our flat is around 10 steps, my coolness, such as it is, dissipated and I rushed back to send my reply, fully expecting to see a message telling me my window for responding had expired and I’d missed the opportunity. Or dreamed it.

Let me set my excitement in context. For those of you who aren’t aware, Aye Write! is Glasgow’s annual book festival. As with the city in which it’s based, it is big, bold and friendly. And this year, it was online, which means you could buy a pass for the whole festival and watch at your convenience.

There were sessions about dealing with grief, and the healing power of nature. Rock stars talked about memoirs and authors talked about fiction being the new rock n roll. There were authors talking politics and politicians, including Scotland’s First Minister Nicola Sturgeon, talking books.

Participating authors included big hitters Andrew O’Hagan, Douglas Stuart and Maggie O’Farrell, alongside those less well known but equally brilliant, such as Helen McClory, Ruth Thomas and Jenni Fagan. And there were those just starting out, like me!

Scottish Debuts: Aye Write! Festival 2021

The Scottish Debuts, of which I was one, opened the festival, with a flurry of Tweets and a dance around the living room (in our house at least). The event was pre-recorded, which given my nerves, was just as well. We were each allotted a few minutes to do with what we wanted – read from our book, talk about our writing, grin inanely. I opted for all three.

And so, on Friday 14 May, there I was, reading from the book I had written, to an invisible audience (which would have included my mum, if she had been able to get the link to work on time) as part of one of the UK’s biggest book festivals.

Just another ordinary day then: aye right!

*Although the main Aye Write! festival is now over, you can watch the events online for up to three weeks from the date of their release. Check out Glasgow Life TV to find out what’s available.

The Scottish Debuts event is free and still available to watch for a couple more days.

To buy a copy of My Heart’s Content: A Journey to Transplant, visit Liminal Ink.

Before we bring in the new

~ Angela Hughes ~ Leave a comment

The last day of 2020. It’s been tough for most people, illness, financial insecurity, loneliness, fear. Loss of loved ones and being unable to say goodbye.

As hard as it is not to focus on all the difficulties of 2020, I wanted to reflect on the good that came out of it. The sense of community. Putting the welfare of others before ourselves. The imagination and ingenuity used to bring people together safely. The sharing and the hope.

For Paul and I we have a lot to be thankful for: though many of our friends were affected by the virus, we lost only one member from our extended family (although still one too many). Both sets of parents stayed well, despite an operation and several hospital trips. We had regular work and thanks in particular to our friends Gail and Shirish, we were never short of food.

We also had space and quiet to finally explore the experience of my transplant: the impact it had on both of us. Part of that was the publishing of my book, which opened up feelings we’d locked away, perhaps for the better at the time. Through talking about what happened we realised there were emotions deeply buried under layers of well-rehearsed anecdotes, used to divert attention from things too painful to contemplate. 

For several weeks during the production of my book, my sleep was interrupted by the image of the theatre doors, immediately before I was wheeled in for my operation, against the ghostly echo of Paul’s footsteps walking away. I would wake, shaking, heart racing in the remnants of a dream where I’d been abandoned, yet again, by Paul or my family or my closest friends. A skin-crawling fear of being ignored. Unseen. Of no-one hearing me. And on its coat-tails, guilt. Thoughts of those whose reality renders my worst fears insignificant. Of my donor and their family.

As with most things, time and talking soothed my fizzled body and mind and here, at the endpoint of a year like no other, I wanted to acknowledge, in writing and from my own perspective, the incredible resilience and kindness of those around me. For friends who wrote or called, who sent cards and texts (and penguins). Of neighbours who shared food and laughter. Of all those who gave so generously and supported so effusively the launch of My Heart’s Content. And family, of course family. Family who were there and are there. Always.

There’s no doubt the shadow of 2020 will reach long into the future, for many reasons and one in particular. But for me it was the year I published my first book. The year Paul and I fully realised the extent of our community. The year my mum began to finally recover. The year I gave my first interview as an author. A year where people actually read my words and liked them, loved them in some cases, and graciously shared their thoughts with me. A year which cemented old friendships, found new ones and reconnected with some who had temporarily gone astray.

For me 2020 was the year I transitioned to being an author. The one thing I’d always craved. A childhood dream fulfilled. The year I finally found my home.

HAPPY NEW YEAR!

Bring on 2021.

