Anaesthetic can do weird things to you. It makes you sleepy (clearly) but in the past I have arrived back from surgery giddy as a chipmunk in spring. When I was wheeled back onto the ward after the transplant, I was not so much giddy as...suffering from delusions of psychosis. This was how I announced myself to Mum and Sam anyway, scaring the shit out of them in the process. I spent a wide-eyed half-hour protesting against the poison in my body before declaring, "I don't feel a shred of hope and I shall never be happy again".
I remember only:
I remember only:
1) being told the kidney was not producing urine, and consequently thinking the transplant had failed
2) that I had to stop myself asking the doctors to take the kidney out
and
3) despising myself for my ingratitude. It was the first in a range of unexpected emotions I would feel over the coming week.
After half an hour of drug-induced ranting I finally - mercifully - passed out.
Tuesday
When I wake up, a nurse is prepping a dialysis machine beside my bed. "Your potassium is high and we want to get it down whilst the kidney kicks in." So still no kidney function, still no urine output and a dialysis session for good measure; things could certainly be better. I think I hear a doctor say, "We're not worried, this is normal" but for the next few hours I alternate between sleeping, dribbling and murmuring incoherently to Mum.
 |
| 1st photo post surgery. Gnarly hardware in my neck. Eyebrows look decent though. |
In the late afternoon, one of my uncles suddenly appears, unannounced. It is incredibly kind of him to come, but perhaps not the most opportune time; I can barely keep my eyes open let alone carry a conversation. Mum, who would really like to be reading Hello! and stroking my hand, chats away genially and after an hour (which in post-surgery time is a decade) he takes his leave.
More sleep. I am woken by the Professor, come to tell me that my haemaglobin has dropped down to 5.2 - what laymen like myself refer to as the Uh-Oh Range. "We don't like to transfuse after a transplant, but in your case we don't really have an option, so we'll give you two units over night." He turns to Mum. "Does she look pale to you?"
"She's ginger, she always looks like that."
I am not in a position to argue, but a blood transfusion doesn't sound very good. I drift back to sleep, grateful to blood and organ donors alike.
Wednesday
I wake up feeling about a zillion times better - the blood has made a huge difference. I find I am able to stay awake for marathon stints of two whole hours, and make jokes - but that's because I'm naturally hilarious. I think I might have had something to eat, I can't remember for certain but it does sound like me - I just wish my penchant was for grapes or steamed tofu rather than Marks' shortbread. I make a very conscious decision not to worry about my food consumption for a while; given my, ahem, history of eating this is not easy, but nourishing this kidney is more important than my thigh gap. I think about my donor for the 100th time, but of course he is no longer in the mortal realm to know this.
Flowers arrive from Maisy and her Mum, to compliment the beautiful bouquet Kat already sent. I believe them to be beautiful, anyway: flowers constitute an infection risk on hospital wards these days. A nurse brings Maisy's blooms in for a supervised visit: there is just time to take a photo and shed a tear of gratitude before they are whisked away.
Flowers arrive from Maisy and her Mum, to compliment the beautiful bouquet Kat already sent. I believe them to be beautiful, anyway: flowers constitute an infection risk on hospital wards these days. A nurse brings Maisy's blooms in for a supervised visit: there is just time to take a photo and shed a tear of gratitude before they are whisked away.
 |
| Maisy and Jo's beautiful flowers |
Something marvellous happened in the night: the kidney started to make urine. Not a lot, and when I look in my catheter bag all I see is an alarming pool of blood...but "that's normal", and the Professor was pleased (and if the Professor is pleased, everyone is pleased). My brothers come to visit. They bring lots of Percy Pigs. My second uncle comes, bearing presents and a card with a word search on the front that genuinely makes me quite excited. It is an effort to talk, not because I keep nodding off (though I do) but because I am pinned down by all the tubing: there is a catheter in my neck, one in my stomach, another jammed into my urethra; in my right arm I sport two drips, one of which seems to be permanently attached to a bag of something, though nobody seems to know what.
