Category: Dad

Riding on elephants and other shit I haven’t done

Shot a gun ✔ I did my firearms safety training in January, and shot my first pest roo in a string bikini Be afraid. Very afraid.

Gone on a blind date ✔ Oh, the horror.

Skipped school ✔

Watched someone give birth ✔✔ My eldest and youngest nephews, now 14 and 9 respectively. It was an absolute honour.

Watched someone die ✔✔✔✔ I think I’ve got this one covered.

Visited Canada ✔ It was lovely. I spent most of it inebriated, writing by a fire, and sledding with huskies.

Visited Hawaii ✔ Does the airport count?

Visited Europe

Visited Las Vegas ⊗ I couldn’t think of anywhere worse.

Visited Asia  India is in my future!

Visited Africa ⊗ I’ve long had visions of dancing on a beach in Zanzibar in a string bikini drinking sangria. Seriously. Except I don’t drink – make the requisite sangria an iced tea, thanks.

Visited Egypt

Seen the Grand Canyon in person 

Flown in a helicopter 

Served on a jury 

(as a point of reference, my mother has done all three ^^)

Cried yourself to sleep ✔✔✔✔✔✔✔

Recently coloured with pencils ✔ I didn’t colour as a child – I read and wrote. Taking the time to colour within the lines is fun, yet meditative gives me fucking anxiety. Not joking.

Sang karaoke ✔ 
With gusto. With my native lungs, I was in tune. Not so much after my transplant.

Paid for a meal with coins only ✔

Made prank phone calls ✔ Hey, I was young …

Been honoured with fireworks ✔ Yes! I was born on New Year’s Eve, so for my 21st I had a huge party because I’d survived twenty-one years with CF. My folks organised the crew who do the Brisbane city fireworks to stop at our place (we were living on the Brissie River) around 9.30pm. They left a whole lot for my Dad and our neighbour to detonate at midnight, and being absolutely hammered, they nearly blew themselves up (that alone was worth seeing – two old blokes jumping around like frogs was fucking hilarious). It was epic and I found out afterwards that people saw them all across the city.

Laughed so much you cried ✔✔✔✔

Caught a snowflake on your tongue ✔

Had children  I found out when I was 16 that I couldn’t have children (severe endometriosis, cystic fibrosis and eventual vulva cancer), so I’ve never had a big ‘oh, fuck I can’t have babies’ moment. It’s just something that’s never been on the table, which doesn’t mean I’ve never been sad about it. My ovaries explode like an atom bomb, and I melt when nursing a baby. Just quietly, I would have been a fucking rad mum. Exhausted, but rad.

Executed successful skinny-dipping *and* nudie runs ✔✔✔✔✔✔✔✔✔✔ Yep. I’ve got those covered, too. In fact, I very nearly got arrested with my bestie’s husband doing a nudie run on a beach.

Abseiled down a building  Would LOVE to. Heights and speed are my thing.

Been camping in a tent ✔

Driven a motorcycle ✔ ⊗ Does being on the back of one count?

Been bungee-jumping  I went sky diving instead. I’ll jump out of a plane, but won’t tie a cord to my legs and then jump. Nup. Not a chance in HELL.

Gone to a drive-in MOVIE ✔ The last time was to see ‘Herbie Goes Bananas’. I would have been around four and remember a human sized banana dancing out the front as we drove in. I was wearing my pyjamas, too.

Done something that could have killed you ✔ Let me count the ways … drugs, for one. I am still genuinely shocked that I am not dead.

Done something that you will regret for the rest of your life  No regrets, just lessons.

Rode an elephant  I don’t know if I could because I love elephants SO hard.

Rode a camel 

Eaten just biscuits, cake or ice cream for dinner ✔ Is this some sort of trick question?

Been on TV ✔ Quite a lot as a kid with the whole CF thing.

Been in a newspaper ✔ Again, quite a lot as a kid and as an adult with CF, transplant, my poetry, and now my deathie work.

Stolen any traffic signs  I suddenly feel cheated. And now I can’t afford to get a conviction because I work for the government.

