DKS

Kidney Transplant Part 5: A&E and Tragedy

The mirror

*The images above show me before and after Kidney transplant after IGA nephropathy caused Kidney Failure. The girl in the pictures is not the same person. Thanks.

I didn’t look a mirror in the eyes for about two years. From 2020 to the middle of 2022. Avoiding my swollen face like boxers do the day after a fight. But now, ten days post op, I’m in the bathroom and there I am. That face. The whites of my eyes. The blue. Old friends in the mirror. For two years they were behind the dull, tired haze of illness, dialysis. But now we’re reunited. The fluid is gone. That clinger on. More than a stone of it stripped from my body. Eyes bright white and blue. Skin clear. The rash on my back gone and the chopped sores on my legs just old brown marks. The new bean has released me from that forced adolescence kidney failure brings. Two years of being quiet, moody, spotty and always tired. All of it gone within 10 days. Apart from the moody part. That lives on. Another old friend.

Contentment

My daughter is standing in the bath. I’m sore from the operation but with so much more mental energy. My kidney function was below 6 percent when she was born. I could hardly pick her up after 3 months. But things have changed. Cuddles are still at her level, but at least now I’m able to concentrate. Finally. Finally able to enjoy moments like this. Her dancing in the bath. No stopwatch in my mind running down the hours before the next dialysis exchange. Time to breath. To live, really. And she’s dancing in the bath. Kate pressing her hair into a little blonde Mohican. And she’s trying not to laugh, unable to muster a cry. That confused revelry kids live in. And I’m just sat there with nowhere else to be. Content and still while she breaks into a giggle that lasts forever, shouting ‘Daddie, Mummie, Teeeeth.’ Kate brushes her teeth and takes her to bed.

By midnight I was in the car back to hospital.

A&E

Throbbing leg in the evening when I’m watching TV. Running through reasons for the pain. It’s so confusing having pain you don’t understand. Did I overstretch reaching into the cupboard? Maybe it was picking up that bag? Have I caused my imminent demise somehow? Impossible to know. Impossible to stop asking the questions. I wonder if this is a mindset inherited from the Covid pandemic. Why is my throat sore? Who did I see five days ago? Have I caused my imminent demise? The questions with the lingering answer.

The throbbing is worse by the time I get to bed. Time to google it and pick a cancer. Scroll though and settle on Deep Vein Thrombosis with a likely Pulmonary Embolism. All factors considered this is what it must be. Long operations make DVT a real risk. Stopped wearing my compression leggings that day. All making sense. Short of breath. That’ll be the blood clot searing up through my veins into the lung. Likely fatal if I don’t leave now.  Reach for the lamp switch. Kate stirs.

‘Babe,’ I say, turning on the light. ‘I’m going to the hospital.’

‘Why, what’s wrong’.

‘Deep vein thrombosis with a likely pulmonary embolism.’ She sits up.

‘Maybe ring the ward first to see what they say.’ Rubbing her eyes. I call.

The consultant says there are no beds on the renal ward but best to go to A&E just in case.

Kate says, ‘Just reading here. It says you’re most at risk if you’re over 60, overweight, smoke, have had DVT before or have cancer or varicose veins. You don’t tick those boxes so that’s good.’

‘Yeah there are others though,’ I say. She keeps reading.

‘Take contraceptive pill or HRT?’

We both laugh and she says ‘drive safe, it’s going to be ok’ and ‘let me know when you get there.’

My scar hurts on the drive in. It’s midnight. I’m ten days post up. The drive is 35 minutes. I park, can’t work out how to pay and go in. The waiting room is complete chaos. Closing time at Wetherspoons. Bodies on the floor. Woman and children looking nervous. Girlfriends crying in their boyfriends’ broken arms. Old fat men who’ve seen it all before. Looking around, smiling, calm and slowly dying. I get over to reception. A sign says ‘WAITING TIME 6 HOURS’. I lay it on thick about the transplant and the pain and they push me on through backstage. I’m feeling really dizzy and unwell. Everything is bright like when you just wake up and the sun shines in your eyes. I feel like Britney Spears walking out of a nightclub, paparazzi flashes everywhere, trying to keep myself together.