The nurses are telling me to drink water but this is totally counter-intuitive. For the last six years, I have been explicitly warned not to drink and I worry I'm going to over-inflate and pop if I imbibe the required two litres per day. My entire life has reversed in a matter of hours. The medical staff on the transplant team have a totally different perspective to the doctors and nurses from the dialysis sphere - it is exhausting trying to keep up with all their varying demands: Don't drink! Drink! Dialyse! Don't dialyse! Don't eat phosphate! FOR THE LOVE OF GOD HAVE SOME MILK! But it is equally exhausting reading Heat, so maybe it's just me.
 |
| Water water everywhere...and all the time... |
They also bring me tablets four times a day and I swallow them: some are familiar from my first go-round, mainly the predniscilone which is a steroid and likely to make my cheeks puff up like a hamster storing lunch. They also make me squirt something in my mouth that tastes a little bit like bubblegum and is designed to stop me getting Hep B, so I don't mind too much, and I've had more unpleasant things squirted into my mouth over the years. I do mind, however, having to rub my gums with some aniseed-tasting goo four times a day to protect myself from oral thrush. I decide I would rather just get oral thrush and lie whenever the nurses ask if I have taken it.
In the late evening, when Mum goes home, I realise I can watch Masterchef on my phone. Bliss.
Thursday
Really good morning. I am starting to feel better and even decide to venture from my bed to the adjacent chair. This takes a while, and requires the help of two nurses. One of them, an adorable junior nurse, is bored and leaps at the chance to give me a sponge bath; I am so abhorrently dirty that I don't care that she strips my night gown clean over my head. The warm water feels lovely, but my hair...ugh Jesus, my hair: it is so grimy it appears to have turned a shade darker.
I am on my seventh gown. The drain, inserted into my abdomen to relieve any excess blood, leaks continuously. Each time, the nurses dutifully strip off the sodden dressings and replace it with fresh until a few hours hence I feel the familiar trickle and have to press the bell and apologise that I'm bleeding again, and would they mind padding it up? The hospital setting is where us Brits truly come into our own: we apologise for everything, from bleeding to hurting to needing the toilet, and we are exceptionally polite - I have never had a blood test for which I haven't given thanks. Later, one of the wonderful Jamaican nurses sucks her teeth whilst taping me down and says, "You need a suction bag, otherwise it's just going to keep on bleeding..." Eventually, a surgeon comes to take a look and pronounces, "I think we should put a suction bag over that, so the blood will collect instead of leak" and I catch the nurse's eye, and we grin. The nurses run the show around here. They have all been phenomenal and should be on footballers' wages.
My brother's girlfriend Hannah visits, a joy as always. She has a knack of saying the right thing and she brings me presents from press shows: this time it's a black beanie with cat ears that I pull on and wear with glee. I think some more Percy Pigs might have snuck in there too.
My brother's girlfriend Hannah visits, a joy as always. She has a knack of saying the right thing and she brings me presents from press shows: this time it's a black beanie with cat ears that I pull on and wear with glee. I think some more Percy Pigs might have snuck in there too.
 |
| Looking about 7 years old in my new favourite hat |
By the evening I am cranky, because I am scared. I am scared the kidney will never start working properly, even though my urine output is steadily increasing. I am scared it will work for five days, five months, maybe even five years, and then start to fail. I am scared about what will happen when I leave the hospital; I realise I have absolutely no contingency in place, for anything, and any future plans I did have revolved around being on dialysis for the rest of my life. I am scared because there was no time to prepare for this, and now I don't know if I can cope with the results. I am just scared, and when the nurses turn the lights off for the night, I lie flat on my back, unable to move, and have a little cry with Bear.
