This time 20 years ago: on the waiting list

This time twenty years ago, I was dying in hospital. Not to be hyperbolic, but I really was. That’s why it was so strange when I had to go into hospital last week to start IV antibiotics for a sinus infection. Sinus – it sounds so innocuous, doesn’t it? Except that it’s become one of my biggest ongoing health issues. I’ve had four big sinus surgeries where surgeons have apparently scraped the base of my skull (their words, not mine), but I still end up with a head full of polyps and infection because that’s just the way my CF rolls.

After brawling with a sinus infection for months, I deteriorated last Wednesday, so on Thursday I found myself in emergency with my mum. After four ultrasound guided attempts to get blood, a vein was found in my foot and later that afternoon I was taken to ICU to have a CV line placed in my jugular.

I have impossible peripheral IV access, so a CV line is the only way in. When I arrived upstairs to have my line placed, I was greeted by smiling faces, but I knew I’d have to answer some questions because I always have to.

‘Why do you need a central line?’

‘Fuck,’ I thought, ‘here we go’. I explained that I was impossible to access.

‘I’m sure we could get something in.’

Um, no. Not even when the best anaesthetists struggle.

‘What about a PICC line? A central line seems like a bit much.’

It was when I had a small crowd of people disputing what I’ve known to be true my entire life, and with the CV line on the trolley ready to go, when just short of losing my shit I said ‘with all due respect, I know you’re the best, but I have no access. I can’t have a PICC in my left arm because there’s a massive clot there from a port-a-cath which was my seventh, and on my right arm there’s nothing. Trust me, if I could have a PICC line in my arm rather than a line going into my jugular, I would’. Now that’s for a couple of reasons. Despite my CV line being sewn into my skin with stitches to anchor it, if I did happen to rip it out I’d rapidly exsanguinate aka bleed to death because it’s in my jugular. There’s also the ever present danger of infection which can lead to blood poisoning and septic shock, and you know what? Been there, done that.

And so I was polite, but firm and the procedure began. I was taken to the ward and I politely asked to be told my brilliant consultant I was leaving on Saturday because being in a hospital room isn’t an entirely painless experience for me. After spending so much time ‘incarcerated’, after my transplant and when I was eventually well again, I had this seemingly limitless freedom. I wasn’t on a hospital schedule. I could sleep uninterrupted, I could stay out all night dancing, and go out any time I wanted. I could take long baths and spend time in nature. So when that freedom is taken away and there’s no other choice except to be an inpatient, it feels like the walls are closing in and I have to get out of there as fast as I can.

Cutting back to January when I had my left ovary removed, I noticed on my third day in that I’d been feeling uneasy about where I was. I tried meditating, but my heart was banging like a racehorse and I ended up having an anxiety attack because I came to realise that I was in the exact same room I’d been in when I’d nearly died in back in 2008. And so … onwards.

It’s always an exercise in humility when I hark back to what I was doing twenty years ago. It calls to mind how and when my body began to wind down. I was lily white – fluorescent even – and my muscles had turned to mush, my bones like chalk.

By this stage, I would have stopped reading because I wouldn’t have had the energy for it – I couldn’t even concentrate on a newspaper let alone Seamus Heaney’s ‘The Redress of Poetry’. My oxygen levels would have been perilously low, I was a shade of cyanotic blue, and while I wasn’t on any pain relief yet, I really should have been. One wasn’t palliated for CF back in the 1990s, and the pain was exquisite in a way you never forget.

My partner would have still been taking me on outings, but I’d be tethered to an oxygen tank and needed help walking because a wheelchair was the final insult. Billy and I grew so close in what should have been the final six weeks of my life (also exquisite).

So twenty years ago, I was dying. And I was okay with that. Really, I was. I’d had twenty-one years of being in the world where I was fierce, loud, brazen and totally shameless. I was addicted to life. Nothing was nuanced with me, because it never had been. Every moment was fully weighted, yet coloured with urgency. I was indifferent to what people thought of me because I had lived my mad, raucous life – all twenty-one years of it. But then one night in late August came a phone call, and I would be ripped from my dying and thrown back into life with such violence. That changes a person in ways I can’t put into words. But I’m still here, and life is beautiful.

It was like striking oil! Just call me Carly-Jay Clampett.
Up in ICU, just having had my CV line placed
Having my line redressed – ORGASMATRON.
At home, and so tired.
Post clinic, looking smug AF.

10 thoughts on “This time 20 years ago: on the waiting list

    1. Thanks for reading, Jen. I can’t fault my transplant team – they are peerless. It’s when you meet new people who don’t know your history that’s one of the trickier bits to navigate. In the end, the doctor who did the line was brilliant. It was the least painful CV line I’ve ever had placed XO


  1. Hi Carly-Jay, what a shame they could not assemble the same team who had treated you earlier in your life so you wouldn’t have to explain undeniable facts through gritted teeth so that all would understand the situation. Great to see your big smile in trying times. Whenever I am depressed I will see your smile in my mind’s eye and feel better !
    All the best,

    Liked by 1 person

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