I sit in a cubicle. The bed is for camping. The paint on the walls is chipped. There’s piss on the floor in the cubicle across the way and a man keeps screaming with pain and then laughing and saying sorry. Screaming again. The piss is still there. The 91 year old man opposite looks down at it. Tells me he was outside in an ambulance for 12 hours before they let him in. Chest pains, he says. That won’t go away. Something about these days feeling a lot like the 1930s. The light is blaring bright. The nurse comes over and says sorry, takes my wristband off and puts one on with the correct name. A paramedic team drop off a patient. The nurse ask them to stay. A paramedic tries to put a cannula at the top of my forearm. Says she hasn’t done it in years.  Leaves the needle hanging in while she gets the rest of the kit. Nice to get a free acupuncture session at 1am.

‘One of those days,’ she says, taking the needle out and driving the new one back in. I agreed. It was, wasn’t it. An hour or so later the nurse comes in to take my blood. She’s smiling. Making jokes. Asks a care worker to clean up the piss on the floor opposite. Warzones are her thing, you can tell. Set up to function in hostile environments. Like deep sea creatures, flourishing under pressure.

I’m in a daze when they wheel me out for an X-ray at 5am. I just want to go home. Away from the bright room and the noise. After the X-ray, the CT scan to check the lungs. They run a die through your cannula that runs hot down your arms and along your legs.

‘You might feel the same as if you’ve peed yourself,’ she says.

‘What drunk?’

She’s back behind the screen already. I laugh on my own and then the warm fills me up. It’s not a feeling that has many equivalents. Imagine taking all of your veins out, stringing them into a ball, popping them in the oven for five minutes like a butter croissant, taking them out again, all warm and crispy, then unraveling them and popping them back in. It’s like that. Quite nice really. If you’re into that kind of thing.

Back to the room and, at 11am, 11 hours after I arrived, I saw a doctor.

‘Your heart is going like the clappers but all results are fine. Best you go home now and just rest.’

And that was that.

The real reason for me feeling so bad, I would find out at transplant clinic later that week, was because of a phosphate deficiency. Good because it means the kidney is working well. Bad because my body couldn’t keep up with replenishing it. The result is the Britney Spears circa 2007 feeling. I can relate, Brit. True also that a very lassez-faire consultant had told me to completely stop taking my phosphate Sandoz supplement a few days before. She hospitalized me, which was nice. It wouldn’t be the last time she got me worked up and scared for no reason.

Tragedy

Before I leave I get given some mouldy toast. Don’t have the power left to tell them it could kill me. Bacteria not good. Their working conditions worse. I leave and feel sorry for the staff working A and E. Understaffed does not do the situation justice.

The day outside is overcast. It’s midday and I stand trying to work out how to pay for parking. I’m right outside the ultrasound unit, where they originally tested me for testicular cancer before the IGA diagnosis. As I’m paying I can feel my emotions are overwrought and twisted. Exhausted, frustrated, happy I’m not dying. A woman walks out of the doors past the pay machine. She’s crying. No, it’s something different from crying. Something stronger. From the top shelf. The machine beeps at me, says no. And holding this woman in her arms is her friend. Leaning over to hold her up, arms right over her shoulders. They crash onto the metal bench. The machine goes back to the start and tells me to try again. All of a sudden the crying seems separate from the woman. Her body shattered. The sadness infinitely deep. So hard not to look. Tears in all of our eyes. And as I look back at the parking machine I see again the Ultrasound Unit sign above the door. Remember this is where we first met Elin. The moment we were told everything was ok. That the baby was healthy.

I text Kate on the way home and ask how Elin is, that I’ll be home as fast as I can.