 |
| This is me being scared and laaaaame |
Friday
Today is My Big Day of Visitors. Mum comes, because she is amazing and comes day in, day out, and is later joined by Joanne, who has flown over from Ireland. Joanne is an excellent hospital visitor: she spends thirty minutes taking the piss out of me and the other half connecting my phone to the hospital Wi-fi; then when she sees I'm getting a bit drowsy and knows when to say goodbye, although I'm sad to see her go. Her departure overlaps with the second coming of my uncle (the better one) and he stays until Old Man Edwards walks through the door, besting Joanne's effort (though just by a whisker) by flying in from Dubai. He brings me perfume, which I worry may be a hint (no shower for 6 days and counting) and the Evening Standard so we can do the crossword together, a long-standing Daddy-Rosy hospital tradition. We are disconcertingly unsuccessful, which we agree to put down to jet-lag and/or major surgery.
Siobhan and Katie arrive next, and because they have come straight from the normal, functioning world where people aren't continuously dressed in pyjamas and urinating into jugs, I think how beautiful and exotic they both look. They both bring lovely gifts that I have nothing to deserve - Katie thoughtfully got three magazines in A5 as "the normal ones might have been too heavy for you to lift." She also produces three McDonalds vouchers - in themselves a superb donation - that were sent to her office on Monday and are for exclusive use of the McD's by Guy's Hospital. It is very eerie. We all agree it was a sign.
Not long after they leave, Sam and his girlfriend Adele come. Adele (God bless you, loving) brings me dry shampoo. They are about to embark on a weekend of London tourist activities as part of Adele's birthday present (her birthday was in May - good work Sam) and I enjoy listening to their plans until my eyelids grow heavy and I have to kick everyone out. They go off with Dad in search of dinner and I attempt to fall asleep.
As I try to get comfortable, I glance down at my fistula. My poor, poor fistula, once the centre of my universe, now totally ignored by everyone. He has worked so hard for me these past six years and now nobody cares about him. Should the transplant prove successful, eventually he will be tied off and maybe even flatten out. I run my index finger over the bulge and feel him pulsing away, still ready to help should I need it. He's like Woody in Toy Story - I guess that makes the new kidney Buzz. I'll never forget you, little fistula.
Saturday
I start the day early with a spot of 6am catheter removal. I have mixed feelings about this: it has become very uncomfortable so I shall glad to be free of its constraints....but I haven't urinated in six years, and what if I've forgotten how to do it? Or what if urine spurts out of me like a burst water pipe? The nurse slides it out in a flash: nothing. Then, an hour or so later, I realise I need to go. At least, I think I do, I don't remember it feeling like this: there is pressure, but it is very sore like when you have a urinary infection, and when I need to go, I need to go, which isn't ideal because I am still moving at the pace of a darted sloth. I make it to the toilet just in time and it turns out I have forgotten what to do because a fair amount of piss ends up on the floor. I have zero bladder control but I am weeing. I am weeing. This is monumental, arguably miraculous: I had a 9% chance of getting this kidney...then again, not having to urinate was useful. I have a little panic as to whether the urine is mine or my donor's. Do I have his pee inside me? Ew. The kidney doesn't feel like mine. I don't know if it ever will.
I didn't think this day would ever come. I simply could not conceive of it, and if you had told me I would never have believed it, but it has come all the same: I am sick of M and S food. Dad arrives, bearing pretty much all the Saturday newspapers, and asks what I want for lunch. I mentally list the M and S repertoire...but nothing appeals. Oh my God. Ok, don't freak out. Christ - maybe having someone else's kidney has altered my genetic make up? Maybe my donor didn't like M and S sandwiches? What if I never eat one again?! I settle on some sort of panini and suggest he goes to (whisper it)...Starbucks.
