Tag: organ donation

With a little help from my friends?

I don’t usually share fundraisers, and I don’t have any time for often vacuous fundraising campaigns, but this one is so far from vacuous, I don’t even know where to start. I’ve said time and time again that Cystic Fibrosis is a fucker of a disease. It takes everything both necessary and dear to you – your breath, your mobility, your dignity, and then your life. As I roll through life, it just keeps taking. The only thing it’s ever given me is an almost debilitating sense of fear.

So I’ll cut to the chase before I *totally* lose my shit.

I grew up with a lad called Matty Kidd. – one of those rough and tumble really good kids. We both loved metal, and even though he wasn’t in hospital too much growing up, he was one of those kids that left an impression. I was so surprised when Matty contacted me earlier this year. If I’m truthful, I’m always a little taken aback when a CF’er I haven’t heard from in a long time writes me or shows up at a funeral because the simple and brutal truth is that they’ve died – I just haven’t heard about it. The CF grapevine doesn’t work like it once did, because there’s only few of ‘old skool’ CF’ers left.

Matty’s partner Racheal had just given birth to a healthy son – he was a Dad! Matty sent me photos of him and his beautiful baby boy, and I cried tears of joy that Matty was still alive and that he now had a beautiful little family of his own. He’d been assessed for a double lung transplant, and while he had all the normal fears, he knew it was the best decision he could make for his young family.

Last week, Matty received his transplant but he suffered catastrophic complications shortly after and he died over the weekend. He leaves behind a shocked and bereft family and friends, and my beautiful friend Kate – also a double lung transplant recipient – has created a gofundme page. Ironically, Kate and I have rolled our eyes in the past at the entitlement of people who use crowdfunding for things that aren’t for something legitimate like medical expenses.

The reality is, Matty’s family need financial help as they plan his funeral, and to prepare for a future without their son, partner, father, brother and friend. I can’t even imagine having to face such a thing. If a potato salad can raise $55K on Kickstarter (I’m not even joking), then we can do better than $20K for real people. So I guess this is where I share the link. I’d be ever so grateful if you or anyone you know could donate to this worthy cause – https://www.gofundme.com/please-help-towards-jakes-future

Matty, you will be so desperately missed. Your memory will be kept alive for your little boy by everyone who was lucky enough to know you.

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Jake’s ‘birth day’
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Matty, with Jake and a PICC line in his arm to administer intravenous antibiotics.
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Rachael, Jake and Matty
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Father and son …

Transplanniversary, with a solar eclipse chaser

We all reach places in life. Crossroads, turning points, junctures, choices, decisions – even Rubicon moments. For me, after nineteen years, I’ve reached a place of happiness and peace having come into the quiet of my heart. I feel settled. Life is simple, so I’m going with the ease and grace of that.

I’ve done a lot of letting go since I did some deep spiritual work earlier in the year. Relationships, patterns, behaviours, concepts, survivor’s guilt … the list goes on. We all release shit as our lives evolve, and it just so happens that this has been the year to let go of shit that just doesn’t serve me anymore.

Last night, I did a solar eclipse meditation where I anchored myself to the ground, and drew in the energy of the stars, the sun and the moon, and plugged into cosmos. This morning, I released it. I splintered it into a trillion pieces so that soft shards of love went to every human, animal and plant. Then I made myself a cup of tea, and sat in the garden; the sun at my back, the wind brushing my skin, and the hum of bees and the prattle of birds in the peach tree.

There was no rush. Just the warmth of the sun above me, a hot cuppa in my hands, and two dogs that came to greet me after their breakfast.

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It’s hard to believe that as I write, this time nineteen years ago I was on life support in intensive care after having surgery for a double lung transplant. I very nearly croaked it, as my friend Nic would say, and over the years I’ve come far too close to dying more times than is comfortable.

Like last year, I’m going to mark this year’s Transplanniversary by having an otherwise ordinary day. There’ll be no celebration. Instead, there’ll be a silent commemoration for my donor and her family who I know are still grieving after nearly two decades. A family who will grieve for their daughter, sister, wife and friend until the end of time. That is something that is never lost on me. Not ever.

