life

Sepsis Confidential: 3

Interlude

So how did I get there, to Terapia Intensiva in Policlinico Umberto I?

Trastevere. 29 December 2018.

On our first morning in Rome, while most of the family were still in bed, I took the short walk from our Airbnb to the Basilica of Santa Maria in Trastevere. I’ d last seen it on my honeymoon in 1992. I sat on a pew and – since you never know when it might come in – made a phone recording of the ambience of the church, with its other visitors and a Kyrie piping through speakers. In the portico, I looked, without understanding, at Latin and Greek on bits of stone, stuck to the wall like a ransom note from the past.

Not that I needed one. Over the next few days we paid our dues to the city’s imperial and ecclesiastical history. Back then, I had no thoughts about joining them in the past tense. We went to the Pantheon. We passed a colonnade just as a light show projected images of Emperor Hadrian and fire and ivy and described how these pillars ceased to be part of the Temple of Hadrian and became the facade of the Rome Chamber of Commerce. Santa Maria Maggiore – where Pope Francis was buried in 2025 – was the first of the churches. We ended up in St. Peter’s Square more than once. Winter sun or evening spotlights contrasted sharply with dark archways and even darker skies. Between times, we simply walked, ate our favourite foods and spoke to street cats. Christmas had been messy and fragmented but now this was our time together as a family: a refresh before returning to work or study.

On Facebook, on the last day of 2018, I posted this:

Hmm.

Later that night – doing as Romans do – we climbed up Janiculum Hill. From the top we would see the New Year fireworks explode all over the city. We came to some steep steps: no problem for P and A – our sons, (25 and 21) – or our daughter, F (17), and not much for L. After too many years carrying too much weight and smoking too many roll-ups, it was more daunting for me, but entirely manageable, albeit with some breathlessness at the end.

Except that the breathlessness didn’t wait until the end. Less than halfway up, I was gasping for air and had to stop. I was embarrassed by my lack of condition – I planned to clean up my act in 2019 – but a recent bug had left me with some bronchial soreness, so I put my frailty down to that. I chose to be unconcerned.

After resting for a few minutes, I was able to finish the climb and enjoy the view with the New Year crowd. Getting home afterwards was entirely downhill.

On New Year’s Day, we strolled along the west bank of the Tiber in glorious, warm sunshine and the incident on the steps was entirely forgotten. We visited the Roman Ghetto, ate slices of pizza in the Jewish Quarter and looked across the city from the absurd monument to Victor Emmanuel II. It was a good start to 2019, but I went to bed with slight intimations of a cold.

The next morning the ‘cold’ was still there, but undeveloped, little more than an off-taste in the mouth. Nothing to stop me going to the Vatican as planned.

Each photo I took that day is not simply an image but a souvenir of my declining physical state. There’s one of an Argentina football shirt in a glass case – No. 10, of course – given to Pope Francis by Diego Maradona. The time stamp is just after 2pm: at this point the ‘cold’ was coming out. Just after 3pm, I snapped the bronze peacocks in the New Wing: I was thinking flu or virus instead of cold but tried to remain interested in my surroundings. And at around 4.20 pm, there are a couple of shots of the ceiling of the Sistine Chapel.

They are bad pictures: they prove that I was there and nothing else. Because this is when things began to go wrong. My symptoms – mainly aches and fatigue – were within normal experience but I felt ill and overwhelmed. There were too many people around me. Above me, too many colours and too many stories. I was in a sacred hall of European culture and it was giving me the screaming abdabs and I couldn’t wait to leave. But I had to stay awhile – I’ d been here before but my kids hadn’t – so I scanned the ceiling, looking for God and Adam to give me a fixed point.

When we were moved on, the Matisse Room was a huge relief. Right then, I took the simple lines of the La Vierge à l’Enfant over Michelangelo every time.

In St Peter’s, while my family wandered the aisles, I sat in the Marian chapel and listened to the choir. I closed my eyes and breathed deeply for about fifteen minutes: not prayer but total retreat. Thereafter, I gathered myself sufficiently to do as visitors to the Basilica do. Was the Pietà always behind glass? I took a good team photo of the family looking happy and well.

Outside again, the winter air brought some relief. And I hoped that food would help too. But in a trattoria that evening, I managed a little red wine and a few bites of sausage and lentils before I was overtaking by violent and over-productive coughing. I went back to the apartment, leaving the others to try to enjoy their dinner.

