Kidney Transplant Part 4 – Almost Home

Kidney iga blog

Visits – lots of visits

Packing up to go home after a little Friday to Friday hospital stay. Seven days. Lots of toast. Lots of Tea. Addicted to both now, which is an upgrade from Fentanyl. Unless you’re into that type of thing.

‘Good for recovery to be at home’, the doctor said, standing there in his blue scrubs, white lanyard, mask and hairy chest. And arms like a gorilla. A very intelligent gorilla. The ones you see in films with round glasses and quizzical looks on their huge faces. I love bananas. Stuffed into blue scrubs.

He also told me, the doctor, that they used to keep patients in for SIX WEEKS post-transplant. Mainly because the anti-rejection drugs weren’t as advanced. This meant families were only allowed to say hello through the glass while the patient paced like, uh, a gorilla in a cage. Or a big cat. Just hoping one day to be released back into the wild. Those six weeks are when you are most at risk from rejection and getting other infections. You’ve basically got no immune system at that point.

When the doctor left the dietician came in. Two ships passing in the night. In the day, though a door, saying hello to each other. The dietician told me I had to eat like a pregnant woman. Nothing unpasteurized. Nothing undercooked. Steak with a blue cheese sauce, out of the question. And I’d rather go to Pizza Express with Prince Andrew than eat a well-done steak. If you’re post-transplant or just curious about what the best things to eat after transplant are then this from the University of California is really good. Diet article.  Simple and effective. Like all good things.

The pharmacist also visited on that last day but I’ll leave that for another day because the drugs deserve a post of their own.  What I will say is that he had a high pitch laugh like a steam train that kept fogging up his little glasses.

Dialysis Decisions

A few days before any of these wandering medics dropped in on my room another doctor popped her head round the door. It was the same one from my first ever meeting about dialysis, with the brown eyes. Probably two years ago now. It’s the meeting that happens when the kidney is a lost cause. Your next choice is what dialysis to go on. Peritoneal Dialysis or Hemodialysis. Those were my options. Hitler or Pol Pot? Steps or The Venga Boys? That kind of question. Other hospitals offer other things. PD is at home. Hemo is at the hospital three times a week. PD fills you with fluid that attracts toxins out of your blood and then you drain out. Hemo is four hours three times a week getting your blood cleaned of those toxins directly, at the hospital.

At this meeting, where I decided on PD, I was sent to a little office to wait for the nurse. And in that room was the doctor with brown eyes. I thought she must have been a trainee so I offered her a biscuit. She said she didn’t want a biscuit in a very polite way and introduced herself as Katerina. This was a long time ago. Before things started to get top level bad. At the start of the journey, you could say, if you wanted to sound like a Radio 6 Music DJ. Strangely, this doctor, with her lovely brown hair, was also the Registrar on the ward when they drained fluid out of me for the first time. A few months after that first meeting. It was incredibly painful. This weird tube 3 inches below your bottom rib, taking fluid into your stomach then back out again later. The problem for me, which went on the entire time I was on dialysis, was that when the fluid was all drained and gone the suction would decide it was my insides it would pull on next. Imagine a milkshake with a long straw. And then what happens when all the milkshake’s gone. That’s what was going on inside my stomach and I felt it right up through me. Standing on a thorn with your bum. Three times a day for a year. Katerina was called in to check on me to see why it hurt so much. She was brilliant then, so calming and so interested. And here she was again, poking her head round the door of my transplant suite.

‘I recognised your name on the transplants this weekend,’ she said. ‘Thought I’d pop in and say congratulations.’ As she spoke I watched these tiny fleks of light, shimmering like dust in sunlight, float up around her, concentrate like water and flow towards me.

I tried to speak but I’d already fallen backwards and it covered me. The past few years, everything that had happened, just filled up the room until it hit the ceiling and started pouring out of me. Unrestrained emotion. A feeling I recognised from the time I was told my cousin had died. After that weekend in Amsterdam when the sky was red in Bristol. Mercifully rare but a hell of a thing, this feeling. And in the room somewhere while this unfolded Dr Katerina smiled her smile and left. And I heard her say ‘well done’ as she turned away.


The longest, longest, longest, beautiful cherry straw hug from my daughter when I walked in. She has it in there, this girl, that thing you can only describe with silence. Bafflement. Soft elation painted on those round cheeks. It’s hard enough not crying thinking about it when you’re writing. Impossible when you were there.

Everyone has been amazing this past week. Helping out behind the scenes. Kate. Mums and evil step mums. Dog. Mates. Work. After a day home, though, I feel completely useless. Kind of miss the hospital. The routine of it. The beeping machines had started to help me sleep and the reruns of Top Gear just aren’t the same anymore. And Kate is busy enough without me dropping more on her plate. No doubt it will be a bit easier on her days off from work. Or not waking up at 3am to feed Elin, cook dinner in the day and then walk the dog in the evenings. All with Elly clinging to her hip. While this is all happening I’m managing to consistently break my record for most tea drank in a day. Everyone I tell is impressed with this. When they say ‘wow, you’re so strong,’ I feel a bit embarrassed if Kate’s in the room. I just drink tea.

Day 3 at Home

Feeling a bit mentally weak. The fear of IGA Nephropathy returning and killing my kidneys again. That dirty little auto-immune disease that silently got me. And I’ve got this amazing thing now. This kidney. And feel a bit scared of losing it.  Every time I pee I stare at it looking at the bubbles. Having loads of bubbles is a symptom of protein in your wee, which is one of the ways they know you have IGA. (There are many, many others)

Anxiety and sketchiness is following me around. I’m walking around the house like I’ve just nicked two mars bars and a Freddo from the Post Office. I’m in the front room and can feel the old lady behind the counter watching me, right down those half moon glasses on her long, horrible nose. Feel like turning and running away. Straight out of the Post Office and back to the hospital where they can keep an eye on me. Luckily I’m back into clinic three times a week for the first month or so.

I only managed six clinics before I was at hospital for a twisted 36 hours. That’ll be next.

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