There’s so much grace and wonder in the every day, and we forget that it’s even there. We’re all guilty – focusing on shit that shouldn’t concern us, like what people think of us, our beliefs and values, how we look, how we should act, how to go about our business, life, relationships.

The older you get, the less attention you dedicate to what others think about how you should be living your life. You only get one, so my hard won advice is to gather yourself up and find the marvellous in the mundane (for some strange reason, doing laundry brings me unparalleled joy), and revel in the fact that after all these years, Dr. Seuss is still right – ‘today you are You, that is truer than true. There is no one alive who is Youer that You’.

So go and grab your beautiful, messy life by the vagina (they’re far more resilient than balls), and shape it into something you’d be proud to look back on either at the end of the day, or at the end of your life. In the end, the only thing that matters is the love you give, the love you share, and the love you get back. Oh, and be kind, compassionate and do your best to help other people. That’s the secret to true happiness. You can thank me later.

Endnote: My mum turns seventy next week. She has loved me, nurtured me, taught and guided me. She’s been the kindest, most loving and selfless mother a person could ever ask for. Yeah, I know – that’s a lot for a person to be, but she’s been all that and more. Jewel by name, and Jewel by nature. Also the bravest person I know. Love and kindness is the answer, people.

A trip of infinite sadness and regret

I’ve been sorting through index cards, rogue pieces of paper and old photos because I’m moving. Moving out of the city, and returning to the trees and all of the secrets they’re waiting to tell me. They’ve been calling me for a while, and it’s time. I’ve become weary of city living over the last couple of years, and the more time I spend at the farm, in the bush or up in the mountains, the more I yearn to be in silence, amongst the trees and the stars, harvesting bush lemons, herbs and having a veggie garden with a couple of rescue chooks. Maybe even a rescue dog one day.

People ask me if I’ll miss living so close to the city. No. And yes. I won’t miss the sirens and incessant traffic, the dust, the cranes, or the crimes against architecture which seem to spring up while I am sleeping. I will miss the sunsets out to the west, watching the lights come alive in the Gotham City building, my many murders of crows, and the kookaburras, rainbow lorikeets and magpies that gaggle in the trees every afternoon. Perhaps they might like to follow me if I ask them? I suspect that there are going to be many murders of birds and other wildlife where I’m going.

There are people I’m going to miss, but I can visit them, and they can come by any time. It’s just that it’s time for me to move on, and when an almost inconceivable opportunity presented itself, I leapt. It was a quick decision, but most of all, it was an easy decision (which are the best kinds of decisions).

I’ve started packing, and that’s where I found a bundle of index cards and rusty paperclips from a couple of my trips out to Barcaldine – another place that calls me, and one I hope to see later in the year. Below is some writing from 2001 and 2002 – long before I’d found my writing voice (I’m still finding it) – and it’s about my time at Cumberland, the cattle property where my dear friend Meagan grew up. Meags died in May 1999, and I have mourned the shit out of her. You cannot imagine. Or maybe you can. Grief is one cruel mistress.

In 2001, I finally got out to her family’s cattle station to see where Meags had spent so much of her life; a place she had wanted me to visit when we were both well enough. But that wasn’t to be after Meags died in May 1999 from Cystic Fibrosis – the illness we were both born with. The last time I went out was in 2013 when I was addicted to opioids. A part of the reason why I decided to get clean was because I was alive, and Meags was not. I realised that I needed to recalibrate my compass, so that’s exactly what I did. I daresay the next trip will be very different.

An infinite trip of sadness and regret

Thursday 9th November, 2001

Stock and forty degree anarchy

Here I am at Cumberland, wrestling with hollow hope that the clouds, thick and full of promise, might crack open and give me a belated baptism. Blue funny faces remedy the forty-three degree fever for one quick minute, the coloured ice glossing my lips until I’m a pale shade of cyanosis. Swigging down coffee doesn’t sit well with the melting barbs of ice in my throat; my teeth frozen in a futile resolution to my thirst.

