Tag: cystic fibrosis

No, it’s not chemotherapy, but …

… it’s crushing exhaustion, aching bones, rigours, a barely there appetite, heart palpitations, diarrhoea, nausea, seizing muscles and I can’t seem to get enough sleep. Most mornings it’s a struggle to even sit up in bed, mix my antibiotics and push them through my CV line.

‘Antibiotics?’ I hear you say. Yes – antibiotics. Whenever I get a lung infection and have to have a very obvious CV line indelicately threaded into my jugular and stitched onto my neck, people look at me and assume the worst. I’ve heard people whisper, ‘oh, she must be on chemo,’ or ‘She must be on chemo where she doesn’t lose her hair – how wonderful’, ‘I wonder how long she’s had cancer for?’ and worst of all, ‘I wonder how long she has left?’

For the record, I don’t have cancer – not this year, anyway. But when people find out that I’m on an antibiotic regime and not chemotherapy, they immediately express their relief and tell me that they’re glad it’s ‘nothing too serious’. I guess it’s not ‘too serious’ until the antibiotics stop working and I die.

Right now, I’m on three antibiotics: Meropenem, Cephalothin and Tobramycin. Twice a week I have blood tests done to see if my Tobramycin level is too high, and for the last week, it has been. High Tobra levels can send me into kidney and liver failure and affect my hearing to the point of going permanently deaf. Before my transplant, my levels were so high, I was falling over from vertigo, headaches and tinnitus. That’s not before the nausea, diarrhoea and rashes. And that’s just one antibiotic.

Tobrymycin has left me a shell of who I was seven days ago. I’m barely getting around the house and the need to throw up is never far away. I can’t go shopping because this lethargy has me on such a short leash, and I’m afraid of shitting myself in public, so I had my groceries delivered last night. I was too tired to put them away. Again – Tobra is just one antibiotic.

Meropenem and Cephalothin can also send me into renal failure and I’ve had consistent nausea and diarrhoea. For the first four days of IV’s – and even now – I couldn’t do a solid shit, was dosed up on fentanyl for pleurisy and had violent sweats and the vomits. But hey … it’s not chemo, is it?

Bottles, bottles everywhere and not a drop to drink …

So as I wrote in my last post, I’ve been a little unwell, but I’m home. And home is where the cider is … I mean HEART! But you know … priorities.

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I had a celebratory sip of cider (I will not be drinking during IV treatment, even though I used to infuse my antibiotics when I was out in the Valley and absolutely munted – pre-transplant, obviously)

I’m on a reasonably punishing antibiotic regime – eight IV’s a day, and within these marvellous little bottles called Baxter packs/bottles (it really is just like a babies bottle, or ‘bo-bok’ as my nephew used to call them when he was a wee bub), this infusion is a slow release antibiotic and I just change the bottle every 24 hours. It’s because of these bottles that I get to do my three IV antibiotics at home (one ‘push’ with a 20ml syringe over 10-15 minutes, another once a day with the IMED machine pictured above with the cider as well as  the bo-boks). So basically, I’m in a relationship with my bo-boks. I love them. I can go to brekkie with a friend tomorrow morning because they exist (I might share some – she’s not well, either) where we could do this …

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Or I could put my ‘this is serious shit’ face on and have a coffee instead …

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I want to thank everyone for their well wishes. They always make me laugh and feel better and now I can laugh and not be in pain because my lungs aren’t rubbing together anymore. Pleurisy, eh? What a nasty whore she is.

A late thank you

A late thank you

For L.S

 

You were an exercise in patience – not just at first,

but just before I was supposed to die.

You were there when the back beat faded;

when you saw that lash of fear drop into my back bones, my breathing bones.

 

Blisters pimpled my tongue, body acidic from dying.

Roped heavy; tied to a bollard, brown water lapping at my lungs –

you set me free for a while until I could be born again.

Your father fugued out because I was destined to expire.

Said ‘go with it, but be prepared to bleed.’

I understood, but with a disproportionate papal fury, so I stole you away

and your mother offered me champagne and strawberries.

 

We danced and fought and kissed and I slapped you. Everyone saw.

They saw our mouths and bodies smash and shiver,

they saw how I lost myself to you and your perfect teeth.

It was a place where no one else could come –

a place we would break each other, then stitch each other up

only to split more at the seams.

When we fell apart again, you were the only pill I could swallow.

 

You wanted the next minute more than the last as I faded in fluorescent light.

But before that, we abandoned any pretence, yielding to every mania because we were

twenty-one and just out of the nest.

KFC picnics in Pinkenba where we could scream at the ships

then lay down in the grass and scream for each other until my lungs

took on a death rattle that would become so familiar.

 

I would cough and you would grow harder inside me.

