A match made in heaven
Eleanor Wenman was diagnosed with kidney failure. She was in her early 20s and the only long-term fix was a transplant. This is her story of her search for a donor and the long road to recovery.
‘‘What are you here for?’’
‘‘A kidney transplant.’’ Seven years. I’d waited seven years to answer that question. It was unreal but here I was, hospital gown falling off my shoulder as I struggled onto the narrow surgical table. People dressed in scrubs bustled around me, swapping jokes and calling out numbers.
I lay down, my bare back pressing against cold plastic and looked at the ceiling. Someone adjusted the overhead light.
What had my older brother Nick thought when asked that question? Nine years ago, he was in this exact hospital, maybe this exact theatre, being asked this exact question.
My mum would’ve already been under anaesthetic, surgeons removing her kidney to give to her only son.
Seven years ago, when I was 20, I started throwing up in the morning. I’d been to the doctor. My blood test results were off. Not by much, but enough to make the doctor pause. After all, my brother was only a couple of years into his new kidney, so who’s to say it doesn’t run in the family? Turns out it did.
People asked me how it felt, having kidney failure. My go-to was calling it a never-ending hangover, all day every day, in and out.
But there was more to it. There’s a tiredness you feel in your bones, a fog in your mind you can’t break through.
Kidneys loomed over my life. For five years I felt fine – or at least I thought I did. I’d been chugging along – going through uni, post-grad, into my first job – with nothing unusual, just a check up here and there.
There was a set point for me – a transplant. Everything before that point was time plodding along and everything after seemed a dark smudge to me.
But I didn’t know how far away that point was. I’d been picked up early, but we had to wait: there was a chance my kidney function could plateau.
But as time ticked away, so did my function. I felt it drop from 50 per cent, to 30, 25, 21 – eventually down to six.
All I could do was wait like a little clockwork toy being wound down.
It was a family friend who first put her hand up to donate – something I’m forever grateful for. It’s a long process. You have to make sure you’re a match, first of all, so the recipient’s body won’t reject the organ. You have to make sure
you’re in perfect health physically and mentally.
She slowly but surely moved through the tests, a background sense of urgency building as I felt sicker and sicker.
We were on to the final string of tests when we found out – she couldn’t donate.
I was walking from my Wellington flat, arms crossed against the cold, when my mum called.
Her words still echo: ‘‘It might not be a match’’. The last results weren’t looking good.
The world shrunk to a pinpoint.
I had plans, you see. A kidney transplant before 2019, then everything I’d missed out on. I was heading towards my late-20s so I’d watched my friends take OEs, move overseas, jump into the world. But I couldn’t. I’d been stuck, rooted by something uglier than the usual reasons of family, love, home.
With no donor I needed dialysis. My kidneys were giving up and were working at about 12 per cent of what they should and dialysis was a chance to boost that and give me control over my life.
I went on peritoneal dialysis (PD), an at-home version, which meant getting a catheter implanted in the lining of my abdomen. I could look down at my bare stomach and see an alien piece of soft plastic hanging out of me. The other half was curled up inside.
The idea behind PD is to fill up your abdomen with a dialysate fluid and leave it sitting there. The fluid acts like a magnet, attracting the waste my kidneys couldn’t filter out and after a while – about an hour – it would be drained out.
I’d do this at home overnight with the help of the dialysis machine on my bedside table. I would sanitise and re-sanitise my hands then prep the machine, pulling out two six-litre bags of fluid, warming it and watching it pump through tubes until I could connect myself up to it through my catheter.
Being filled up – I could feel every step, from the sudden shot of warmth across my stomach as the fluid went through the tube lying across it, to filling up – like when you’ve guzzled too much water and your skin stretches tight across your stomach.
Once done, the liquid would drain out like a plug had been pulled on a bathtub, right down to the gurgling as the last of the dialysis fluid was sucked out of me into a drain bag lying on the floor.
Every night, I’d be on the machine for eight hours – six cycles of dialysis, nine litres of fluid.