Frogs croak with my hot feet moving across the floorboards, so I walk outside and sing to them. I sing to them that we are missing the rain, too. Cumberland and surrounding properties are still on town water for now, but for how much longer we do not know. We do runs around the paddocks dropping off licks for the cattle, making sure they have enough water, the grass and wayward sticks whacking the ute. I wonder if the stock will be here when visit next. The cattle aren’t fat by any means, and look like the animal kingdom’s walking dead.

A palomino dropped dead yesterday afternoon from colic. The mare had been sick for days, splayed on her side to draw out the pain, her gut distended as though she was ready to foal. Just before Kerry went to get the shotgun, she got to her feet, hobbled over to the fence, and dropped to her death in the dirt.

The stock will not die from colic. Instead, they will starve and thirst until rib cages protrude through paper thin hides; craggy, matted hair shrouding more bones and bleeding skin.

I try to write and I sit under the weeping willow waiting for the words to come, but they do not. The arbour is green, and it grows grapes, although I don’t know how productive it is. It looks like a green and twig laden blanket, covering wire and wood, and it moves me with the breezes that roll through the garden.

A hot, bullying wind has risen, and the sky has swollen with charcoal coloured nebula – clumps of hope just out of reach from where we stand sentinel on the prickly grass. I’ve never felt rain on my skin out here, and doubt I ever will. At night, I dream of pellets of rain popping on my skin, and me – coming alive in the mud as the water volleys against the dry earth.

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In the city, I’m in limbo. I feel shackled and ambushed. Out here, I am free. I eat cheese and tomato jaffles and icy poles, drink hot coffee and cold beer – all the while looking at coloured vignettes of Meagan, her eyes like chocolate discs swimming on her face – her blonde hair swathing her young neck, olive and soft.

I feel a sense of permanence here. Something like belonging. I don’t know why I come here. It could be to be close to Meagan – to sit at her grave and memorial garden in silence. It could be to air my regret at not seeing her the day before she died. It could be to tell her what’s been happening – we always loved hearing about the other was up to. What adventures we’d found, what adventures had found us.

Or it could be so I can remember her, and to read those words on her epitaph – ‘Rest, little one, rest.’

Wednesday 2nd October, 2002

I woke late in the night and had a skirmish with what looked like a bird eating spider above my bed. After I’d half-killed it, it showered me with its babies. I trundled off to the shower thinking that it never feels right killing a sentient being.

In the morning, Sue still had the bread out on the table and the kettle and been boiled. The Walker’s had an ironic thirst for coffee. Ironic, purely because they can drink several cups of the stuff in forty-seven degree heat. The office and the bedrooms are air conditioned, and Jay had said year after year that he’d have the whole house cooled. ‘Maybe next year,’ Sue said last night.

Today had been no different after looking at the weather station that had been Jay’s grandfathers – the arrow pointing at ‘dry’, with the temperature stuck on forty-one.

In the afternoon, we transplanted two trees. The first one looked like it had more guts to it – fatter trunk, leaves more evenly splayed with plump branches, and not on too much of a lean. The other was brittle and grey like a ghost gum, its threadbare leaves devoid of a middle vein running through the ashen foliage. It didn’t have much spirit about it.

And so, today was the tale of the two trees. Kerry dug them out from the old station hand’s quarters where the grand bull ring once stood, the excavator bouncing around like a feather on the wind. His kids visiting from Warwick looked on as their Dad tried to uproot the trees as gently as one can with an excavator, and one by one they sprung up and out of the earth, averse to being torn away from their tree family. Kerry drove them back to the homestead, and gently set them down into where he had scooped out the dirt – Katrina pointing her freckled hand at where they needed to be. She had left a hose in each to saturate the soil, and when both were in, we watered them for another half an hour, and soon enough the weakling was on a lean.

Jay poured a rum for himself and a wine for Sue. Katrina and I had a beer each, our eyes mulling over the flat plains as the sun dropped behind the spine of the mountains far away.