In bed, with a fever developing, I still thought this was just a bug. We were due home tomorrow evening. I would rest, all day if needed, then dose up on paracetamol before getting onto the plane. But F felt strongly that I should not fly. By morning – after a feverish night and waking up in sweat-soaked sheets – everyone agreed with her. L called Andrea*, our host, to extend our stay for a few more nights. She would stay with me but the kids would fly home as planned. 

While the family went out to the Forum and the Colosseum, I got up to let my sheets air. Another bout of coughing and retching brought up yellow phlegm and streaks of red. Traces of last night’s wine, I told myself. The routine switches between hot and cold continued, only this time, the cold part was something I’d never previously experienced. The family returned to find me wrapped in my overcoat and scarf, huddled next to a radiator turned up to eleven, and still shivering. I welcomed the fever when it finally returned.

It felt strange for my kids to say goodbye and head to the airport without me, but by now I was grateful I wasn’t attempting to fly. Later that evening, during a paracetamol-window, I joined L at the kitchen table and managed to eat something. After a night’s sleep, I told myself, I would start to improve. It would be OK.

Instead, there was another night of hot and cold, and some new developments. While L went out for essential supplies, I coughed or threw up more phlegm and more ‘wine’, although now I conceded it was actually blood. L returned and I threw up again: mostly on the bed, mostly blood. My left knee and right wrist were swollen, searingly painful, and I couldn’t push myself out of bed to get to the toilet.

L called an ambulance. Early on Friday afternoon three paramedics arrived. We stumbled through triage in a mixture of English and Italian. They looked at my puke, they looked at my knee, and then tried to move me. I was ill and in pain but still made room for shame when they struggled to get me off the bed and on to a trolley. They weren’t sure what was wrong, but their hunch was that I had a UTI.

The ambulance bounced and rattled along Trastevere’s cobbled streets until we made it to A & E at Policlinico Umberto I. A bored-looking nurse triaged me and we were directed to the waiting room. Even then, I didn’t think it was anything that serious. I was more anxious that I would soon need the toilet. How that would work? I lay propped up on my trolley, monitored up, and focused on slowing down my breathing,

But that was happening anyway.

We waited for about an hour. I had no real idea what my resting heart rate, blood pressure or blood oxygen should read. But there was a woman in the room who did. And she’d been watching my numbers. She came over to L to say someone needed to see me, now, and went with her to the front desk to help with the necessary Italian.

In a side room, soon afterwards, I watched the swirling monochrome patterns of an ultrasound of my chest, not knowing what I saw. A male nurse – whose white tunic matched his hair – asked questions in good English, while a younger nurse took blood samples. Her dark curly hair reminded me of L’s best friend. I told them I really, really needed the toilet. But they didn’t seem to hear me. Instead, more nurses appeared. They put me in a gown and after a false start, managed to cannulate me.

Unbidden, my bowels opened, and there was another moment of simple, childish shame. The curly-haired nurse cleaned me up, wordlessly, swiftly and with less fuss than if she’d been wiping a kitchen counter.

By now it was around 10 pm. I was wheeled into the corridor, where L was waiting for me. We hung around until the white-haired nurse came out and told her she should go home. They would phone if anything happened. If not, she could come and visit tomorrow. She let go of my hand and began to move away. Then, finally, I wondered if I was seriously ill, and I was frightened. A nearby nurse maybe picked up on this. He put his hand on my arm and said, in English: “Don’t worry. You’re going to be OK.”

And so I lay on a trolley in the corridor, while life in Code Red emergenza e accettazione passed by me and I drifted towards nothingness. Until the breathing. Until Chiara.

* * *

There’s probably too much detail here – and definitely too much information – but like the phone recording you never know when it might come in handy. And I wanted to look back at the red flags I chose to ignore for reasons mundane – not wanting to make a fuss, the sheer inconvenience of being ill away from home – and existential – to avert my gaze from mortality. Other commitments, self-doubt and procrastination have meant it’s taken too long to put this piece together. Reading the sepsis stories of Bethan James and Manjit Sangha recently gave me the prod I needed to carry on paying my dues.

Next time, I’ll return the strange world of ICU, with neither commentary nor analysis for a while.

* * *

*Andrea – name changed

Sepsis Confidential: 2

Afterworlds

My assumptions about Chiara were only the beginning of the weirdness:

Terapia Intensiva, Policlinico Umberto I, Roma. Sometime between 6 and 8 January 2019.

There is no sign of Chiara now. There are others here, too busy clearing the decks to hear me or notice my lack of water. I don’t know the purpose of their work: it could be a simple tidy-up before going home or they could be making space to have a party. After all, the ward seems festive enough, warm red and gold, as if the light has been filtered through gaudy wrapping paper. I wonder if my family will come to the party, and whether there will be dancing.