I have a nap, and when Mum arrives, I wake up and burst into tears. It is finally all too much. The shock and rush of it all is one thing, but the guilt is turning out to be overwhelming at times. I had been fine before the transplant, I had been happy. I had made my peace with being on dialysis for the rest of my life and I was just getting settled into my nocturnal routine. I had given up any notion of getting a transplant and now the universe has uppped and handed me one, just like that, for no reason, with no notice, whilst there are people out there desperate for a transplant that will utterly transform their arduous existence. Instead, I got it, and I don't feel like I deserve it. My donor is dead and his family is grieving - shouldn't I be jubilant? None of this feels real yet. It's like I was hit by a truck then simply stood up with no broken bones and no pain; I wonder for a moment if in fact I have dreamt the whole thing.
Mum and Dad stage a jail break and take me to the exotic location of the hospital foyer. It is the first time I have felt fresh air on my skin for six days. It is utter bliss to be away from the noise, heat and activity on the ward and we drink and hot chocolate and eat cookies and talk about how the hospital has become the sixth member in our family. "This is just the next chapter," says Dad, "and there will be more to come after this." This is the most palatable way I have found to think about it all to date. This transplant has not cured me of kidney failure, nor negated me from ever returning to dialysis in the future; it is simply the next phase in the ebb and flow of my disease. Yet it is a wonderful, humbling step forward. (The following morning I find myself sitting with the sun on my face and allow myself a moment of pure happiness: suddenly the possibilities of my future unfurled before me, and I give thanks, over and over.)
My parents help me shuffle back up to the ward when a crazy homeless guy comes into the foyer and starts shouting. On the way we pass a family with young children, and the father steers them away to let me pass. I swear I hear him whisper, "Let Mr Merrick take his evening stroll in peace." I am currently carrying an additional 7kg in fluid.
Sunday
I have been discharged, after 6 days. Dad is particularly concerned about this. "I'd like to speak to the Professor."
"On no account do I give you permission to do that. I forbid you from talking to him."
At that moment, a nurse appears to take out the last of the tubes/drips/bags/what-not hanging off my person and as soon as she pulls the curtains, Dad seizes his chance. Damn.
"He was very dismissive," Dad huffs when I am dressed and ready to go, "he said, 'That's just how we do things here'". This is one of the worst things you can say to my father, along with, 'Let me put you on hold' and (more inexplicably) 'Is everything alright with your meal, Sir?' I distract him by getting him to help me pack. I've been in hospital less than a week and yet have somehow managed to accrue triple the amount of baggage I arrived with. My drugs for the next two weeks take up Dad's suitcase alone.
I need to decompress before venturing back into normal life; I need an air lock, or a half way house, like a released convict. Whilst everyone else was talking earlier in the week, my big brother and I had Googled the name of the old guy from The Shawshank Redemption, the one who can't acclimatise to the outside world and ends up hanging himself. I don't want to end up like Brooks. Therefore, Dad and I decide - once I convince him I won't explode upon leaving the confines of the hospital - to head for his hotel, located, fortuitously, up the road at Bank.
Once there, Dad sets me up in a comfy chair, hands me InStyle and turns on Radio 3. We listen to choral music and I read an interview with Drew Barrymore. I am superlatively happy.
It is time for my inaugural shower. After twenty heavenly minutes, I have clean hair. I peel off the dressing and inspect my new scar properly in the mirror: it is long, running from my pubic bone up towards my left hip, but it is very neat and the surgeons glued it together so it should heal nicely. That's right, they glued it. I am a Prit Stick and a few sneezes away from internal haemorrhage. I don't care about the scars, really. I have a few now, but by the time I've acquired one it is too late to do anything about it, they are permanent whether I want them or not. They are a map to my history.
In the evening, I am finally ready to go home. This might just be the scariest bit of all, because my life came to a dead halt at the exact same time the previous week: I dropped everything and ran, and now it is time to pick everything up once again. The bins need to go out, the gas bill needs to be paid and I have an essay due in two months. Christmas is six weeks away. Now it begins.
Now it begins.
***
Coming soon - The Phone Rings Part III: The Final Instalment. Will I set myself on fire, left at home alone? Will life ever be the same again? Will the gas bill get paid? Stay tuned.....