Jay, a man of few words, looked over at the trees and said something about ‘waiting and seeing’. This day, like every other day, had carried with it thoughts of his daughter who didn’t survive, then he looked to the girl who did, with a lopsided grin. Me, a bottle of beer in my hand, lost in the stars of an inky sky that will always lead us home.

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Where in the world are you, Carmen Sandiego?

Life. It gets in the way. That’s why I haven’t blogged for three months because there’s been a lot going on. For the last month or so, I’ve been down with the lurgy (the flu), but after two courses of antibiotics, probiotics, lots of vitamins, good food and rest, I’m on my way to being back to full steam ahead with my year.

Exciting stuff is happening. I’ve been asked to be on the organising committee for next years Spiritual Care Australia conference which will be on the Gold Coast. As a pastoral carer who identifies as ‘spiritual’ but doesn’t belong to a specific faith group, I was so heartened to be invited. I am yet to make it to a meeting because I’ve been unwell, but I’ll make up for it in the months to come.

I cut my hair off last week. It’d been falling out at a rate of knots (ha), and having had it cut shorter, I seem to have stopped shedding. Just like that. It feels strange to be so short (yeah, I know it’s still long, but it was ridiculously long). I’m feeling … fresher. Yeah, that’s it. Fresher. Younger too, which is interesting considering I’m forty this year. I took this this photo after I rolled out of bed for my hairdresser. I know I’m looking a little grey.

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So, here is what’s been happening with me …

Making: Crocheting my first blanket. There will be crying Nicolas Cage style, fist pumping and gallons of tea. My maternal grandmother who taught me how to crochet when I was a little girl would be chuffed.

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Cooking: Chicken soup and green smoothies.

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Drinking: Tea. Endless cups of tea. And kefir. I cannot get enough kefir with a generous dash of honey and cinnamon.

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Wanting: A cabin in the woods/hinterland.

Looking: At cabin porn (there’s a theme emerging, yes?). Clouds at sunset, too.

Dreaming: About toasting marshmallows on the burn pile at the farm.

Playing: Diabetic Wheel of Fortune.

Deciding: What the fuck to have for dinner.

Craving: Sweet milky tea, liquorice and normal blood glucose levels (which are incompatible with liquorice)

Wishing: I was living in northern NSW. I feel between worlds. Or like I need a bridging visa or something.

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Pissed: That I caught the flu and it’s still affecting me a month later … Get the fucking fluvax, people.

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Enjoying: My growing collection of minerals. Or crystals, if you want to call them that.

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Waiting: On more words to come. I know they’re there.

Liking: The unfurling of cooler climes. It was a long, hot summer.

Wondering: If I will ever get this novel finished … #yesiwill

Loving: My new balcony chairs. They are epically comfy.

Considering: Spinning wool, falconry and starting my own religion. The latter would be far more lucrative.

Reading: ‘Norwegian Wood’ by Lars Mytting, ‘Gathering Moss’ by Robin Wall Kimmerer; ‘Konmari’ by Maree Kondo; ‘A Ted Hughes Bestiary’ and ‘Hildegard of Bingen’s Medicine’ by Doctors Strehlow and Hertzka.

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Buying: Nothing. I’m Konmari-ing the fuck out of my life. If it doesn’t bring me joy, it goes to charity.

Watching: I just watched ‘Dear Zachary’ and it made me want to cry forever and ever. It’s the most powerful film I’ve seen for some time and will leave you reeling (and needing therapy).

Hoping: That my friends Andrew* and Chief get donor lungs soon. They both have CF and  have had way too many false alarms which is cruel, disheartening and emotionally exhausting. IT’S A GOER FOR CHIEF ON THE SIXTH CALL UP! He’s doing *incredibly* well 🙂

Pondering: How amazing life is being clean. I never thought I could feel this happy. Seriously – have I EVER felt this way? Halcyon days 🙂

Marvelling: At how music makes me feel ALL THE THINGS.

Cringing: That my Jeep needs a new gearbox. Oh, the horror.