Been in a car crash ✔✔
 Both were minor, but here’s the kicker – the second was with an unmarked police car the day I found out I had to have a transplant. Top day that was …

Stayed in hospital ✔✔✔✔ WHERE DO I EVEN START WITH THIS.

Donated blood  I can’t because of all the mad medication I’m on for transplant. I so wish I could.

Had to pay a fine in the past 12 months ✔ Fuck you, Brisbane Shitty Council. Better signage would go a long way.

Gotten a piercing ✔ My nose when I was 19, not long after I got my first tattoo.
 Hey, I was in Byron Bay.

Gotten a Tattoo ✔ ✔ I’ve never felt regretsy about either of them.

Ever driven an automatic car ✔ Yep, but I’m a manual maven. Real chicks drive sticks, or something.

Ever owned your dream car ✔

Been Married 

Been divorced  I feel as though I have …
 See also.

Fell in love ✔ Oh my giddy aunt. Madly, passionately and all consuming love? Oh, yes.

Fell out of love ✔ It was awful, for both of us. The guilt was almost insurmountable.

Paid for a stranger’s meal ⊗ I can’t believe I’ve never done this #2016goals

Driven over 100kph ✔ If there’s anyone who has access to a track, I can bring a ’71 E-Type to the table. And yes, it’s a V12.

Worked in a pub ⊗ I’m guessing drinking one out of whiskey and being *asked to leave* doesn’t count?

Been scuba diving  I’m claustrophobic. But I’ve snorkeled in Vanuatu and I loved it because I could, you know, GET UP FOR AIR. Scuba diving would terrify me.

Walked on burning coals  I have no desire to have skin grafts on my feet. I’ve already had them taken from my inner thigh when I had my cuntostomy, so NO.

Eaten snails  Clearly, I haven’t lived.

Swam with dolphins ⊗ ⊗ ⊗  ACHTUNG and fuck to the NO. It’s called animal cruelty, unless they swim up to you in the wild. Go and watch Blackfish.

Swam with sharks  See above.

Lived on your own ✔ Yes. It’s called HEAVEN.

Performed on a stage ✔ I used to. All. The. Fucking. Time. I miss it. I mourn it.

Eight years in remission – viva la vulva!

I never thought I would see another eight years. Really, I didn’t. After my cancer surgery in 2007, my oncologist was certain that more cancer would grow, that the surgery I had wouldn’t hold, and that I’d die. Thankfully that hasn’t happened, and today marks eight years since I underwent the surgery to save my life. The icing on the proverbial cake is that I’ve had no more cancer in my vulva (there’s that word again!). Viva la vulva, I say.

I find it quite incredible that in my immuno-compromised body, that I am still alive. And you know what? After what I went through with that surgery, I can hold my head high and say that I deserve it. If I never have to have life saving surgery ever again, it won’t be too soon.

Below are a couple of photos – the first being just before I started throwing massive seizures and went into a coma. Now, don’t I look fucking miserable here? Well, of course I was. I had a broken vagina which is enough to sink any woman. As well as my broken bits, I had skin grafts that possibly wouldn’t take, and a poo bag that had the tendency to explode several times a day. I clearly have a bowel obstruction in this photo – something that wasn’t picked up until too late – and by the next day, my family didn’t know if I was going to die or live out the rest of my days in a nursing home.

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As always, my sister was with me. Here she is standing over me in ICU, and just like when I had my transplant, my family played my favourite music, but even on the suggestion of my friend Kate, not even Axl Rose could rouse me out of this fix. Music seemed to be the only thing that would soothe me after both surgeries, especially during the long nights where everything seemed to go wrong. Think collapsed lungs, bleeding, broken beds (and not in a fun way), and uncontrollable pain. I am so grateful for the kindness of the nurses on the broken vagina ward.

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So what am I going to do to celebrate today? I’m going to embrace the ordinariness of life and start my Christmas baking. I did two practice runs last weekend with my very first fruitcakes and they were a hit. I ate the last slice last night with a cup of sweet, milky tea, but to tell you the truth, I gave most of it away to my folks. My old man is quite the human garbage disposal, and that’s where I get my deadly sweet tooth from. Today I’ll get all of my dried and glacé fruit and soak it in rum for the next month, then I’ll bake the cakes and ‘feed’ them with rum until my family can enjoy a slice or three on Christmas day with the requisite custard.