But this was the beginning, and we were wet thighed,

red-lipped surrender, slapped faces, dancing hips, lollies, pot,

fast food, late nights in alleyways, later mornings and threads of blood.

 

At the end, days turned to nights, going nowhere as my light faded –

the darkest point always before dawn; still as a domino before it tumbles.

 

Your hands were on my breast, my heart was in your teeth and I couldn’t

sing you under as pain climbed the ladder of my spine, bone by bone.

Late nights in my single room stopped, but you kept me breathing –

muscles turning to mush; hip bones cast into the air like a mast.

 

We would lay my body in bed as one would with anatomically correct bones.

 

I stopped walking, so you carried me,

putting me to bed on midnight jaunts to my hospital room.

I remember you walking from the city to South Brisbane with my favourite food.

Just for me. And I loved you because we were boxfuls of faith and fear.

 

I would cough until ribs split like cheap matches against cordite,

my gums and teeth all bloodied, lips periwinkle blue, arms blackened from the punctures

that would always miss the vein. Hit and miss and miss again.

 

arteries blow and veins don’t grow

 

You were there when I woke from my little death.

You held me in your hands when I was flushed of face –

my cheeks full of breath and fluid,

wearing in these lungs now awakened and in me –

lungs I always thought I had thieved until now.

My lungs bleeding her blood; her lungs bleeding mine.

And to think I’m not sure if I ever thanked you.

Vipassana

No books, no writing materials, no music, no jewellery, no computers, no phones, no religious objects (rosaries, crystals, mala’s, talismans etc.); simple, modest and comfortable clothing – no sleeveless shirts, tight-fitting clothing or anything above the knee. No eating after midday. No talking – only noble silence.

The five precepts for vipassana are:

  1. to abstain from killing any being (cue insect repellent)
  2. to abstain from stealing (stealing what? Food? Someone else’s insect repellant?)
  3. to abstain from all sexual activity (this should be a cinch)
  4. to abstain from telling lies (well, we can’t talk, can we? But we can still lie to ourselves, and that’s just silly and pointless)
  5. to abstain from all intoxicants (apart from some emergency pain relief, this one’s easy because I rarely drink alcohol and never take drugs I’m not prescribed to take. Speaking of which – I have SO much medication to take with me. Ten days can be a long time in the life of a C.F’er and transplant recipient)

And so for the next ten days I will sit (literally) in silence and mindfulness with my suffering. As much as I’m ready, I’m quite terrified and don’t think you can ever prepare for ten days of silent meditation. I’m feeling calmer than I was this morning. For some reason – and there is a reason – some things just went wrong this morning, but the day has panned out splendidly.

As for the next ten days, I can feel a shift already. It’s going to be messy, beautiful, bloody hard work (physically and mentally) and every soul in the room is going to go to some dark places, and come out the other side with peace and purity. That is the hope, although I’ll have to hand over my expectations when I walk through the door.

It’s time to get out of the city and into my head. Naaaaaaamaste!!!!!!!

Ed

When I was growing up, friends would go into hospital and never come out. Most times, there was ample warning – their dying process had begun and I knew they would not be going home.

But this was all before lung transplants.

Over the last year, I’ve learnt to expect the unexpected and that the unexpected always stings that little bit more than if you know what lies ahead.

Last week, my friend Edward – Ed, Eduardo, Mister Ed, Eddie, McEd – did not come home from hospital. I’m a big believer in second chances – and even thirds. Ed had two double lung transplants in very quick succession. He was a warrior who had a deep love for Gob Bluth from the T.V show Arrested Development and the song ‘The Final Countdown’. He believed in coffee – in the best coffee – and he could cook gourmet dishes (usually with seafood) at the drop of a hat.

Did I mention that he was a boy wonder/genius/wizard? A real Young Einstein. So smart and witty and too damn clever. Too intelligent, evolved and beautiful to die.

And so I saluted Ed on Thursday after I learned of his death. I brewed a ristretto, put on ‘The Final Countdown’ and saluted my friend, who for a time, had not wanted a second transplant.

I am so glad he changed his mind with the help of one of my oldest and dearest friends. Ed did a tonne of amazing and bold things in the far too fleeting time after his second transplant. But by far the most important – the most sacred – was that he fell in love.

I spent Wednesday afternoon watching Arrested Development – laughing, crying, cursing and howling – as I thought back to when we walked the Bridge to Brisbane under the guise of ‘Team Ed’, just eight weeks after his third chance at life. Walking up the bridge, we decided that if and when we were to do this again, we would hire Segways, a la Gob Bluth.

Team Ed will be reassembled next year. There will be tears and there will be Segways and Nerf guns.