Needing: A capsule wardrobe.

Puzzled: That I don’t ever drink coffee in winter.

Questioning: Why so many crap writers get published. I guess mediocrity is on trend.

Smelling: Not much. Since having the flu, my sinuses have been blocked, but today my olfactory senses happily returned and oh! The smell of toast, freshly laundered sheets and chai simmering on the hob – glorious.

Following: My gut. And Marie Kondo. She’s rad.

Wearing: Mecca lip balm. I cannot get enough on my mouth.

Noticing: That I really need to clean my windows.

Knowing: My purpose.

Thinking: I have SO much to do.

Seeing: An overabundance of cranes across the city. All very phallic.

Believing: In fairies and the little people we can’t always see.

Admiring: Anyone who lives with a poo bag.

Believing: In karma. Because I have to.

Sorting: Through my possessions and giving a lot of stuff away. Liberating much?

Getting: Organised to launch a big community project that I can’t tell you about. It is super exciting and slightly terrifying knowing that a friend and I are putting ourselves on the line for what we feel is for the greater good.

Gathering: Resources and support for said project.

Cultivating: Kindness, candida (sexy, right? Thanks antibiotics!), and garden ideas.

Bookmarking: Where do I start? Psychedelics in dying, extreme knitting, cob houses and the small house movement, India, birds of prey & falconry, granny squares, aromatherapy, epigenetics.

Disliking: Where my neighbourhood is heading. Think big corporates moving in, mass gentrification and hideous high-rises that hopefully no one will want to buy. I foresee a glut.

Coveting: A spell that makes me write 10,000 words a day, knowing full well that no such thing exists. The only way is ass glue and a warm teapot within reach.

Opening: Bottles of kefir like they’re going out of fashion.

Giggling: At finding feathers at the most serendipitous of times. My mantra of ‘look up, look down’ has been serving me well.

Feeling: Ready to replant my garden with the help of Mum’s green thumbs.

Snacking: I wish it was medicinal liquorice, but it’s raw veggies with cottage cheese. Don’t knock it ’til you’ve tried it.

Helping: Shit stir the big developers who are trying to ruin my community and create change by lobbying, petitioning, opposing etc.

Hearing: Fleet Foxes and the noble chatter of crows.

Trying: To spend more time offline and in nature.

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(image from https://nostalgichobo.wordpress.com)

Thanks to Pip at Meet Me at Mikes for such a cool list 🙂

*Sadly Andy died a few months after I wrote this. He will be eternally missed.

Post-script on ‘The day I met my donor’

A little follow up from yesterday. I’ve had quite a few transplant recipients contact me about how they are now going search for their donor and I want to give them some words of wisdom from my perspective. Tracking down your donor is greatly frowned upon due to privacy laws in Australia. These laws are in place for very good reason in order to protect families who have given the ultimate altruistic gift. The ultimate altruistic and anonymous gift. It took me seventeen years to attempt to find my donor even though I’ve always been privy to very specific information that 99% of recipients DO NOT have.

Please heed the following – this is a door that can so easily be opened, but it’s one that cannot be closed. Again – I was privy to very specific information about my donor and their family, so please consider your donor, their family and their grief as well as your own mental well being before you pursue the unknown. Often people end up finding the wrong person. Sad, but true.

Many people assume that it’s ‘easy’; that they’d love to find out who the person is/was who gave them a second chance at life, but I can tell you it is no such thing and I’m only on day fucking two. It is NOT easy. While I feel that I’ve found a piece of myself, I also feel that yesterday has painted my transplant journey in a far darker hue than I could ever have imagined, and it’s one of immense sadness that will now weigh on me for the rest of my life.

Just remember that I’m at the very beginning of this new journey and it’s one that may still go belly up. Perhaps I’ve been reckless – or perhaps I’ve been reckless in sharing my discovery. Sometimes a door stays closed for good reason.

The day I met my donor

I never thought I’d do it. It’s been seventeen years, after all. And even if I did do it, I never believed it would be this hard.

