Opt for Life

This morning, at an hour with which we’re not very familiar, before even the weather had decided on its choice of wardrobe, Mr D and I stumbled into our car and headed south to the Scottish Parliament in Edinburgh. We arrived at the top of the Royal Mile:

‘Shall we park here and walk down or should we try to get a bit closer?’

‘Here’s fine, it can’t be that far, we’ve got plenty of time.’

Turns out it’s called the Royal Mile for a reason. By the time we arrived, our half hour surplus had dwindled to minutes and security took care of those. At least the sun was out.

Brian and BiboWe were there to show our support for a Private Member’s Bill launched by MSP Anne McTaggart – Transplantation (Authorisation of Removal of Organs etc) (Scotland) Bill. The bill proposes that Scotland move from an opt-in system of organ donation to a ‘soft opt-out’ one. In other words, rather than signing up to be a donor, it would assume everyone to be one unless they have specifically registered their wish not to be. The soft opt-out also allows for the family or a registered proxy to object if they know or have reason to believe that their loved one did not want their organs to be donated, or if they themselves are against it.

Regular readers of my blog will know that I received a heart transplant 18 months ago on Christmas Day. I was one of the lucky ones. Every day, people across the UK, die whilst on the list, waiting for a transplant. In Scotland, public consultation suggests that more than three quarters of the population are in favour of organ donation yet less than half are on the donor register. The Transplantation Bill would help bridge that gap.

But for the kindness of a stranger and the courage of their family, I wouldn’t be here. It’s impossible for me to express how grateful I am. My heart transplant didn’t just save my life, it gave me a future that as little as two years ago, I could only have dreamt of. A future where climbing stairs, walking to the shops, sleeping on my back with just one pillow, bending to tie my shoes, getting out of the shower unaided, dancing at my wedding, and all the other things I never believed possible, became a reality.

Over the last year and a half, I’ve met several people who’ve also had heart transplants and all of them not only appreciate the value of the gift they were given, they also treasure every moment of their new life. They know what it cost someone for them to be alive and they have no intention of squandering it.

IMAG0358 (2)I don’t pretend to understand the bureaucracy involved in passing a bill into law. I do know that, at this stage, it’s important that as many MSPs as possible lend their support to it. To help this process along, if you agree with the bill, you could contact your MSP and ask if they have added their name to it and if not, if they would be willing to do so.

It’s a cliché but life really is short. Organ donation not only saves lives it transforms them – the aim of the new bill, if passed, is to improve the chances of a transplant for more people in Scotland. In Wales, the law is in the process of being changed in this way and in countries around the world it already is so. Hopefully, Scotland will soon follow.

Find out more on the Opt for Life campaign, led by the Evening Times, here.

For those interested in reading some of my own writing, The Jungle Rock, is the extract based on my own experience on the urgent transplant list, as published in the Next Review. It forms part of my unfinished LPoW (Longer Piece of Writing).

***  The photos are of my friend Brian with a self-portrait painted from a photo his wife Bibo took whilst he was in ICU immediately after his transplant, and of Bibo with part of one of her sculptures – a bronze cast of her face. Both are part of their exhibition, The Shared Heart, which I wrote about in my last blog.

What a difference a year makes

December 23rd

From the window I see a river, wind-whipped trees, a sky all but obscured by dirty clouds. Same as last year. Same but different. The river is the Forth not the Clyde, the view is from my sofa not a hospital bed. And I am different too. I am the person who dances to White Christmas in the supermarket aisle, who bounds upstairs with a giggle in each step, who walks without pause, cycles with an enthusiastic wobble. Gone are the days of lying on the floor fighting for breath, crawling from the living room to the kitchen, crying in the night rigid with fear and unable to move lest my next breath not come.

There are other changes – physical and emotional. I weigh a little more but care a lot less. A soft downy hair covers most of my body; I’m scarred but no longer scared. My face is steroid-rounded but the grey base-colour of old is tinged pink, with lips that no longer need cosmetic enhancement just to look the normal side of healthy.

December 25th

A year ago today, at 10.45am, they wheeled me in my hospital bed, down a long corridor, past intensive care, before stopping a few feet from the entrance to the operating theatre. Time for Mr D to say goodbye – no non-theatre staff beyond this point, the notice pinned to the wall dictates. The staff discretely talk among themselves to give us time to say goodbye, except we don’t, say goodbye that is, he just leans over, kisses me, brushes his hand along the side of my face: see you later he says. I give him a weak smile, he returns it amped up with hope, fringed with half-hidden anxiety. When we move again we leave him behind. I don’t look back but I know he watches me go through the double-doors. Minutes later I’m treading time in a world suspended between life and death. I will remain there for the next 48 hours and will remember nothing.

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Mr D occupied himself with guitar playing and crap TV. He ate Christmas dinner alone in my, now empty, hospital room and had no-one to pull his cracker. He returned to his hotel room and between bouts of texting, paced and dozed. Family and friends kept in touch throughout the day whilst he struggled to hold on to reality. After hours of waiting he walked back to the ward. No word yet but they directed him to the waiting room for intensive care. Two more hours more and then word that I’m through and in post-op. It’s 8pm. A further couple of hours and the surgeon appeared, scrubbed and exhausted, a full 24 hours since he received word that a heart was available. His Christmas Eve was spent grasping at sleep between hourly updates. The operation began at 1.45pm and finished at 6pm. I’m glad these details were kept from me until after the event. He says the operation went well, text-book. Mr D is delighted but unable to shake his hand, an unexpected reaction he tells me later. He rectifies this the following day.

untitledThis year I wake just after mid-night on Christmas Eve. Thank you I whisper. And to you, I whisper, leaning over to kiss Mr D’s shoulder before drifting back to sleep.

Christmas has always been magical for me but more so this year. We spend it with family: unwrap presents, drink fizz, walk in the frost-ridden countryside, play silly games, laugh and sing. To absent friends and the kindness of strangers, we toast at dinner.

But for the brilliance of my surgical team and the courage of a family I’ve never met, I wouldn’t be here today. I am in awe of their selfless generosity – they gave me the most amazing Christmas present imaginable; a future.

But for my family, friends and Mr D, that future would not have been so hard fought for or so much appreciated. It hasn’t always been easy but it has been worth it. Every moment of it.

Thank you.

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For information on organ donation see: Organ Donation Scotland and Organ Donation UK.