I know to expect the unexpected, but this? Ed’s death is like a switch blade to my heart and the hearts of so many others, because he went into hospital to get better – not to die.

Memoir sneak peek

Here is a glimpse into my memoir I’ve been working furiously on, amongst the pain of a femoral hernia (go forth and google). I’ve not long to go before I wind up my story, so here’s a little insight into what I’ve been working on. Thank you for reading – just keep in mind that this is a first draft. My book will be called ‘Chasing Away Salt Water’.

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The cure for anything is salt water: sweat, tears or the sea 

– Isak Dinesen (Karen Christenze Dinesen)

For a very long time, I’ve been trying to work out where to start my story. While there is a beginning and middle, there is no end. It doesn’t make sense to start telling my story from the beginning, so I’ll start from when I began to die.

August 1998

When you are dying, you leak.

There is a condition – death anxiety or death and adjustment – when the body reverts to ‘primal’ mode; a homogeneous process of ridding the body of inessential waste. Like a surrender of dignity for the dying, where one oscillates between dignity and necessity – the necessity of death – there is a simple hope pinned to your chest that at the end of this life, you can retain a part of who you were before your body began to rot from the inside out. It is the slowing down and cessation of life. We will all realise senescence and we are all going to die.

By design, the body is physiologically wired to know what it needs to do during the process of dying. The body expedites the process of draining fluid in strange ways. Here are a few I experienced before and after transplant:

Inactivity and the eventual inability to walk liquefied my muscles; withering the sinew until it began breaking down like compost. Perfect textbook atrophy.

I became incontinent and would often wet myself during coughing fits so violent, my lips, fingers and toes would turn a persistent shade of blue. I’m proud to say I never soiled myself. I could deal with piss, vomit and blood, but not shit. I wasn’t ready to have a nurse wipe my ass like a baby. That indignity could wait. This is what happens when you’re at the edge between life and death with Cystic Fibrosis –

Coughing so hard and for so long, I would vomit, fart and wet myself.

Vomiting made my eyes water and nose drip.

Too much coughing can break ribs. Broken ribs hurt.

My lungs bled and bleeds can be perilous.

You seep.

Bodies discharge fluids and stink up a room. I was familiar with the stench of death and dying, but from other people – not me. I would lay in bed and think of lilies because I thought, ‘surely it can’t be me leaching out something so rancid?’

Life peels away like an onion. It shrivels, much like a hollowed out husk that cannot be fed, while the attachment you once had to your life is ladled out of you like soup. I found myself disconnected from the person I used to be. Where was the girl I had shaped into a woman from circumstance and experience?

End stage illness is not liberating. It is disempowering – akin to having your insides scooped out with a trowel and dumped in a bin. You must then crawl to the bin, recover what is left and shovel whatever goodness you find back into your body.

Death is nothing like ‘Meet Joe Black’. There is no Brad Pitt. There is no New York City. There are no fireworks or romance. There is no talking to death. There is no spare time. There is no bargaining.

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Five days after my transplant, I had four drains removed from my chest. They were as thick as hoses and had been draining blood and sebaceous fluid from my new lungs. When the drains were removed, the leaking hastened. It had to be expunged, and it was urgent, breaking the levee. As I struggled to contain the flooding from my chest, my mood turned black – an odd narrative for me.

I had hoped all the leaking was over because I had survived, but the four hoses had left open wounds like crucifixes, and four spillways formed a syrupy pool in my hospital bed. And in my crotch. No matter how many pads of gauze I packed on, I leaked. Any exertion had pus spraying (not dissimilar to blood spatter) outward and down my trunk – the force behind it much like ejaculation.

I cried and swore at the nurses and whoever else was in sight because they weren’t helping me. I told them to go fuck themselves, such was my despair and pain.

The levee has broken many times since the hoses were pulled out of my chest, yet never anything like the torrent that was August 1998.

West End Magazine

And so the winter edition of the über glossy West End magazine has gone to print and is madly circulating. On pages 24-25 (yes, a SPREAD), you’ll find a feature about my journey thus far. It’s impeccably written, so I’m told and the magazine is a publication that celebrates all things South Brisbane – culture, people, food, fashion and local business. I’m honoured that I’m  a part of this edition which is their biggest yet. My good friend and kick arse photographer, Torsten Baumann snapped the colour images, while the black and white photo of my sister and I saying goodbye before I went to theatre for my transplant is by the indomitable Alicia Alit-Trevatt. Here is Tor’s photo essay about me from earlier in the month.

You can pick up a copy of West End Magazine around South Brisbane haunts or buy it at a newsagent. Ever since I moved to 4101, I’ve always looked forward to reading this magazine – it really is luscious.

Oh wait – here it is! 

Here’s my contributor photo. Hunt down a copy, have a coffee and enjoy!