This won’t be a dancing day for me but all the same, something starts to move. It might be the bed around the ward, or the ward around the bed, but either way I seem to have turned towards a cooler, fresher place around the corner. To my left I can still make out the ward, but to the right there’s darkness with points of light, rippling like night water, as if I’m on the wharf of a marina or small harbour. There is also what looks like a passenger area, where a number of subdued-looking people sit quietly on plastic chairs, or on the floor, hugging their knees while they wait for their ferry to dock.

I don’t know how I know they are waiting for a ferry, or if I shall be wheeled over to join them. And I don’t know for where the unseen ferry is bound, although from somewhere I hear whispers of Scandinavia.

I missed the boat. And I never saw the passengers or the harbour again. Instead, I tapped in my freedom pass to return to oblivion. When I came back, I passed through a dreamscape which reunited me with L and the kids in a deserted airport terminal, in an empty café, waiting for opening time and the promise of coffee and croissants and, above all, water. And when I opened my eyes on the ward, everything had changed:

I have moved again. Or rather, the entire ward has moved, to the upper floor of an auberge or pension in Paris. The lighting is still warm, but hazier than before. Art deco fan-lamps are a new touch, along with – I think – reproductions of Baroque or Renaissance paintings on the walls. The reception area or nurses’ station is where it was in Rome, but now it‘s less austere, and people can lounge there on what I describe to myself as ‘Second Empire’ furniture. 

Chiara has also relocated to Paris. I glimpse her, but she’s too far away to hear me. But briefly, there is a new hope. After all, if this is now a pension as well as a hospital ward perhaps I will soon smell coffee brewing, even croissants. And maybe then I will get that drink of water.

I wonder if L has been told that I am in Paris, and if so, whether she will follow on by plane or, just as likely, take the sleeper from Roma Termini.

The light changes and I’m not in Paris anymore. The warmth and the fan-lamps and the furniture have gone and everything is a gloomy powder-blue and grey. The ward feels both colder and older. I‘m more aware of my bed. It’s small, and now has wooden side rails like a baby’s cot. I can’t see the other patients well but I think they are cotted too.

I try to reset myself in the bed and discover two things. One, that I can’t move. Two, that even the attempt, the merest twitch of my body, causes annihilating pain to spread from my left knee: a flashback, this, to the time before I got here.

Someone is moving past the other cots towards me. I hope it’s Chiara. Instead, a priest stands at the foot of my bed. Without speaking, he comes forward, bends over and tightly binds my wrists and arms. I remember my wedding day: kneeling at the altar with L while the golden-robed curate hand-fasted us with his stole. But this priest is in black and unlike the curate he doesn’t loosen the bind. Then he disappears into the now-dark nurses’ station.

I lie there for what seems like a long time, bound by who-knows-what, in pain, unable to move and still without water. For the first time since this started, I’m frightened.

* * *

Under major stress from medical trauma, super-strength opioids and being brought in and out of coma – my brain tried to map out its new reality. Or rather, mismapped it. This is broadly how I understand it. (I’m not a neuroscientist, but if you are and happen to read this, please feel welcome to comment and/or correct me.) Soon after I was discharged from hospital I made some notes about this time. Months later, I went back and tried to make some sense of them. In ‘reverse order’:

My fear and pain at the end of this sequence seem like the beginning of re-engagement: small steps away from the ‘Great Whatever’ towards feeling. The pain in my left knee was caused by septic arthritis, and got worse before it got better. The memory from my wedding day is accurate, and given the priest and the already noted absence of my loved ones, probably not that peculiar. Nor is it unusual to see a priest in an ICU: there could have been one at the end of my bed, although I doubt that he bound me as described. More likely, a nurse was tucking me in with my arms beneath the blankets. With the mixture of pain, loneliness and confusion it still seemed reasonable to be frightened, but in retrospect it felt less sinister than the micro-sojourn in Paris.

At the time this was just another moment in the Great Whatever, surprising but not scary. But I know nothing at all about the Second Empire, so where did the detail about the furniture come from? My only connection is to a line from a play, first seen in Oxford in 1979, when my A Level group attended a performance by another school. I’ve returned to the play since, but it is fixed in my memory mainly because I watched distractedly that evening, sitting next to a girl I was secretly in love with, and who died only a few years later.

Even in rude health, our brains throw up all sorts without cause for alarm, but the trouble with this line is that it was written by Sartre. Worse still, it’s from Huis Clos, delivered by a character (Garcin) who has just been escorted into Hell:

Second Empire furniture, I observe … Well, well, I dare say one gets used to it in time.

