Lucky numbers

July 28, 2020September 4, 2020 ~ 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 333^rd heart transplant to be performed in Scotland since they began in 1991 in the Glasgow Royal Infirmary. I was the 53^rd person to have the operation in the Golden Jubilee hospital, which is also the age I am this year.

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.

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

July 13, 2020September 4, 2020 ~ 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!

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

June 22, 2020July 13, 2020 ~ Angela Hughes ~ 3 Comments

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.

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.