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I’ve never been much of a baker or decorator, so I was thrilled with how these turned out.

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And so that is how I will celebrate today. Eight years of so many experiences that have shaped me – and I suppose ‘baked’ me to a degree. And that’s ok, otherwise I wouldn’t be at this point in my life. I can honestly say that the view from here is fucking spectacular, thanks to my family, friends, doctors and of course, the choices I’ve made to get me here. Viva la vulva!

The night I lived again: part two

By the time it was definite that the donor lungs were a match, there would have been at least thirty-five people at the hospital – all friends and family. Even a friend’s boyfriend (now husband) had driven down from uni at Gatton, so he could be there for both me, his now wife and my other friends (love you, Davey!)

My boyfriend at the time, bless, had arrived at the Prince Charles drunk. With flowers and chocolates which I couldn’t eat. I think they became someone’s breakfast. He had been having a night in with the boys at his place, and they all very quickly sobered up when I arrived by ambulance. In fact, most people had beaten ME to the hospital. My Dad ran about three red lights and my best friend ran at least one.

I was taken up to the respiratory ward and we waited in the day room for a couple of hours before I was put in the wards only private room. The only problem was, with the amount of people I had with me, there was a fair bit of noise and it was now around 1.30am. We kept on getting in trouble from one particular nurse who reminded me of Maggie Kirkpatrick’s character on ‘Prisoner’. Or Nurse Ratched. She could get as angry as she wanted, because I soon discovered that she was going on six weeks of leave when she left handover that morning.

Carly: 1

Nurse Ratched: 0

You do silly things when you’re about to die like putting vomit bowls on your head.

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I got to say my goodbyes to each of my friends, one by one, and it was excruciating, both physically and emotionally. My friends held me so close – I remember my friend Tammy especially – and the pain was almost unbearable, but I wanted to do it. Parents of friends who lived in Melbourne brought up prayers and messages for me, and while I was grateful, I was too sick to give any sort of response, except for ‘thank you’.

I was told to ‘have a sleep’, but I wanted to spend as much time with my family, my partner and my friends as possible. And so, around 8am on the 22nd August, I was taken to theatre. The distress is so palpable on my sisters face, you can almost touch it.

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If there is a photograph to capture my most life defining moment, this has to be it – saying goodbye to my sister. So many goodbyes that morning.

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I hugged my parents and my sister, kissed Lachie goodbye and was wheeled away.

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All night and all morning I had been at peace. I wasn’t particularly worried and at one point, I’d had to tell everyone else to calm down. But when the orderlies began moving my bed in the opposite direction of my family and friends, I lost it. Up until then, I hadn’t been too worried – a possible combination of morphine and the desperate yearning to have my old lungs taken out of my decaying body. I wanted the next moment more than the last, and while my body couldn’t fight for it, my mind could. But then my brain broke. Split open like over ripe fruit.

I don’t know where the sound came from, but as I was being spirited away, I looked at the people gathered behind me and I wailed. My body was wracked with sobs because I had finally realised that I may never see any of these people again. I could die on the table (that’s another story) or I could make it through the surgery, get out of theatre and into recovery, only to die.

My friends subsisted on chocolate, cigarettes and a carload of Maccas when I was sleeping. Cigarettes. The irony has never been lost on me. Inside the O.R was (as all O.R’s are), subarctic. I was covered in foil to maintain body temperature and given warm blankets as I lay there waiting to go to sleep. I had beautiful conversations with doctors and the nurses and they were able to get me into a state of repose where I even asked the surgeon if I could have a couple of 500ml bags of saline popped into my chest

The Propofol leaked through an intravenous line in my chest, and I happily surrendered to the milky white liquid like a little death. My last words? ‘Save me, for I am the Sex Goddess.’ ‘Sex goddess’ had followed me through high school as a nickname, except I didn’t have sex until after I’d left school. But ‘sex goddess’ it was. The theatre big me a collective ‘good night’ and ‘of course you are’.