It’s disturbing to think you might have visited Hell: even as a tourist; even if you don’t believe in it; even if the version you passed through was mostly someone else’s. But perhaps I’d been mashing up versions of the afterlife already. I imagined being next to open water vividly – I’ve no idea if it was just any old river or the Tiber or a brackish sea. But I don’t think the downcast ferry people were waiting for the Viking Line, and no one entered Valhalla by boat. Maybe thoughts of Scandinavia sidetracked me. After all, there was that over-subscribed ferry that used to go to the Underworld …

I’ll never know. Probably the patterns I was looking for, the playing fast and loose with the afterlife, only mismap further what I was mismapping on the ward.

And there will be much weirder mismapping to follow. Next time, more from Terapia Intensiva – including the nearest thing I had to an NDE – and a little bit about the illness that put me there.

Sepsis Confidential: 1

The City Of Oblivion

As NDEs go, it was a non-event. When everything stopped on 5 January 2019 – at about 1 a.m. – I was already unconscious. My shut-down and my reboot, when medical staff worked to resuscitate me in the corridor of Emergenza ed Accetazione (A&E), both completely passed me by.

Afterwards, while the hours passed and my heart was beating anew, I rested in nothingness, until an in-breath started to suck me out of the neither-dark-nor-light:

After the out-breath I begin to hear things: gurgles, mechanical hisses and competing rhythms of breathing. One is slow, one is fast. The trouble is, both of them are mine. I fight to maintain the slow, mindful rhythm, but the faster one wins out – one-two, in-out – as if my lungs are under the orders of a drill-sergeant.

And then a voice: “The mask controls your breathing. Just give into it. Work with the oxygen.”

Who is saying this? I’m not sure. I could be talking to myself but, whoever speaks them, the words bring me back decisively from the fuck-all. First there is darkness, then light. Maybe a phosphene or two. Then this much comes back to me: I am in Rome; I am ill – I don’t know with what – and that I went to hospital. Dimly, I recall triage, a trolley and an oxygen mask.

When I open my eyes, I see a young woman wearing big Wayfarer glasses, busying herself around the bed I have little sense of but must be lying in. Oddly, I think she might be Dutch. She wears a green gown and has strawberry-blonde hair and a kind, serious smile.

And then L speaks. My wife. I can’t see her but her voice is a rare moment of clarity: “This is Chiara*,” she says. “She’s been looking after you.”

While we are agreed on the big glasses, L remembers Chiara as being blonder and wearing a white tunic. This is the first evidence of the idiosyncratic way I would process sound and vision in the coming days. Embarrassingly – and I don’t remember this – it seems I tried to say hello to Chiara in a Leslie Phillips “ding-dong” voice. Soon afterwards, I drifted off again. When I came round, both L and Chiara had gone:

Breathing is still unnatural – I’m all too aware of the ventilator and the gurgles of the oxygen tank – but it has been supplanted by a new need: water. To live I must breathe, and to breathe I must drink. I feel dry, if not cured, like bresaola. To find water, I must find Chiara, but there is no sign of her. For the first time, I look out beyond my bed.

I can’t see a hospital ward, as such, but for the first time I am aware of a bigger space. There seems to be a lot of old, dark wood, like you would find in church pews. I think I see others around me and that they, too, are sick. And I think I glimpse Chiara, tending to one of them.

And I become convinced of two things. One, we are utterly alone in our sickness. And two, that Chiara isn’t a nurse but another patient, just less unwell, and she has taken it upon herself to care for the rest of us. If we have hope, in this strange and unreliable place, then it rests with her.

* * *

Chiara was an ICU nurse, of course, and although I hadn’t figured it out then, my hydration needs were being met intravenously. After the cardiac arrest, I was resuscitated, intubated and placed in an induced coma. Briefly, I was brought out of sedation the next day, so probably this happened then. We will return to Terapia Intensiva (ICU) in Policlinico Umberto I for longer next time – but these were my first experiments with consciousness after I swapped a holiday in the Eternal City for a mini-break to oblivion.

Given that all this happened over six years ago, and it’s almost as long since I blogged (see Same geezer, different hat: After sepsis), why return to it now? Isn’t it a bit Aunt Ada Doom, reminding you that I once saw something nasty in the woodshed?

