Tuesday 19th June
I barely know where to begin.
After almost three and a half years on The List, after almost four and a half on dialysis, my phone rang. I had lived out this moment in my head countless times, but in the early hours of last Friday morning I finally received a call from one of the surgeons at Guy's: "We potentially have a kidney for you," said Georgius in his jauntily accented English (I would take a punt on Greek). You could tell from the way he spoke that he was smiling. "Ohmygodohmygodohmygod," came my eloquent reply. After we discussed some semantics, I hung up and flew down the hallway to scare the shit out of Maisy by bursting into her room and announcing the news. I'm glad I did though, because it was she who booked a taxi, level headed to the last, whilst I flapped around in my bedroom throwing random items into a bag and haphazardly applying Laura Mercier eyebrow pencil. Then I rang my family, waking them each up in turn: first, my mother, who picked up straight away and was as incredulous as she was delighted; then my father, thousands of miles away in Dubai, who answered on my second try; my little brother had to ring me back. My older brother was in Italy and it was only by trying his girlfriend that I managed to get through and pant the news down the phone. None of us really knew what to say; I stressed that there was every chance it might not work out, and told them I would be in touch as soon as I had anything further to impart. I was still on the phone when Maisy called up the stairs to say the taxi had arrived. Georgius had told me to eat something as I would be nil by mouth once I arrived at the hospital, so I grabbed the last of my home-made shortbread (which, I should say, was AWESOME) and we ran out into dark, wet night.
Despite our taxi driver's callous insistence at stopping for red lights, we made it to the hospital in fifteen minutes, then ran (unnecessarily) into the foyer like Anekka Rice and announced (melodramatically) to the security guard that I had been called for a transplant. He unlocked the door that granted us access to the lift and then rode up to Richard Bright ward with us, presumably to make sure we didn't steal a pensioner or egg the cardiovascular ward. Apart from some incessant coughing coming from the darkened bowels of the men's bay, RB was quiet, and the nurses were at least expecting me, which made a pleasant change from some of my previous experiences.
The waiting commenced. Maisy and I sat ourselves down in front of the linen cupboard - a decision that proved poor, at night, on a geriatric renal ward: let's just say the nurses required frequent access to fresh bedsheets. We were waiting for the on-call doctor, who turned out to be a) forty minutes late and b) twelve years-old. But even at 2 am in the gloom of a hospital ward Maisy clocked Dr Tom's aesthetic appeal. He took a quick medical history, then defied my toddler-esque hissy fit to put in a canula with a remarkable lightness of touch. After draining me of an armful of blood, he disappeared to send the samples off to the lab for cross matching.
My mother arrived not long after, bless her, and the three of us continued our sojourn into the wee hours. Before long, Georgius appeared, dressed in the pink surgical scrubs that I hoped might soon be spattered with my blood. He looked very positive, and started to explain what we were waiting for: in an hour or so, he said, we would know whether the donor organ was viable; it was still at the other hospital being tested (and presumably still resident inside the donor, who I could only picture in my head as a male in his mid-forties). Should it prove so, the next step would be cross-matching: this would take up to six hours, and would constitute the more complex task of the night as, having had both a transplant and previous blood transfusions, my own cross-match is quite specific. When Georgius left, he took part of my cheery, Blitz spirit with him. It dawned on me just how precarious this whole situation was, and the likelihood of my reaching the operating theatre suddenly seemed very remote. The adrenaline that had carried Maisy and I across London three hours ago was starting to wear off and I became aware of how tired we all were. But there was only time for a few tears before Kind Nurse ushered us off to another ward where a bed was waiting for me.
Dorcas was a respiratory ward, so with (hospital) gowns to the left of me, and ex-smokers to my right, here I was, stuck in the middle with two (other people). It was now about 4 am, and with the other patients steadfastly asleep, Mum, Maisy and I huddled around my bed playing a hastily invented game entitled, "What's your favourite..." The premise of the game was simple: one person suggested a category, and then we all named our favourite item therein. Example: "What's your favourite crisp flavour?" prompted salt & vinegar from Maisy; my own (and clearly the most rational) prawn cocktail and Mum's controversial cheese and onion (the lack of sleep was obviously getting to her). We played for about 45 minutes; it was an odd choice of jape, really, considering that I had been nil by mouth for about four hours and was now hallucinating about spagetti hoops on toast and liquid of absolutely any variety. We were only interrupted by a nurse arriving to perform an ECG of my heart. This should have taken about 5 minutes, but he could not get the fucking machine to work, and after about 7 attempts, was clearly on the brink of defeat before he noticed our iphones lying on the table. Apparently they had been jamming the machine's signal, so Mum and I sheepishly pocketed them whilst we all tried to ignore the NO MOBILES sign on the opposite wall - the one that said NO MOBILES and had a picture of a mobile with a GIANT RED LINE THROUGH IT.