Mum and I had talked for years about going into Births, Deaths and Marriages to see if we could find her, but today on my own, I went into a quiet room – so quiet the air had a tenderness about it – and scrolled slowly through a reel of microfilm until I found her.

Today I found my donor.

I have to say it again because it doesn’t feel real – I found my donor. 

I had always known the rudimentary details about her, but never her name or date of birth; her exact age or the the colour of her hair.

And now I know because today I ‘met’ her just for a little while. I even got to see a photograph and wow, is she exquisite. A brunette, with shades of red. I knew my donor was a brunette. Don’t ask me how – I just knew. She was married and we share the same initials when she still had her maiden name. She was twenty-two and we were born in the same year. Her name is unusual; I never would have guessed it. She was married. At twenty-two. And at twenty-two, she died.

Her funeral notice reads ‘tragically taken’. Because she was. She was taken from her family in the most tragic of circumstances in her apogee; her absolute prime.

But then she gave. Gave life to me and from what I understand, several other people.

I knew yesterday I was going to the library. Last night was, in spite or because of, the most restful sleep I’ve had in months.

This post is short because I’m crying rivers and trying to process something that is profound and so much bigger than me. The only trouble is that I’ve opened a door I’m not ready to close, but this shall do for today.

All I know is that she lives through me, and I through the wonder of her. Every breath honours you, C. I just hope that I have been enough, done enough, am enough.

The night I lived again: part three

There is beauty in the ordinary. Waking up, making coffee, washing my hair, going to the post office. All ordinary things made extra-ordinary because I am here to do them. I woke early to watch the moon sink and the sun rise. The east screamed tangerine and the sun pierced the thin veil of sky with a restless yearning – as if it needed to be seen by humans so it had proof of life. ‘I am here!’ it bellowed through the clouds.

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Not surprisingly, I was much the same when I woke up after my transplant. I was still intubated (on life support), and my first physical response was to try and pull out the hose tube that was down my throat. I remember Dad finding me a notebook and giving me a pen so that I could write, but all I could manage was scrawl and for a few seconds, I thought I was brain-damaged. But was I even alive? I could see Mum, Dad, my sister Nikki, my boyfriend Lachie and one of my best friends, Laura. Someone then found Dad an alphabet board, so I could point to the letters. The first letters I pointed at were –

‘A M  I  A L I V E’

Everyone laughed and nodded their heads, saying ‘yes, you’re here – you’ve made it.’ Then I pointed out the letters ‘I  L O V E  Y O U’ and I couldn’t tell if everyone was laughing or crying or both. All I wanted to know was if I was alive, so when I knew for certain, I started thrashing around on the bed because the tube down my throat was choking me. At least that was how it felt.

For the next three days, whenever the sedation wore off, I would thump around like a frightened yearling and try to pull the tube out. That was until a nurse rushed at me and pushed more sedation through the I.V in my neck. What surprised the doctors, was that I needed about five times more sedation than the average patient of my age and size. They worked out it was a combination of stubborn and a high tolerance for not only sedatives, but barbiturates, general anaesthesia. Here’s Mum watching over me. It saddens me to see the distress etched along her cheekbones and forehead. I often wonder how much this experience both eroded and strengthened her.

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My friend Sharon, who introduced me to Alicia (they were studying the same course at the Queensland College of Art), and my Mum are smiling here because they can see that my fingers are pink after having been cyanotic (blue) from the lack of oxygen in my blood for so long. The fact that Sharon would cry and faint at the sight of a needle and/or blood (I remember her screaming when we had to have our TB immunisation at school), she did incredibly well with all of the needles, tubes and machines. Sharon has since had three babies and can now deal with blood. I’m very proud of her evolution.

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This is what an end stage Cystic Fibrosis lung looks like. I always liken it to a dead bat.

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When I initially went on the transplant list, I was told that I would more than likely have a long wait because my lungs were so small, which meant that I might need the lungs of a child. This never sat well with me. It was like a stone in my belly. Knowing that I was essentially waiting for someone to die so that I may live was an already heavy burden, let alone knowing I may end up with the lungs of a child inside me who had not lived a long enough life, often made me feel physically ill.