Today is My Big Day of Visitors. Mum comes, because she is amazing and comes day in, day out, and is later joined by Joanne, who has flown over from Ireland. Joanne is an excellent hospital visitor: she spends thirty minutes taking the piss out of me and the other half connecting my phone to the hospital Wi-fi; then when she sees I'm getting a bit drowsy and knows when to say goodbye, although I'm sad to see her go. Her departure overlaps with the second coming of my uncle (the better one) and he stays until Old Man Edwards walks through the door, besting Joanne's effort (though just by a whisker) by flying in from Dubai. He brings me perfume, which I worry may be a hint (no shower for 6 days and counting) and the Evening Standard so we can do the crossword together, a long-standing Daddy-Rosy hospital tradition. We are disconcertingly unsuccessful, which we agree to put down to jet-lag and/or major surgery.
Siobhan and Katie arrive next, and because they have come straight from the normal, functioning world where people aren't continuously dressed in pyjamas and urinating into jugs, I think how beautiful and exotic they both look. They both bring lovely gifts that I have nothing to deserve - Katie thoughtfully got three magazines in A5 as "the normal ones might have been too heavy for you to lift." She also produces three McDonalds vouchers - in themselves a superb donation - that were sent to her office on Monday and are for exclusive use of the McD's by Guy's Hospital. It is very eerie. We all agree it was a sign.
Not long after they leave, Sam and his girlfriend Adele come. Adele (God bless you, loving) brings me dry shampoo. They are about to embark on a weekend of London tourist activities as part of Adele's birthday present (her birthday was in May - good work Sam) and I enjoy listening to their plans until my eyelids grow heavy and I have to kick everyone out. They go off with Dad in search of dinner and I attempt to fall asleep.
As I try to get comfortable, I glance down at my fistula. My poor, poor fistula, once the centre of my universe, now totally ignored by everyone. He has worked so hard for me these past six years and now nobody cares about him. Should the transplant prove successful, eventually he will be tied off and maybe even flatten out. I run my index finger over the bulge and feel him pulsing away, still ready to help should I need it. He's like Woody in Toy Story - I guess that makes the new kidney Buzz. I'll never forget you, little fistula.
Saturday
I start the day early with a spot of 6am catheter removal. I have mixed feelings about this: it has become very uncomfortable so I shall glad to be free of its constraints....but I haven't urinated in six years, and what if I've forgotten how to do it? Or what if urine spurts out of me like a burst water pipe? The nurse slides it out in a flash: nothing. Then, an hour or so later, I realise I need to go. At least, I think I do, I don't remember it feeling like this: there is pressure, but it is very sore like when you have a urinary infection, and when I need to go, I need to go, which isn't ideal because I am still moving at the pace of a darted sloth. I make it to the toilet just in time and it turns out I have forgotten what to do because a fair amount of piss ends up on the floor. I have zero bladder control but I am weeing. I am weeing. This is monumental, arguably miraculous: I had a 9% chance of getting this kidney...then again, not having to urinate was useful. I have a little panic as to whether the urine is mine or my donor's. Do I have his pee inside me? Ew. The kidney doesn't feel like mine. I don't know if it ever will.
 |
| My "I've just urinated" selfie - note, please, the DVT socks (one is rolled down because it got a bit of pee on it) |
I have a nap, and when Mum arrives, I wake up and burst into tears. It is finally all too much. The shock and rush of it all is one thing, but the guilt is turning out to be overwhelming at times. I had been fine before the transplant, I had been happy. I had made my peace with being on dialysis for the rest of my life and I was just getting settled into my nocturnal routine. I had given up any notion of getting a transplant and now the universe has uppped and handed me one, just like that, for no reason, with no notice, whilst there are people out there desperate for a transplant that will utterly transform their arduous existence. Instead, I got it, and I don't feel like I deserve it. My donor is dead and his family is grieving - shouldn't I be jubilant? None of this feels real yet. It's like I was hit by a truck then simply stood up with no broken bones and no pain; I wonder for a moment if in fact I have dreamt the whole thing.