Here are a few of Alicia’s brilliant photographs while I was having my transplant. I would encourage you to click on these photos so you can see the more minute details. Below, the surgeons are suturing up my clamshell cut after six hours of surgery. Little did they know that they’d have to rip their delicate embroidery apart when I had to be taken back to theatre because I was bleeding.

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Surgery

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In recovery. Alicia snapped at the *exact* moment my anaesthetist realised I was bleeding internally, so it was back to theatre to resolve some ‘plumbing’ issues. It pulls on my heart when I see the nurse holding my hand. It’s the little things that for me, mean so much, and I know my family would have appreciated the comfort she was giving me, even though I was in a coma. It’s the whole ‘show, don’t tell’ mantra that writers use, or ‘demonstrate, don’t state.’ And in this gentle gesture, this is exactly what she was doing.

And so this time seventeen years ago, I was dying. I am just a few hours away from getting ‘the call’. I get a little introspective on Transplant Eve, but tonight I’m writing. Fitting  seeing as how writing has played such a big role in my survival. I’m having a quiet celebration with my folks tomorrow where we will toast my donor and her family. We will toast my heroes; so many peoples heroes.

Part three of my transplant journey will be with you sometime tomorrow.

My night without armour

May-August 1998

I was in the dying room. You know the one. It’s quiet. People slip in and out as though they were never there. Festering in a bed for three months, I had grown tired. My arms were the shape of soft baguettes, peppered with freckles like sesame seeds. Lips, a permanent shade of blue. Colourless fingers and toes – lily matchsticks, sans red ends. My hair had been falling out and I had forgotten how to use my legs. Twenty-one not out. For every year, I had lived four. I was a pale vintage just short of eighty-five. But I was sick.

Sick of white sheets. Sick of fluorescent lights. Sick of ward vagrants hobbling into my room, bottles full of piss hanging from petechia stained fingers, begging for my help; their gowns askew showing either flat and wrinkly bottoms or saggy, hairless balls.

Friday 21 August, 1998 8pm.

I watched Burke’s Backyard and said goodbye to my family for the night. Said hello to a morphine bolus. Like a little death itself, that pause from pain. I would feel every drop spread through each cell of my body; like someone had cast a hot blanket over me. It would anchor me to the bed, carving out a grave in the hollow of my mattress. Interweave me, you two thick threads, I would whisper; one flame licking the other in need of a partner. Show me mercy.

Saturday 22 August 1998. Midnight, or just after.

In rushes Daisy, my midnight oriental muse. She injects drugs into my chest to buy me another day’s grace so that one life may be taken and given to another.

Tonight it was to be my turn. Eight months and twenty-two days I had waited for the beeper to beep. But instead of its rapid fire chirp, it was a phone call, shrill and cutting. Fuckfuckfuckfuckfuck. I hang up the phone and nurses keen in and carry me into the toilet where I piss blood for the last time.

With my possessions gathered – my Auden and my Heaney, my copper bookmark and a sputum cup – the room looks like I have never been there. Flowers on my bedside table hold me to ransom – the colours having taken on a death hue. I winch my wasted legs into a pair of jeans, my flat bum loathe to fill the denim mould. Daisy finds me a shirt that disguises my barrelled chest, breasts having shrivelled long ago, but ready to be full again. I try to wedge my blue feet into my stinking blue converse while another nurse succours me with another jab of morphine.

The ambulance sits in one of the emergency bays like a glorified hearse waiting to transport the living dead. But what of the person whose lungs were going to be settled into my body tonight? Was it a man or a woman? How did they die? Was it a car crash? It couldn’t be. The lungs and heart get squashed like soft fruit between over eager fingers. Could it have been a brain bleed? How old were they? What of their family? What of their children? I wonder if it was a woman. Who would she want me to be? One woman dies for another – I didn’t want to disappoint. Responsibilities weigh on my wilted head, soon to be fat from steroids.