If you haven’t yet read My Heart’s Content and would like to do so, it’s available at: Liminal Ink

*Cover image for My Heart’s Content by Laura Donald

Putting it out there

~ Angela Hughes ~ Leave a comment

On Thursday 22 October, My Heart’s Content was officially ‘released’. There was no event, as such, but a number of those who supported the Kickstarter campaign and had read pre-release copies, took part in a literary flash mob – a fancy way of saying they shared pictures and encouraging words on social media. It may not have been grand but it was special. It laid down a marker: my first book was officially out there. Now there was the simple matter of bringing it to the attention of potential readers.

When Paul and I decided to set up Liminal Ink and publish my book ourselves, we weren’t without some experience in the area. Paul has a PhD in Publishing and we both have MLitts in Creative Writing. Further, as my book had originally been signed to a publisher, we had a wee bit of insight into how the process worked, and as a former press officer, I had some idea of promotion. However, there were a couple of things we hadn’t factored in: potential difficulties with distribution, and my mum going into hospital.

Undeterred we enlisted some help with promotion and decided that for now, we would handle the distribution ourselves. During a week off from work, fully masked and maintaining an acceptable social distance, we drove around Scotland, delivering books to our Kickstarter supporters. We hadn’t seen most of our friends for at least six months and despite partially obscured faces and muffled voices, being able to stand on a doorstep, or in a garden, or out on the street, and see people in ‘real-life’ was disproportionately exciting and emotional. The ‘you look great, have you done something different with your hair?’ jokes never grew tired; the urge to grab each of them and hold on for a very long time, never lessened.

Our mini-tour reinforced my belief in the value of community. It also reiterated my idea that the book was already a success. Sure the words ‘bestseller list’ and the title of my book were unlikely to feature in the same sentence any time soon (never say never), but the tingle of excitement I felt each time I handed over my book to someone would be hard to be beat, a sensation that would be amplified as people gradually began to give me their feedback. And yes, I do realise that those who didn’t like it would be unlikely to say so, or at least unlikely to say so via an email / phone call / text / WhatsApp message to me, but hey, don’t burst my bubble quite yet.

Back in the world of trying to reach other readers, Paul contacted some of the independent bookshops: a couple took it, others mentioned how they ordered their copies through a certain distributor. We applied to be included with said distributor and sent off our sample copy. It takes up to six weeks to be added to the stock list. If the distributor likes it. And so we wait.

Meantime we keep drip feeding social media. And leaving messages for book shops. Of course I’d love it to find its way into the hands of someone with a larger presence, a louder voice. Someone who, should they like it, could influence others. Act as a champion. At the same time I fight shy of actively seeking to get it to such a person. Why? Well that’s a question with no simple answer.

Perhaps because I love the thought of my book being discovered. Passed on by a friend brimful of my words. The story alive in their enthusiasm. I would be delighted if each person who reads my book would tell one or two others. That they too would like and share it with another. And somewhere along the way, my whisper of a story would become a raised voice and then a shout. On merit.

Or maybe it’s my unease with marketing, which developed during our MLitt, when a well-known literary agent visited to talk to us about the industry side of writing and publishing. One of the main pieces of advice was that writers should always be considering their potential readers, as well as where their book would sit in a bookshop – which genre; under what label. To make it easier for marketing. There was also talk of the ‘elevator pitch’ – the ability to succinctly describe (or sell) your book in the length of time it takes to ride in a lift, although it wasn’t clear how many floors you would be ascending and whether it would call at intermittent ones along the way. I find this element of writing hard. It seems cynical. Contrived. And yet I know that to make a living from writing, it was, and is, sound advice.

At the end of the talk, my perturbed expression attracted the attention of the speaker. I explained my disappointment that writing should be bound by an invisible audience; defined by a slot on an imaginary, commercial bookshelf. My naivety was audible even to myself. But it was more than that. For me, writing constantly evolves. And what I’ve discovered is that even after the book is written, the ‘story’ isn’t fixed.

When I wrote my book, I imagine my elevator pitch was along the lines of ‘firsthand experience of waiting for, and receiving, a new heart. Of what that means in real terms – an insight of how it feels to be suspended between life and death.’ I know, not terribly snappy but you get the gist. And the thing is, it is that. And it isn’t. What I discovered from early feedback is that some readers consider it a love letter: to family and friends; to our amazing NHS; to the kindness of strangers. To Paul. To the human spirit and the will to survive. And it is that too.

So if you do stumble across it, if you read it and like it, tell someone. Share why it moved or challenged or annoyed or fascinated you. What the story means to you. Because whatever you get from it, however you read it, that’s the book it was meant to be.