Dawn was beginning to break across the London skyline, so obviously this meant it was time for Mum and Maisy to leave. I should make it clear that this was in no way their decision; though my mother calmly but firmly made her case to stay, the nurses were equally adamant that they needed to go and they were expelled to the relative's day room, lured by the promise of coffee and an edition of the Daily Mail from three days ago. Left to my own devices, and unable to sleep, I plugged in my laptop and settled down to the latest episode of Silk because nothing quite sets the scene for a potential kidney transplant like a spikily edited legal drama. And sometimes Rupert Penry-Jones takes his clothes off.
As appealing as RPJ was, my solitude gave me time to reflect on what might be happening at the other end of this process. Whilst my family was vibrating with hope, another family, somewhere else eniterly, was likely being swallowed by grief. A night with the potential to be one of the best of my life might well turn out as the worst of someone else's. It was not pleasant to feel I was benefitting from a death; it felt like I was pillaging, like a particularly perverse sort of shadenfreuder. This was never the way I had wanted it, ever. These words do not do justice to the wide and complex range of feelings I felt about my donor that night, but gratitude was the one I felt most acutely.
At 6 am, Georgius pulled back the curtain and said, "I'm sorry I don't have good news for you." I had to get him to repeat it, because Maxine Peake had been giving her closing statement, and I had only caught the, "good news for you bit"...but his non-verbal communication (his emoticon would have been a sad face) was fairly clear. He said that the kidney hadn't been viable, but couldn't give me much more information, so from this I deduced that either the kidney itself had not passed muster, or perhaps there had been an additional medical problem with the donor. I hurried away from Georgius, only concerned with getting to the day room to be with Mum and Maisy. I promptly burst into hulking, undignified sobs that gradually turned into ire when Gerogius came in and told me to, "cheer up" because I was now at the very top of the list and could expect another, more fruitful, call from then any day. "Even later today," he chirruped - a galling prospect, I must confess. I toddled off to get my canula whipped out, then Maisy, Mum and I staggered out into the early morning air. Passing the commuters making their way into work was a surreal experience: you are just starting your day, I thought, with no idea of the lifetime the three of us have just lived. Maisy jumped on the tube to head back home whilst I persuaded my poor mother - whom I doubt could have wanted anything less, bar a elbow in the tits - to take me out for scramble eggs and smoked salmon (BOTH firmly on the banned food list, so a gastronomic two-fingers up to kidney failure and all her delights).
Friday 22nd June
It has now been seven days since I received The Call, and several since I began writing this post. It has been one hell of a week. I cannot let my phone out of my sight, and because as it turns out most of my trousers do not have pockets, I have taken to simply walking around holding it in my hand like an iTalisman; I have also relocated our landline into my bedroom. I have stopped taking the tube because being out of signal makes me panic, and I have given up drinking for fear of being drunk and un-transplantable when the next call comes. Do not underestimate my relief and joy at being Top of the Ops (thanks for that nifty phrase Heidi) after so long...but it does present its own unique challenges. It has been somewhat of an arduous time. There are issues with my blood pressure and potassium levels that threaten to de-rail any potential surgery, and it is proving quite a job to get them sorted - the hospital is operating within its own clunking, unhelpful bureaucracy. And with a transplant now possibly in sight, it makes all those things I so desperately want - a career, stability, normality, some nuts - so tantalisingly close and yet still just out of reach. Finally, and this will come as little surprise to those of you who know me well or indeed, have seen me recently...there is some stuff going on with my eating habits. This is not the place to go into detail, save to say I am trying to get it all under control and get fit and healthy for the next time the phone rings. Who knows what's going to happen next, when it will happen, or how; it will be helpful to have a bag already packed, but I doubt I shall ever be truly prepared.
(Me, circa 4 am, absolutely not about to have a transplant):
I barely know where to begin.