My mind peels off, focusing on the next breath. Anything of consequence, outside that esky with my or her or his lungs in it, worsted with each breath and I think ‘I don’t know how to be with this’. What I did know what that there were going to be chains pulling my ribcage apart. Pulling my ribcage apart so my sternum could break. Breaking my sternum so surgeons could push past muscle, sinew, bone, veins and nerves to get to my lungs – those blackened masses like giant mussels having sat in stagnant water; lips covered in downy fur, shell white and slimy, but like bedrock where no knife could pierce. My empty treasure chest. I likened the surgeons cutting through a dense back wood to find a decomposing body. They were going to uproot the trees poisoning the forest. Make the forest clean again.

Wet roads prompted thoughts of car crashes. Absurd conversations about public holidays and the road toll had been a primitive form of optimism. Easter was a pensive time. Then we’re told that hearts and lungs are squashed on impact. I would feel self-disgust mixed with equal parts of hope, but you learn to live lighter when you’ve been dying for nearly nine months, and friend after friend has breathed their last waiting for their second chance that never came.

The night I coughed up a cup of blood, my father said he’d find a triathlete and hire a hit man to save me. Is it selfish to hinge onto the notion that someone must die so that I can cease to exist and begin to live?

I sit up in the ambulance and spit out what looks like a brown slug, flecked with red. The cup is soon flooded with molasses – fatter and far blacker than any leech – and I rattle like a bag of marbles.

One-thirty am.

My red and white hearse clogs two emergency bays while the rain swathing the city has has evaporated. The sky is smudged with patchy clouds and the moon hangs with its silent lull, while winds fat with caution slap my cheeks; the warp and weft intangible in their bearing. Squalls skirling down from the ranges sprint off lands edge and the thumping blades of a helicopter unnerve me and I turn on myself; questioning whether my new lungs were being hauled across sticky linoleum in a store bought esky.

I’m then hankering for food. Hadn’t eaten a solid meal in six months, but I’m hungry. My boyfriend had dropped in at a late night store to buy me flowers and chocolate that I couldn’t eat. How I loved him.

People stood on the kerb – drunk boys and grieving girls. Grieving for what was, what may be, what may not come to pass.

Father chain smoking. Sister crying. Nuns praying. Mother’s hands wringing. Friends mouths twisted into concern. Thirty-six of them lashed together; spine against spine.

I’m taken up to the ward to an onslaught of questions and a nurse Ratchet type who tells us to be quiet – ‘other patients are sleeping’. She makes us feel like impish school kids until Chelse spits back, ‘she’s only having a fucking transplant.’ My doctor sits next to me, his hair and glasses askew. Dog tired and skittish, he tells me that ‘it’s not going to be easy’. The heck I cared. Just cut me open and do your dirty work.

Eight-thirty am.

Thick knots of shit slink down my middle. Dead skinks, their tails unmoving in soft peaks as slow, thick cramps cling to my bowel. A bowel collapse would make me feel less of a stranger. Instead, I am in the bowels of the hospital. Visions of dancing and having sex without a tank of oxygen suffuse my thoughts, then the rusted cogs begin to shift. Slowly at first, then faster and faster, and time starts to slip until I am all death throes and thoughts of ‘my-god-what-if-die-on-the-table?’

The sun had climbed out of the shadows of rain. A cloth cap is placed on my head and I am wheeled away to my very own green mile. The payload of valium dissolved, I look to see the congregation of thirty odd. The thirty odd I might never see again. What of my mother, my father, my sister, my partner? What would I do? I’d be dead. Shame it be that way.

Screams echoed through the halls and I didn’t know how or care where the breath was coming from to fuel them. My mother would later tell me she didn’t know how I made such a noise, but we wagered that it was my death cry.

I didn’t want to lay down in the room with lights as big as satellite dishes, because I was afraid that once my body was supine, I would die. The room was checkered with strangers in masks and gowns and after some soft words, the collective theatre voice bade me good night.

‘Save me, for I am the Sex Goddess’, I retorted. A nurse stroked my face and said, ‘yes, yes you are.’

I surrendered myself to the milk in the syringe; lily white, liquid purity. The kind of death reserved for prisoners on death row who would never wake. The anaesthetic was such a flooding wave of orgasmic joy, it was almost agony.