My Heart’s Content: A Journey to Transplant – available from: Liminalink.com

Organ donation: why it matters

~ Angela Hughes ~ Leave a comment

This week, 7 – 13 September 2020, is organ donation week.

On Christmas Day 2013, I received the most incredible gift; a new heart. In order for that to happen, my donor made the decision to allow their organs to be used after their death. A decision they would have taken when they were fit and well. Their family agreed to honour that decision on Christmas Eve when they were neck-deep in grief. Their kindness and generosity of spirit saved my life. It is something neither I nor my family and friends will ever forget and for which we remain forever grateful.

In my family we are doubly grateful. I’m not the first to be saved through heart transplantation. Over a decade earlier my father received a new heart, his at Easter. We consider ourselves an extraordinarily lucky family.

Nothing can prepare you for the sheer magnitude of being told you need a heart transplant. The idea of my living, beating (albeit not that well) heart being cut out of my body and replaced with that of another, was way too much for me to contemplate for any length of time (still is). The awareness that in order for me to have a chance of survival, to have a future, someone else was denied theirs. It never leaves me.

The best way for me to honour the life of my donor is to live mine to the very best of my ability. Of course there will always be time when I get stressed, or annoyed, or short-tempered, or down. There are days when I feel fat, or my hair annoys me, or I can’t find anything to wear. For a while I struggled with these feelings; believed I was somehow doing a disservice to the memory of my donor. For a time I put myself under too much pressure to be happy all the time. But not anymore. Now I accept all feelings as being part of who I am. The trick is not to dwell and to keep moving forwards.

In March next year, the organ donation system in Scotland is due to change to a soft opt out. Instead of signing up to be an organ donor, the onus will be on people who do not want to donate their organs to opt out. The hope is more organs will be available. I used to shudder at the reference to ‘organs’ and not to the person. Organ donation will always be an emotive issue. The reality is, the living, breathing person the potential donor once was, is no more. They live on in memories and shared recollections, not in body parts they no longer have a use for. I understand now why it makes sense to separate the personal from the medical.

When I first had my transplant the thought of my donor’s family and friends grieving for their loss haunted me. I struggled with whether I was ‘worth’ my new heart. Over time, and with the help of members of my medical team and the transplant clinic at the Golden Jubilee Hospital, I came to terms with the fact that my donor’s death had nothing to do with me. It happened regardless of my need for a new heart. The decision of my donor to sign the organ donation register was what connected us. I think of that often and it makes me smile.

“… heart transplantation is the closest thing to a miracle.”

Last week, Paul and I premiered a video we made about our transplant journey with the Public Health, Private Illness conference. If you would like to watch it, you can do so using the link at the bottom of the page. The video is personal and it was difficult for both of us to relive our experience in this way. We did it because we feel strongly that we should play our part in raising awareness of heart transplantation and organ donation.

For me, heart transplantation is the closest thing to a miracle.

Everybody who receives a heart transplant would die without one.

Paul and I recorded the video below to share a wee snippet of our story and to help raise awareness of organ donation. It’s about 15 minutes long.

If you aren’t already, please consider signing up to be an organ donor.

In Scotland: https://www.organdonation.nhs.uk/uk-laws/organ-donation-law-in-scotland/

For the rest of the UK: https://www.organdonation.nhs.uk

Almost there

~ Angela Hughes ~ 1 Comment

The few weeks since the end of the Kickstarter have been a whirlwind of tweaks, layouts and design decisions. And now it’s all done. The book cover design is finalised, the manuscript is typeset and print ready, and the e-book versions are complete. All that’s left is to send everything to the printer and wait for the book to arrive. The real-life, proper book.

Remember how it felt as a child on Christmas Eve, waiting for Santa, body tingled, eyes screwed shut, sleep elusive, willing time to go faster? That’s a fraction of the excitement simmering inside me. My Heart’s Content was a labour of love; an exorcism. It wasn’t my planned first book, nor even my preferred genre. It’s the one I couldn’t not write (double negative intentional and necessary). The end was a long breath out.

The prospect of writing memoir fascinated me – not so much deciding what to include but rather how to present it. When I arrived at the format of a day per chapter (I know, not exactly ground-breaking and yet it took months to get there), it freed me to be more creative with the content. With little experience of biographical writing, I began by reading other memoirs, across many subjects. For several weeks I inhabited the genre: from brain tumours to birds of prey. What struck me was the stylistic crossover between biography and fiction. The weaving of a story around a moment in time. None of the dry, factual text I had imagined but instead a journey into another life, a glimpse of a different world. A revelation.