After almost three and a half years on The List, after almost four and a half on dialysis, my phone rang. I had lived out this moment in my head countless times, but in the early hours of last Friday morning I finally received a call from one of the surgeons at Guy's: "We potentially have a kidney for you," said Georgius in his jauntily accented English (I would take a punt on Greek). You could tell from the way he spoke that he was smiling. "Ohmygodohmygodohmygod," came my eloquent reply. After we discussed some semantics, I hung up and flew down the hallway to scare the shit out of Maisy by bursting into her room and announcing the news. I'm glad I did though, because it was she who booked a taxi, level headed to the last, whilst I flapped around in my bedroom throwing random items into a bag and haphazardly applying Laura Mercier eyebrow pencil. Then I rang my family, waking them each up in turn: first, my mother, who picked up straight away and was as incredulous as she was delighted; then my father, thousands of miles away in Dubai, who answered on my second try; my little brother had to ring me back. My older brother was in Italy and it was only by trying his girlfriend that I managed to get through and pant the news down the phone. None of us really knew what to say; I stressed that there was every chance it might not work out, and told them I would be in touch as soon as I had anything further to impart. I was still on the phone when Maisy called up the stairs to say the taxi had arrived. Georgius had told me to eat something as I would be nil by mouth once I arrived at the hospital, so I grabbed the last of my home-made shortbread (which, I should say, was AWESOME) and we ran out into dark, wet night.
Despite our taxi driver's callous insistence at stopping for red lights, we made it to the hospital in fifteen minutes, then ran (unnecessarily) into the foyer like Anekka Rice and announced (melodramatically) to the security guard that I had been called for a transplant. He unlocked the door that granted us access to the lift and then rode up to Richard Bright ward with us, presumably to make sure we didn't steal a pensioner or egg the cardiovascular ward. Apart from some incessant coughing coming from the darkened bowels of the men's bay, RB was quiet, and the nurses were at least expecting me, which made a pleasant change from some of my previous experiences.
The waiting commenced. Maisy and I sat ourselves down in front of the linen cupboard - a decision that proved poor, at night, on a geriatric renal ward: let's just say the nurses required frequent access to fresh bedsheets. We were waiting for the on-call doctor, who turned out to be a) forty minutes late and b) twelve years-old. But even at 2 am in the gloom of a hospital ward Maisy clocked Dr Tom's aesthetic appeal. He took a quick medical history, then defied my toddler-esque hissy fit to put in a canula with a remarkable lightness of touch. After draining me of an armful of blood, he disappeared to send the samples off to the lab for cross matching.
My mother arrived not long after, bless her, and the three of us continued our sojourn into the wee hours. Before long, Georgius appeared, dressed in the pink surgical scrubs that I hoped might soon be spattered with my blood. He looked very positive, and started to explain what we were waiting for: in an hour or so, he said, we would know whether the donor organ was viable; it was still at the other hospital being tested (and presumably still resident inside the donor, who I could only picture in my head as a male in his mid-forties). Should it prove so, the next step would be cross-matching: this would take up to six hours, and would constitute the more complex task of the night as, having had both a transplant and previous blood transfusions, my own cross-match is quite specific. When Georgius left, he took part of my cheery, Blitz spirit with him. It dawned on me just how precarious this whole situation was, and the likelihood of my reaching the operating theatre suddenly seemed very remote. The adrenaline that had carried Maisy and I across London three hours ago was starting to wear off and I became aware of how tired we all were. But there was only time for a few tears before Kind Nurse ushered us off to another ward where a bed was waiting for me.
Dorcas was a respiratory ward, so with (hospital) gowns to the left of me, and ex-smokers to my right, here I was, stuck in the middle with two (other people). It was now about 4 am, and with the other patients steadfastly asleep, Mum, Maisy and I huddled around my bed playing a hastily invented game entitled, "What's your favourite..." The premise of the game was simple: one person suggested a category, and then we all named our favourite item therein. Example: "What's your favourite crisp flavour?" prompted salt & vinegar from Maisy; my own (and clearly the most rational) prawn cocktail and Mum's controversial cheese and onion (the lack of sleep was obviously getting to her). We played for about 45 minutes; it was an odd choice of jape, really, considering that I had been nil by mouth for about four hours and was now hallucinating about spagetti hoops on toast and liquid of absolutely any variety. We were only interrupted by a nurse arriving to perform an ECG of my heart. This should have taken about 5 minutes, but he could not get the fucking machine to work, and after about 7 attempts, was clearly on the brink of defeat before he noticed our iphones lying on the table. Apparently they had been jamming the machine's signal, so Mum and I sheepishly pocketed them whilst we all tried to ignore the NO MOBILES sign on the opposite wall - the one that said NO MOBILES and had a picture of a mobile with a GIANT RED LINE THROUGH IT.
