When we first meet Ailsa Rae, she is dying. She has lived with a heart condition since her birth and is waiting for a transplant. She has a blog and has blogged about her experience as a patient on the organ registry. She has also had a best friend, boyfriend and a fellow patient in Lennox.
Just as Lennox dies, a heart becomes available for Ailsa. And this is the story of how she learned to live instead of existing.
Months later, she is doing well physically but not so much emotionally. It is going to take a bit of time to stop feeling fragile and stretch her limits. She has ups and downs and uses her blog to ask her followers advice in poll form. She’s missed out on so much and now she needs to learn to be healthy and alive.
I loved her mum. What a woman she is! And she has always been there for her only child. Now they both have to figure out what their new roles and lives will be.
Her new heart is strong and thumping along and it makes itself at home in her chest, she must learn to not only protect it but to listen to it and claim it as her own.
A good story. There were a few discrepancies, but all in all a good story.
NetGalley/ St. Martin’s Press October 29th, 2019 by St. Martin’s Griffin
6 October 2017
Hard to Bear
It’s 3 a.m. here in cardio-thoracic.
All I can do for now is doze, and think, and doze
again. My heart is getting weaker, my body bluer. People
I haven’t seen for a while are starting to drop in. (Good to
see you, Emily, Jacob, Christa. I’m looking forward to the
Martinis.) We all pretend we’re not getting ready to say
goodbye. It seems easiest. But my mother cries when
she thinks I’m sleeping, so maybe here, now, is time to
admit that I might really be on the way out.
I should be grateful. A baby born with Hypoplastic Left
Heart Syndrome a few years before I was would have
died within days. I’ve had twenty-eight years and I’ve
managed to do quite a lot of living in them. (Also, I’ve had
WAY more operations than you everyday folk. I totally win
on that.) OK, so I still live at home and I’ve never had a
job and I’m blue around the edges because there’s never
quite enough oxygen in my system. But –
Actually, but nothing. If you’re here tonight for the
usual BlueHeart cheerfulness-in-the-teeth-of-disaster,
you need to nd another blogger.
My heart is failing. I imagine I can feel it floundering
in my chest. Sometimes it’s as though I’m holding my
breath, waiting to see if another beat will come. I’ve been
in hospital for four months, almost non-stop, because
it’s no longer tenable for me to be at home. I’m on a drip
pumping electrolytes into my blood and I have an oxygen
tube taped to my face. I’m constantly cared for by peo-
ple who are trying to keep me well enough to receive
a transplanted heart if one shows up. I monitor every
icker and echo of pain or tiredness in my body and try
to work out if it means that things are getting worse. And
yes, I’m alive, and yes, I could still be saved, but tonight
it’s a struggle to think that being saved is possible.
Or even likely. And I’m not sure I have the energy to
And I should be angrier, but there’s no room for anger
(remember, my heart is a chamber smaller than yours)
because, tonight, I’m scared.
It’s only a question of time until I get too weak to sur-
vive a transplant, and then it’s a waste of a heart to give
it to me. Someone a bit better, and who would get more
use from it, will bump me from the top of the list and
I’m into the Palliative Care Zone. (It’s not actually called
that. And it’s a good, kind, caring place, but it’s not where
I want to be. Maybe when I’m ninety-eight. To be honest,
tonight, I’d take forty-eight. Anything but twenty-eight.)
I hope I feel more optimistic when the sun comes
up. If it does. It’s Edinburgh. It’s October. The odds are
about the same as me getting a new heart.
My mother doesn’t worry about odds. She says, ‘We
only need one heart. Just the one.’ She says it in a
way that makes me think that when she leaves the ward
she’s away to carve one out of some poor stranger’s
body herself. And anyway, odds feel strange, because
even if my survival chances are, say, 20 percent, what-
ever happens to me will happen 100 percent. As in,
I could be 100 percent dead this time next week.
P.S. I would really, really like for one of you to get your-
self a couple of goldsh, or kittens, or puppies, or even
horses, and call them Cardio and Thoracic. My prefer-
ence would be for puppies. Because I love the thought
that, if I don’t make it to Christmas, somewhere there
will be someone walking in the winter countryside, let-
ting their enthusiastic wee spaniels off the lead, and
then howling ‘Cardio! Thoracic!’ as they disappear over
the brow of a hill intent on catching some poor terried
sheep. That’s what I call a legacy.
From The Curious Heart of Ailsa Rae by
Stephanie Butland. Copyright © 2019 by
the author and reprinted by permission
of St. Martin’s Publishing Group.