Perhaps. And those close to me could be forgiven for thinking so. There are variables to factor in such as age, cause and underlying health – but it’s generally thought that it takes a sepsis survivor at least a year to recover. I suspect I’m not the only one who read this somewhere early in convalescence and took it to mean ‘no more than a year’. In the second half of 2019, I went to a couple of support group meetings+ run by the UK Sepsis Trust. These were chaired by ICU nurses. To protect the privacy of others I must generalise but, young and old, we sat around a table to describe our experiences and the physical and emotional challenges we had faced or continued to face. These all differed from and overlapped with one other, but common to all was a sense of bewilderment behind the eyes. (Later, when I described this to a friend who visited me soon after I got back from Rome, she replied, “Yes, of course. That’s what I saw in you.”)

Some people were there barely weeks after their crises. Seven or eight months on, I was near the median. But some survivors present were anything from three to six years into their recoveries. At the time, I assumed they had come more to support others than for their own needs: sharing their experience on practical matters like managing different parts of the health system, or PIP claims, or to provide a useful outlet for the nurses when they wanted to underline a general point with some specifics. Six years on, while I still believe this, I understand that they were probably still ‘carrying’ sepsis with them, albeit in a better, lighter backpack than once they had.

March 2019, with stick and orthopaedic sandals.

Here, I can only describe my own experience. They say that scars are proof you have lived or, in this instance, survived. Well, I have two scars on my right arm that were initially black and have bleached out over time. These were from unsuccessful attempts to cannulate me on arrival at Umberto I. This is OK. Because the ends of my necrotic toes auto-amputated, my new ‘tips’ get tired and sore quite easily because they are performing functions they were never designed for. In the same way, the once-necrotic wound on my left heel, the one that took over four years to close up, also gets tired and sore sometimes, and splits once in a while. And this is OK. I still have occasional moments of brain fog (i.e., more than usual) and days of seemingly random fatigue. These, too, are OK. More unsettling are the little things that only capriciously prompt fear or anxiety: a smell of rubber or silicone that suddenly reminds me of an oxygen mask; feeling chilled; the little scratchy feeling at the back of the throat at the start of a cold; a particularly dark December night; TV images of hospitals or of the city of Rome.

I should stress that this is all entirely manageable. I’m not saying “Poor me” here, just that I still ‘carry’ sepsis with me, and see those ‘old-timers’ at the support groups now in a different light.

After one of the meetings, I fell into conversation with one of the Trust nurses. First, I told him how well I’d been cared for at Umberto I. He said that to bring me back from meningococcal sepsis meant they clearly knew what they were about. I went on to tell him that I had feelings, not of guilt, exactly, but of ‘survivor-pressure’, of a need to pay some dues. He replied – from his perspective as an ICU nurse – that given I looked so well and was living my life meant I was already paying them.

This was the kindest thing he could possibly say. All the same, the taxman in my head still drops by whenever he’s passing through. I never undertook the sponsored pilgrimage I envisaged in my bed in Malattie Infettive (Infectious Diseases) one January afternoon in 2019 – a reminder, this, that our expectations need constant surveillance and occasional pulling in for questioning – but I did a month of sponsored dog-walking with our beloved springer spaniel – now passed – last year.

Now, the taxman is back again. He’s reminding me that a doctor in Rome once said I was the luckiest sepsis patient he’d ever seen. And this is why I’m reviving my very-long-dormant blog.

To begin with – because they are strangely precious to me – I’ll focus on the hallucinations, dreams and delusions from those early weeks, and that brief period when I lived in a bi-polar universe, flitting between the coherent world of my family, and the parallel, often paranoid, telenovela world of the hospital, all based on what I thought I heard – in a language I don’t speak – in the corridor outside my room. Why those particular hallucinations: when ICU was sometimes a ward, or a Paris hotel, or a Soviet spacecraft? Why did a doctor’s smile frighten me so? Why were Queen performing live behind a curtain? Why was a nurse leading a sex and death cult on the ward? And why on earth did I call that nurse ‘Henry’?

I can’t possibly repay for all the work of health professionals in Italy and the UK, or the love and patience of my family and my closest friends. And I can’t pretend that what follows isn’t part of my own interminable rehab. But if anyone reads this, or subsequent posts, and at the very least feels some fellow feeling is going their way, then maybe I’ll have begun to pay some of those dues.

This is me, having a go.

* * *

* Chiara is the first of a few changed names to come.

+ As well as providing support for sepsis survivors, these meetings are also intended for those caring for a survivor, or grieving for a loved one lost to sepsis. In my own case, my family essentially transplanted themselves to Rome for a month, creating chaos not only in their emotions but in their work and study too. There is a substantial parallel story to be told here, only it isn’t mine to tell.