Dawn was beginning to break across the London skyline, so obviously this meant it was time for Mum and Maisy to leave. I should make it clear that this was in no way their decision; though my mother calmly but firmly made her case to stay, the nurses were equally adamant that they needed to go and they were expelled to the relative's day room, lured by the promise of coffee and an edition of the Daily Mail from three days ago. Left to my own devices, and unable to sleep, I plugged in my laptop and settled down to the latest episode of Silk because nothing quite sets the scene for a potential kidney transplant like a spikily edited legal drama. And sometimes Rupert Penry-Jones takes his clothes off.
As appealing as RPJ was, my solitude gave me time to reflect on what might be happening at the other end of this process. Whilst my family was vibrating with hope, another family, somewhere else eniterly, was likely being swallowed by grief. A night with the potential to be one of the best of my life might well turn out as the worst of someone else's. It was not pleasant to feel I was benefitting from a death; it felt like I was pillaging, like a particularly perverse sort of shadenfreuder. This was never the way I had wanted it, ever. These words do not do justice to the wide and complex range of feelings I felt about my donor that night, but gratitude was the one I felt most acutely.
At 6 am, Georgius pulled back the curtain and said, "I'm sorry I don't have good news for you." I had to get him to repeat it, because Maxine Peake had been giving her closing statement, and I had only caught the, "good news for you bit"...but his non-verbal communication (his emoticon would have been a sad face) was fairly clear. He said that the kidney hadn't been viable, but couldn't give me much more information, so from this I deduced that either the kidney itself had not passed muster, or perhaps there had been an additional medical problem with the donor. I hurried away from Georgius, only concerned with getting to the day room to be with Mum and Maisy. I promptly burst into hulking, undignified sobs that gradually turned into ire when Gerogius came in and told me to, "cheer up" because I was now at the very top of the list and could expect another, more fruitful, call from then any day. "Even later today," he chirruped - a galling prospect, I must confess. I toddled off to get my canula whipped out, then Maisy, Mum and I staggered out into the early morning air. Passing the commuters making their way into work was a surreal experience: you are just starting your day, I thought, with no idea of the lifetime the three of us have just lived. Maisy jumped on the tube to head back home whilst I persuaded my poor mother - whom I doubt could have wanted anything less, bar a elbow in the tits - to take me out for scramble eggs and smoked salmon (BOTH firmly on the banned food list, so a gastronomic two-fingers up to kidney failure and all her delights).
Friday 22nd June
It has now been seven days since I received The Call, and several since I began writing this post. It has been one hell of a week. I cannot let my phone out of my sight, and because as it turns out most of my trousers do not have pockets, I have taken to simply walking around holding it in my hand like an iTalisman; I have also relocated our landline into my bedroom. I have stopped taking the tube because being out of signal makes me panic, and I have given up drinking for fear of being drunk and un-transplantable when the next call comes. Do not underestimate my relief and joy at being Top of the Ops (thanks for that nifty phrase Heidi) after so long...but it does present its own unique challenges. It has been somewhat of an arduous time. There are issues with my blood pressure and potassium levels that threaten to de-rail any potential surgery, and it is proving quite a job to get them sorted - the hospital is operating within its own clunking, unhelpful bureaucracy. And with a transplant now possibly in sight, it makes all those things I so desperately want - a career, stability, normality, some nuts - so tantalisingly close and yet still just out of reach. Finally, and this will come as little surprise to those of you who know me well or indeed, have seen me recently...there is some stuff going on with my eating habits. This is not the place to go into detail, save to say I am trying to get it all under control and get fit and healthy for the next time the phone rings. Who knows what's going to happen next, when it will happen, or how; it will be helpful to have a bag already packed, but I doubt I shall ever be truly prepared.
(Me, circa 4 am, absolutely not about to have a transplant):
Comments
Post a Comment