My armour is cut open so hands and tools can busy and bury themselves in my torso. My breasts are peeled up to my neck, and I am literally off my tits. In the photos I see four days later, I notice that breast tissue looks not dissimilar to a cerebrum – just more finely textured; the patterns more intricate.

While scalpels excavate masses of scar tissue and bloody holes are packed with gauze, I sleep. My ‘native’ lungs – like dead, shrivelled bats – are dumped into a plastic bucket, then surgeons ease in the donor lungs one by one. They stitch and wire them into my chest whereupon they are met with oxygen and inflate in a great rush of life.

My chest is candle wicked with such care; sewn up with silken loops only to be released with the flick of a blade and the pull of a string, for my lungs were swimming with blood and needed to be plumbed. After a couple of hours, the clam-shaped hole resembled a scar once again – my armour back on.

Sunday 23 August, 1998. 9.30am.

I open my eyes to tubes and lines down my throat, up my nose, in my chest, up my vagina and in my neck. A machine breathes for me and would for the next three days. My chest is raw and puckered, and four tubes the size of garden hoses stick out of my chest at even angles like badges on a soldier’s lapel.

I was going lose my breath, I was going to lose my dignity and I was going to lose my cheekbones. But I was coming away with my life – armour on, sheltering my fall.

Learning to Die: my TEDx talk

Yesterday my TEDx talk went live on TEDx Brisbane’s YouTube channel, and I’ve had an almost overwhelming response about speaking about my life (and deaths), and my beliefs and truths about death and dying. Here it is – Learning to Die.

I’ve been bathing in the beautiful waters of Death Walking training over the last two days, the last of which is today, and being able to come together with other ‘deathies’ has been such a gift; so serendipitous in its timing. When I looked at my phone at morning tea, I couldn’t understand why I had a flurry of messages, though it soon registered when friends and strangers alike were reaching out to congratulate me. Mission accomplished! And so here it is. It’s been released to the the world, and it’s there for people to do with it as they wish.

So make yourself a cuppa or an espresso or whatever your poison is and sit down to hear what I have to say. And please – let me know what you think. Comment, share, repost. I’m feeling happy and grateful that my words can be heard should you so desire to listen, and if just one person walks away – or leaves their desk or kitchen table – a little more fluent in the language of death, then my work here is done. Peace.

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 and watched 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  human eyes 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 following my transplant surgery. 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 anaesthetics and opiates. 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.

ASLEEP

 

 

 

 

 

 

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 religiously? 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 for 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 …

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My first walk with Mum in tow. Always with me.

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My favourite ICU nurse, Allan. He did a superb job of extubating me, so I love him extra hard.

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But like any journey worth writing about, it wasn’t all beer and skittles/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 clapped at 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 an afternoon for observation and my morphine dose was increased. Rejection was the worst pain I had been in since the epidural had been removed a week earlier. When the epidural was pulled, someone may as well have 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 only experienced it once since and that was after my cancer surgery in 2007. In my ‘Transplant Diary’, where Mum and Nikki wrote everything down every 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. After I spent some time with my folks and two of my closest friends, I stopped at a shop which has everything that I love – coloured wooden blocks, cotton socks, porcelain birds and winsome stationery – and I bought a teapot and the matching cups that I’ve been looking at for a while. It brews a lovely cuppa, and every time I pour from the pot and drink from the cups, I’ll think back to this ordinary day in all of its staggering and miraculous beauty and all of its blessings.

Without my family and friends, I am nothing. I am a body with a stagnant soul  

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I’m *very* spoilt …

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YES 

 

 

 

Here’s to our shared good health 

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The night I lived again: part two

By the time it was definite that the donor lungs were a match, there would have been at least 35 people at the hospital – all friends and family. Even a friend’s boyfriend (now husband) had driven down from uni at Gatton, so he could be there for both me, his now wife and my other friends (love you, Davey!!)