Then would be the day ahead. If I was lucky, I’d wake up with a headache. If I was unlucky, I’d fumble to unscrew my catheter from the machine and make it to the bathroom to throw up.
Each month, I’d get about 400 kilograms of supplies. About 28 boxes or 336 litres, all bagged up along with the shrapnel of dialysis: tubes, drain bags, cassettes, clamps.
The boxes would stack up along my hallway and long after they were gone, the indent they made stayed in the carpet.
This was my life for nine months. But a thread of hope ran throughout – my aunt, Stephanie Wenman.
I don’t remember how I found out she volunteered to donate. All I know is she went in to bat for me and she swung hard.
Sometimes the biggest battle was waiting – waiting for tests, waiting for results but they rolled by, faster than the last time. It seemed like this was the one and bit by bit, things were clicking into place.
Word started filtering through – first maybe we’d have surgery scheduled by the end of 2019. Then September was mentioned. It was nearing the end of June and while 13 weeks seemed an age, it was doable.
Then I got a call.
A cheery voice on the other end – a transplant coordinator: ‘‘How would you like a transplant on July 8?’’
Voice shaking, I said, ‘‘Yes, I’d like that very much’’.
Thirteen weeks became 13 days.
JULY 8
‘‘They’re ready for you.’’
We all looked up – me from my hospital bed, my parents and my partner Pascarn from their seats around me.
It was Monday, late morning, and I was minutes away from a transplant. Somewhere in the depths of the hospital was my aunt, already under anaesthetic.
An orderly unclipped the brakes on my bed. It shuddered into movement and I couldn’t help the tears. I sobbed – with relief, with worry, I don’t know.
I hugged my parents, clinging tight to them.
Pascarn walked every step beside me as I went down to theatre and sent me off with a kiss for good luck.
It was crowded with surgeons, theatre nurses, anaesthetists, everyone.
I slid across from my bed to the narrow surgery table and waited for the question.
‘‘What are we doing here today?’’
‘‘A kidney transplant.’’
A sharp prick in the crook of my elbow – anaesthetic.
No counting down. Instead, stars. Dizziness. Black, a hint of a dream.
Muffled words filtered through, a beeping machine. Air moved over my skin. I tried opening one eye.
‘‘Welcome back!’’
It was done. I was out, Steph’s kidney safely inside me. Steph herself in the same recovery ward as me.
I was attached to all sorts of things I wasn’t yet aware of – a central line in my neck, with four stubby tubes hanging from it, fine tubes on either side of my abdomen for delivering anaesthetic, larger tubes draining fluid from the surgical site, a catheter.
I walked on the second day. All my pieces attached, I took three steps across the room to a high-back chair. It was slow, it was painful, the nurse seemed strangely enthusiastic. Every step I took, something tugged – the tubes in my neck, the catheter.
My belly felt strangely swollen – sometimes numb, sometimes sore – and across it lay a patchwork of dressings.
I was in hospital for nine nights. Each day I woke up feeling more and more like me. I’d forgotten she was there, this person who could think, who could laugh and plan and live.
Muffled words filtered through, a beeping machine. Air moved over my skin. I tried opening one eye. ‘‘Welcome back!’’ It was done. I was out, Steph’s kidney safely inside me. Steph herself in the same recovery ward as me.
It’s been four months since then. The fog has lifted and the future’s always a smudge, but it’s a hell of a lot lighter.
Every time I thought about writing this whole thing down, my mind crowded with words, but there’s always been one part I – and every transplant recipient – get stuck on: how to say ‘thank you’.
My aunt saved my life.
It’s as simple and as complicated as that. ‘Thank you’ are the words I keep falling back on, but within them are a thousand moments: thank you for volunteering, for every blood test and scan, thank you for putting yourself through this.
But most of all, thank you for my life.
I was heading towards my late-20s so I’d watched my friends take OEs, move overseas, jump into the world. But I couldn’t.