“There is another side of writing a memoir for which I wasn’t prepared.”

There is another side of writing a memoir for which I wasn’t prepared. The emotional toll. Not the writing, which was almost cathartic, not even the reading of the story over and over, although there were moments where triggered memories were almost too much to bear. What I hadn’t expected was the underlying fear of those unknown readers. People with whom I have no connection, who don’t know my story, who have no vested interest in me and don’t need to be careful with their comments. What if these people don’t like it? Or actively dislike it? If it were fiction, it would still hurt but it wouldn’t be my story. I knew releasing a book into the wild would be tough but this extra dimension …

And yet.

Whatever the readers think, I’m proud of my book. I’m proud of Paul and my friends and family who helped me through my experience. I’m proud of our NHS and the care and dedication of the staff in the transplant unit of the Golden Jubilee Hospital. I’m proud of the team of professionals who proofed, edited, typeset, designed, primped and preened my book ready for its prom night.

My book’s all grown up. Time to make its own way in the world. All I can do now is let it go.

* My Heart’s Content is launched on Thursday 22 October. Backers from the Kickstarter campaign will receive their copies as soon as they are ready.

Lucky numbers

~ Angela Hughes ~ 1 Comment

Recently I discovered my transplant number. I didn’t know there was such a thing until another friend told me his. Mine is 333, which seems auspicious, though I’m not sure why (apart from the obvious). It means I was the 333rd heart transplant to be performed in Scotland since they began in 1991 in the Glasgow Royal Infirmary. I was the 53rd person to have the operation in the Golden Jubilee hospital, which is also the age I am this year.

All the threes

In general I don’t tend to attach significance to numbers and I often have trouble remembering dates. As for trying to set a date, for a wedding for example, or a book launch, I find it almost impossible. When Paul and I decided to get married we thought there was a very real possibility I would be dead within a few months. The results from the test they perform to make sure you’re suitable for a transplant weren’t looking good. The pressures in my lungs were too high. I didn’t know what that meant exactly but I did know that unless they could reduce them, I would not be eligible.

The test they perform to check the pressures in your lungs is called a right heart catheterisation. It involves threading a catheter through a vein in the right side of your neck. As far as I understand it, the test allows the doctors to observe blood flow through your heart – to see how well, or poorly, your heart is pumping. From my perspective, it involved injecting anaesthetic into my neck, before making a small incision into the vein, in order to insert the catheter. My doctor controlled the catheter via an x-ray image that I too could watch live, should I want to. Most of the time I didn’t.

Luckily those in my medical team were aware of my anxieties (which let’s face it seemed entirely reasonable, given the test involved sharp objects coming into contact with my neck) and would give me a wee bit of midazolam* to calm me down: the equivalent to a double gin and tonic. In combination with the soothing familiarity of the ‘sounds of the eighties’ escaping from radio station in the procedure room, this worked a treat. Most of the time I closed my eyes and allowed myself to drift away on memories of vodka-fuelled dancing in village halls in the Highlands. You know that much is true.

Gin and tonic

Over a 10 day period I was pumped full of drugs to try and reduce the pressures in my lungs. In order to be listed for transplant, my medical team had to be sure the high pressures could be reversed. Each time, just before the test, I would breathe as calmly and deeply as I could and will my heart to keep going, to pump a wee bit harder, please. I’m sure it tried its very best. But still the pressures remained high.

Each Friday there is a multi-disciplinary team (MDT) meeting to discuss those in need of a transplant. On Wednesday 4 December, I had another right heart cath (see how fast I slip into the lingo). My pressures were still too high. I was told my case would be discussed at the MDT. And then a nurse sat with me to tell me about other options, were I not to be listed for transplant. I was being prepared for the worst. When Paul arrived to see me later that morning, I asked him to marry me.

For 48 hours I wasn’t sure if I would be given a chance to live or not. My whole body was shaking from the drugs and fear. I wrote all my passwords on a scrap of paper in illegible handwriting ready for Paul, should he need to …

On the morning of Friday 6 December, the young cardiologist who had been the answer to most of my questions, arrived breathless at the foot of my bed. She told me they had decided to list me for an urgent heart transplant. It was 8.20am. The MDT meeting had started at 8am and was still going on. She had sneaked out of the meeting once the decision was made, so I didn’t need to wait a moment longer. It was one of the kindest things anyone has ever done for me. The man who would be my transplant surgeon later confirmed my listing.