Transplant can be is a mental and moral minefield. A girl I had grown up with could never reconcile the fact that she had another persons lungs inside of her, and she died a couple of years after her transplant full of that terror. During a transplant assessment to determine if you’re medically viable for transplant, among the barrage of tests is a psychiatric evaluation in order to ascertain if you’re stable enough to endure the possible mental rigours that go hand in hand with having such life-altering surgery. The transplant team has to know if you’re going to be compliant. Are you going to take your medication every day and at the right time? Are you going to look after yourself when you leave hospital? Do you have adequate familial and emotional support to cope post-surgery? If the patient has emphysema, will they start smoking again? Unfortunately the answer to the last question can be ‘yes’. I’ve known patients who have taken up smoking post-transplant, and I can only imagine how this makes the doctors and other medical professionals feel. Personally, I want to give them a high-five. In the face. With a SHOVEL. I want to repossess their lungs and give them to someone who deserves and respects them.

For me, having a transplant is a shared responsibility between my donor and I. It’s a shared duty of care. They’re not my lungs – they’re ours. I’ll say ‘my lungs’, but what I really mean is ‘mine and hers’.

And so, I was extubated (taken off life support and breathing on my own) after three days and I didn’t stop talking. For days.

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Mum, Dad, Laura, Lachie and Nikki were never far away.

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And neither was Sharon, my Blood/Sharps Princess Warrior 🙂

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Lachie would often leave me writhing in pain because he made me laugh so much. He was incredible.

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My first walk. I call this ‘The walk of life’.

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One of my favourite ICU nurses, Allan. He did a superb job of extubating me and he thought my post-transplant boobs were magnificent, so I love him extra hard for that.

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But like any journey worth writing about, it wasn’t all sunshine and rainbows. In the second week, I began to wheeze and it became steadily worse over a weekend. I was home on day pass and I bounded up the stairs where I did a Rocky victory jig (except that no one was watching). I let everyone know that I’d made it to the top of the stairs without dying, and I noticed I was wheezing.

‘I must have got an asthmatics lungs,’ I said, and everyone applauded my efforts and laughed at what I had said about my wheezy lungs.

Scott Bell, my lung transplant consultant, was sick that weekend, so another doctor – a heart transplant consultant (hearts –> chalk/lungs –> cheese) assumed that it was asthma and so prescribed me nebulised ventolin. The problem was that it wasn’t asthma and by Monday morning, I was critically ill with the worst rejection Scott had seen up until that point. I had essentially been misdiagnosed. Scott was not happy. You don’t get Scott unhappy.

I had bronchoscopy after bronchoscopy, was moved back into acute ICU for a day for observation and my morphine dose was increased about ten fold. Rejection was the worst pain I had been in since the epidural had been removed a week earlier. When the epidural was pulled, it was as though someone had poured fuel over my chest and set it alight. I’d never suffered – really suffered – with pain so fierce and searing before, and I’ve been unfortunate enough to have experienced it a couple of times since (once was after my cancer surgery in 2007). In my ‘Transplant Diary’, where Mum and Nikki wrote everything down every single day, Mum writes on the 31st August, ‘Carly is in extreme pain, like someone is sitting on her chest. She is having morphine.’

The other drug they increased was my prednisone (cortico-steroids). Massive doses of methyl-prednisolone pulsed through my body for three solid days, as well as other drugs you’d think would be better at stripping paint off the walls. My doctors were calling transplant units all over the world to try and save my life, and though we knew the rejection I had was serious, it wasn’t until six months later that Scott told me how close I came to dying. Even when I see Scott now around the hospital, he still shakes his head and says, ‘I’ll never forget that rejection. It really was an extraordinary time.’

There’s that word again. Extraordinary.

But I’m more than happy with ordinary. Ordinary means simple, and simple is beautiful in its truth and brevity. As I head out with my family today, I will look back to this ordinary day in all of its staggering and miraculous beauty and all of the blessings that come with that.