Mum and Dad stage a jail break and take me to the exotic location of the hospital foyer. It is the first time I have felt fresh air on my skin for six days. It is utter bliss to be away from the noise, heat and activity on the ward and we drink and hot chocolate and eat cookies and talk about how the hospital has become the sixth member in our family. "This is just the next chapter," says Dad, "and there will be more to come after this." This is the most palatable way I have found to think about it all to date. This transplant has not cured me of kidney failure, nor negated me from ever returning to dialysis in the future; it is simply the next phase in the ebb and flow of my disease. Yet it is a wonderful, humbling step forward. (The following morning I find myself sitting with the sun on my face and allow myself a moment of pure happiness: suddenly the possibilities of my future unfurled before me, and I give thanks, over and over.)
My parents help me shuffle back up to the ward when a crazy homeless guy comes into the foyer and starts shouting. On the way we pass a family with young children, and the father steers them away to let me pass. I swear I hear him whisper, "Let Mr Merrick take his evening stroll in peace." I am currently carrying an additional 7kg in fluid.
Sunday
I have been discharged, after 6 days. Dad is particularly concerned about this. "I'd like to speak to the Professor."
"On no account do I give you permission to do that. I forbid you from talking to him."
At that moment, a nurse appears to take out the last of the tubes/drips/bags/what-not hanging off my person and as soon as she pulls the curtains, Dad seizes his chance. Damn.
"He was very dismissive," Dad huffs when I am dressed and ready to go, "he said, 'That's just how we do things here'". This is one of the worst things you can say to my father, along with, 'Let me put you on hold' and (more inexplicably) 'Is everything alright with your meal, Sir?' I distract him by getting him to help me pack. I've been in hospital less than a week and yet have somehow managed to accrue triple the amount of baggage I arrived with. My drugs for the next two weeks take up Dad's suitcase alone.
 |
| A little light reading |
I need to decompress before venturing back into normal life; I need an air lock, or a half way house, like a released convict. Whilst everyone else was talking earlier in the week, my big brother and I had Googled the name of the old guy from The Shawshank Redemption, the one who can't acclimatise to the outside world and ends up hanging himself. I don't want to end up like Brooks. Therefore, Dad and I decide - once I convince him I won't explode upon leaving the confines of the hospital - to head for his hotel, located, fortuitously, up the road at Bank.
 |
| Adieu, Guy's. Until tomorrow, when I come back for clinic. |
Once there, Dad sets me up in a comfy chair, hands me InStyle and turns on Radio 3. We listen to choral music and I read an interview with Drew Barrymore. I am superlatively happy.
It is time for my inaugural shower. After twenty heavenly minutes, I have clean hair. I peel off the dressing and inspect my new scar properly in the mirror: it is long, running from my pubic bone up towards my left hip, but it is very neat and the surgeons glued it together so it should heal nicely. That's right, they glued it. I am a Prit Stick and a few sneezes away from internal haemorrhage. I don't care about the scars, really. I have a few now, but by the time I've acquired one it is too late to do anything about it, they are permanent whether I want them or not. They are a map to my history.
 |
| Clean hair. IT'S JUST SO CLEAN. |
 |
| My digs for the afternoon |
In the evening, I am finally ready to go home. This might just be the scariest bit of all, because my life came to a dead halt at the exact same time the previous week: I dropped everything and ran, and now it is time to pick everything up once again. The bins need to go out, the gas bill needs to be paid and I have an essay due in two months. Christmas is six weeks away. Now it begins.
Now it begins.
***
Coming soon - The Phone Rings Part III: The Final Instalment. Will I set myself on fire, left at home alone? Will life ever be the same again? Will the gas bill get paid? Stay tuned.....
Comments
Post a Comment