I was added to the urgent transplant list on Monday 9 December. I received my new heart on Christmas Day. Just under a year later, on Saturday 8 November, I married Paul.

These are the dates I don’t forget. Nor will I forget the date my book is finally launched. All I need to do now is decide what date that will be. I’m thinking October. And when I decide, you’ll be among the first to know.

And if anyone ever wants to know my number, it’s 333. 

I might even get it printed on a t-shirt …

*Interesting fact about midazolam, not only does it cause drowsiness and reduce anxiety, it also makes you forget what happens. Even if I did feel pain during the procedure, I wouldn’t have remembered it. 

It also makes me giggle, causes my legs to become colt-like in their unsteadiness and my mouth to betray my intelligence – exactly the effects of a double gin and tonic.

Cheers!

For details of the Kickstarter campaign see: https://www.kickstarter.com/projects/myheartscontent/my-hearts-content

A sense of community

~ Angela Hughes ~ Leave a comment

It’s just over a week since I launched my Kickstarter campaign to publish my memoir about the time I spent on the urgent transplant list, waiting for a new heart. What a week it’s been. As many of you probably know, we hit our funding target of £1000 in less than an hour and a half; one hour 24 minutes to be exact but hey, who’s counting?

To celebrate the launch Paul and I invited our friends to share photos of themselves raising a glass at 7pm. The response was fantastic. I’m still reeling from the excitement. And I wasn’t the only one. Even if I hadn’t been refreshing the Kickstarter page with obsessive regularity, I would’ve known the exact moment I hit my target: from my mum!

Raising a glass for the launch

Paul answered the phone: 

Mum: ‘You hit your target!’

Paul [trying not to laugh]: ‘Really, we weren’t checking. Don’t tell me, it was you who pledged all the money using false names…’

Mum: ‘No! Although I would’ve done if I could’ve worked out how to do it!’

It felt fitting to launch the publication of my book in this way; for it to be a shared experience. During the wait for my transplant and the subsequent long recovery, I was supported by a community of positive, uplifting people. From my family and friends to hospital staff, workmates, even those strangers who would stop to ask me if I was okay or offer to carry my shopping. 

Even the journey of the book, from first draft to final, has been a team effort. Several friends contributed their perspective to my situation in the form of letters talking about how they felt when they received the news about my transplant. To help me start to write the book, I was mentored by Karen Campbell a Scottish author whose work I admire, who also read the final draft and provided me with a quote for the cover.

An early draft won a work in progress grant from Moniack Mhor, Scotland’s creative writing centre, where I was able to spend a week working with other writers to develop my manuscript, and a further week, several months later, to edit it. It also meant I was invited to read a section of my writing at the Ullapool Book Festival.

On completion, several friends read my manuscript and contributed their thoughts: from Lisa, who suggested I change the ending (or rather where the book ended – she was right and I did), to Stephen and Ali who made the first edits and helped the book to shine.

One of the good things to come out of the short time I was signed to a publisher was that it was professionally edited by Iain Maloney, another Scottish author who I also really enjoy reading. Iain immediately understood what I wanted to do with the book and every one of his suggestions improved it. He is responsible for the other quote on the cover.

When Paul and I decided to publish the book we sought the advice of those who knew more about the world of publishing than either of us. By my own admission I am not the most organised of people and it is an endless source of frustration for me that I have the kind of brain that struggles to follow instructions and is devoid of logic. Ade’s help walking us through the stages to publication, and warning us of the potential pitfalls, has been invaluable. 

What would you consider a success as far as your book’s concerned?

Thanks to Laura, the image of her embroidery on the mock up cover made a striking banner for the Kickstarter and an engaging visual when sharing the link on social media. We follow each other on Twitter due to our shared heart stories and Paul chanced upon her image when she posted her work in progress. We had just been discussing the kind of image I was thinking about for the cover of the book.

‘Is this it?’ he said, turning his phone to show me.

It was; is.

On top of all of this, there are 77 people (so far) who have decided to take a chance on my writing and support my book. Some are friends and a small number have read earlier drafts, but most of them haven’t. It’s a leap of faith from each of them for which I am grateful.

‘What would you consider a success as far as your book’s concerned?’ Paul asked me during a walk along the beach a couple of days ago.

‘It already is’, I said.