My boyfriend at the time, bless, had arrived at the Prince Charles drunk. With flowers and chocolates. Which I couldn’t eat. I think they became someone’s breakfast. He had been having a night in with the boys at his place, and they all very quickly sobered up when I arrived by ambulance. In fact, most people had beaten ME to the hospital. My Dad ran about three red lights and my best friend ran at least one (what a way to become an organ donor …)

I was taken up to the respiratory ward and we waited in the day room for a couple of hours before I was put in the wards only private room. The only problem was, with the amount of people I had with me, there was a fair bit of noise and it was now around 1.30am. We kept on getting in trouble from one particular nurse who reminded me of Maggie Kirkpatrick’s character on ‘Prisoner’. She could get as angry as she wanted, because I soon discovered that she was going on six weeks of leave when she left handover that morning.

Carly: 1

Grumpy nurse: 0

You do silly things when you’re about to die. You put bowls that are used for vomit on your head.

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I got to say my goodbyes to each of my friends, one by one, and it was excruciating, both physically and emotionally. My friends held me so close – I remember my friend Tammy especially – and the pain was almost unbearable, but I wanted to do it. Parents of friends who lived in Melbourne brought up prayers and messages for me, and while I was grateful, I was too sick to give any sort of response, except for ‘thank you’.

I was told to ‘have a sleep’, but I wanted to spend as much time with my family, my partner and my friends as possible. And so, around 8am on the 22nd August, I was taken to theatre. This distress is so palpable on my sisters face, you can almost touch it.

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If there is a photograph to capture my most life defining moment, this has to be it – saying goodbye to my sister. So many goodbyes that morning.

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I hugged my parents and my sister, kissed Lachie goodbye and was wheeled away.

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All night and all morning I had been at peace. I wasn’t particularly worried and at one point, I’d had to tell everyone else to calm down. But when the orderlies began moving my bed in the opposite direction of my family and friends, I lost it. Up until then, I hadn’t been too worried – a possible combination of morphine and the desperate yearning to have my old lungs taken out of my decaying body. I wanted the next moment more than the last, and while my body couldn’t fight for it, my mind could. But then my brain broke. Split open like over ripe fruit.

I don’t know where the sound came from, but as I was being spirited away, I looked at the people gathered behind me and I wailed. My body was wracked with sobbing, because I had finally realised that I may never see any of these people again. I could die on the table (that’s another story) or I could make it through the surgery, get out of theatre and into recovery, only to die.

My friends subsisted on chocolate, cigarettes and a carload of Maccas when I was sleeping. Cigarettes. The irony has never been lost on me. Inside the O.R was (as all O.R’s are), subarctic. I was covered in foil to maintain body temperature and given warm blankets as I lay there waiting to go to sleep. I had beautiful conversations with doctors and the nurses and they were able to get me into a state of repose where I even asked the surgeon if I could have a couple of 500ml bags of saline popped into my chest

The Propofol was slowly leaked through an intravenous line in my chest, and I happily surrendered to the milky white liquid like a little death. My last words? ‘Save me, for I am the Sex Goddess.’ ‘Sex goddess’ had followed me through high school as a nickname, except though I didn’t have sex until after I’d left school. But ‘sex goddess’ it was.

Here are a few of Alicia’s brilliant photographs while I was having my transplant.

Here, the surgeons are suturing up my clamshell cut after six hours of surgery. Little did they know that they’d have to rip their beautiful embroidery apart when I had to be taken back to theatre for bleeding.
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(I would encourage you to click on these photos so you can see the more minute details)

In recovery. Alicia snapped at the *exact* moment this doctor realised I was bleeding internally, so it was back to theatre to resolve some ‘plumbing’ issues. It pulls on my heart when I see the nurse holding my hand. It’s the little things that for me, mean so much, and I know my family would have appreciated the comfort she was giving me, even though I was in a coma. It’s the whole ‘show, don’t tell’ mantra that writers use, or ‘demonstrate, don’t state.’ And in this gentle gesture, this is exactly what she is doing.

And so this time fifteen years ago, I was dying. I’m two hours away from getting ‘the call’. I get a little introspective on Transplant Eve, but it’s time to head to bed. I’m having a quiet celebration with some friends and family at one of my favourite cafes tomorrow, and on Saturday night, we’ll head out to toast my donor and her family.

Part three of my transplant journey will be with you sometime tomorrow …