Organ donation: why it matters

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

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.