A new way of doing things

~ Angela Hughes ~ 3 Comments
Angela in her favourite green dress

Today I’m wearing my favourite green dress, the one I wore at the weddings of two sets of friends last year. It’s loose and the colour makes me smile. I’m wearing it because later today, along with my husband Paul, I will launch the Kickstarter campaign to raise money to help me fund my first book. And because I cried during my daily meditation (more on that later).

At the end of 2016 My Heart’s Content, the memoir I wrote based on my time on the urgent transplant list, was signed to a publisher, with a provisional publication date of spring 2018. At the news Paul bought me flowers and prosecco and we ate chips in gravy for tea. The publisher was my first choice and the only one I had sent my manuscript to for consideration. I couldn’t believe my luck. In 2017, before my publication date, the publisher went into liquidation and my mum was diagnosed with a brain tumour. Priorities shift. Things change.

Three years on the world is on pause. My mum’s recovered and after much discussion, my husband Paul and I have decided to use our ‘staying in’ time to publish my book ourselves. 

We both believe in making things happen; in taking creative control, though sometimes there’s a lag between our belief and the actual doing. We love that the literary world is beginning to embrace and celebrate those who take initiative and either self-publish or form collectives to share knowledge, expertise and enthusiasm and get things out there. 

I did try the traditional route. With the help of a friend we knocked on the doors of some of the bigger publishers. The rejections were positive but apparently books about heart transplants don’t sell, or at least don’t sell enough. Unless you’re a celebrity. Which I’m not. Except when I’m headlining Glastonbury in the shower, but that’s another story.

Embroidered heart by Laura Donald
Embroidered heart by Laura Donald

For me, and I imagine lots of authors, it’s not about the money, well not completely. Of course it would be amazing to write a bestseller and retire off the profits but I think the lack of wizards in my book precludes me on that score. The thrill for me is the thought of someone reading what I’ve written. And liking it. Or not. (But preferably the former.) The sheer joy of getting my words out there. Of sharing my story. It’s the equivalent of standing on stage and hearing the audience sing your words back to you, even if that audience consists of two slightly inebriated punters, a tired barman and a random dog. At least I imagine that’s the equivalent.

But there’s a cost involved to writing a memoir about such an intimate, life-altering experience. An emotional toll, payable each time you relive the moments of terror and desperation. Each time you try to describe how it feels to be utterly exhausted and yet to fight the sleep you so badly need, night after night, for fear if you succumb, you may never wake up again. Or the pain of catching the momentary slip of a smile on the faces of those you love when they see you for the first time in hospital, hooked to a drip; your drug-induced tremble, skin slackened and grey. The guilt of knowing your future relies on someone else being denied theirs.

During the preparation for the crowdfunding, I’ve found myself in a head-on collision with memories from that time. Of willing the pressures in my lungs to reduce, or my kidneys to keep working. Dreams filled with abandonment, by Paul, my family, my friends. Relief on wakening to find I’m not in a hospital room with hermetically sealed windows. Delight at the breeze on my face, the ability to turn over in bed without fighting for breath.

In this morning’s meditation, breath even, mind beginning to settle, I was suddenly back in that hospital bed, being wheeled along a corridor, lights passing overhead. Paul at my side, holding my hand. And then the point where we stopped; the theatre doors. The discrete turning away of the accompanying theatre staff so Paul could say good bye. That’s when I realised I was crying. Silently. Relentlessly. The moment when I knew there was a real possibility I would never see Paul again. Or my family and friends. And for a few moments it was more than I could bear.

That’s the emotional price you pay.

That’s the reason I’m wearing my favourite green dress.

But it’s worth remembering that when time is limited, there is joy to be found in even the smallest of things: a bedside Christmas tree gifted by one of the nurses; unexpected chocolate from a friend; penguins in a text; the softness of a cashmere scarf; the touch of a loved one; the drawings from your cousin’s children; the laughter from across the ward of those who have already had their transplant. Pink fizz and Paul in a festive jumper!

I wrote My Heart’s Content as a story but hoped it would also help raise awareness of heart transplantation and what it means in real terms. Organ donation and the change to an opt out system in the UK is a current issue and my story provides insight to the flip-side of the subject – to what it feels like to wait for a new heart, knowing that your chance to live depends on someone else dying.

As I say on my crowdfunding page, it’s the best book I could’ve written on a subject I would not have chosen to write about. 

I was compelled. I owe it, somehow.

For details on how you can support the project, have a look at our Kickstarter page: https://www.kickstarter.com/projects/myheartscontent/my-hearts-content

I hope you like it.