What it REALLY means to be an ‘ICU Survivor’

For the first time, a huge number of us, more than ever, are experiencing what it is like to be a patient on the Intensive Care Unit (ICU).  Very ordinary people living very ordinary lives, healthcare workers, keyworkers, mothers, fathers, daughters, sons, are all experiencing it, and COVID19 is not discriminating between any of us.  Many people have lost their lives to COVID19, and many people willlose their lives to COVID19.  But there are also many people who will pull through this dreadful virus, and go onto leaving hospital and returning home to their life, work and families.  But right now, what we’re not talking enough about amongst all the COVID19 ‘miracle stories’ is what it trulymeans to “pull through” and “survive” the ICU, and what it truly means for patients once they no longer require that acute care.  Nobody is talking about the after-effects that live on far longer than the virus itself.  Surviving the Intensive Care Unit is not always a triumph, a victory, a revelation.  Surviving the Intensive Care Unit can be traumatising, cumbersome and heart-breaking too.  Hence, this is a story, a plead, to you all, from personal experience.  If we don’t start having the conversation now, we are very likely going to run into a lot more problems further down the line, even when, and if, COVID19 clears up and we all return to our lives as normal. 

     The first time I came across the phrase “ICU survivor” wasn’t after my first admission to Intensive Care, or second, or third even.  The first time I really considered what it meant was after my tenth ICU admission, because that was the admission that I “pulled through” by the thinnest of all the threads I’d hung on.  I spent three weeks on life support, ravaged by sepsis, pneumonia and respiratory failure.  It was unclear whether I’d make it home outside of the wooden box, tracheostomy consent forms were filled, and family were told to expect the worst.  The detail of the illness and the admission itself are irrelevant here – it’s what I eventually brought home with me afterwards that we all need to talk about. Throughout my admission, I suffered hideous delirium, that still, to this day, I have difficulty in recalling and describing.  The combination of infection, drugs (sedatives, antipsychotics etc) and the very strange and unfamiliar environment of the ICU sent me hanging off the edge of buildings for weeks, trapped in the crumpled wreckages of burning plane and car crashes.  It had me convinced that I was part of a scientific experiment where doctors had removed all my organs and were controlling my brain, I saw myself going through my own funeral, laid out in a coffin where everything around me turned a cold and deathly white.  I no longer recognised my parents, I had no knowledge of what year we were in, that I even hada sister at all, let alone her name, nor could I speak or put the jumbled words in my head to speech.  I just stared blankly at everyone and everything, trapped in an immense pain of fear inside my own mind and body.  

    I came home and I was reunited with my family.  But returning to everyday life – medical school, studies, sports, social activities, has never been the same since. For the first month back on placement as a medical student, my Mum had to tie my shoelaces every day because I was too weak to bend down.  My athletic self, having competed on both the GB Swimming Team and GB Skiing Team in the past, had now dwindled to four matchsticks as limbs, and I trembled even picking up a simple mug to make a cup of tea.  And although, two years on, I am much stronger than what I was back then, I still struggle to walk a basic ten minutes down the road.  I use perch stools in the kitchen because I can no longer stand to prepare food over long periods, I use a bath-board in the shower because I tire easily from washing my hair, and sometimes, on the really bad days, I have to crawl up the stairs on all fours.  And I am only 26 years old.  

    Perhaps the worst long-term after-effect I suffer from, following that Intensive Care admission is the PTSD and the flashbacks.  Vivid flashbacks of reliving those burning, crumpled plane wreckages wake me up most nights, leaving me tired, half-functioning and lacking in sleep during the day.  Having had a further seven ICU admissions since, the delirium comes back and I’m further haunted by even more flashbacks of death, people coming out to kill, and I can no longer cope being a patient on a medical ward, the sounds of bins slamming and machines beeping startling me that I sob quietly into the pillow, terrified that nobody would really understand if I tried to explain to them why I am so scared.  And it’s not just whilst I am that patient that I’m affected by all this – I tune into those same sounds and startles on the ward rounds as a medical student too, but I stand there quietly at the end of the bed, trying desperately hard just to focus on the teaching and my peers around me.  The real symptoms are often invisible to everyone else.  The overwhelming fatigue countless ICU admissions have left me with has also become debilitating to the everyday routine.  The tiredness I now experience is on a level that none other of my young, active, outgoing cohort see. Temporary damage to the vocal chords whilst placed on the ventilator has meant I since haven’t been able to return to singing in the Healthcare Choir where I was a happy, team-playing soprano, and I also continue to experience more strange, and less reported symptoms, such as the inability to control my own body temperature as I shiver to put the heating back on in the very height of a hot summer.   

    Nobody tells you any of these things when you leave the ICU. All that everyone else focuses on is the fact that it is a miracle you’ve made it out alive.  They cheer you and hug you and then you return to how things used to be, as everyone else also go about their seemingly normal day to day lives.  But, things never completely go back to normal afterwards.  Consequently, you end up sitting there, stuck in a rut and unsure what to do with yourself.  You start questioning what has happened, what is happening, and what is going to happen. But once you are out of the ICU and no longer hanging by the thread, it is not uncommon to feel completely alone and without anchor.  You have no designated service or person to turn to.  

    I was very fortunate to receive follow-up care with the help of an ICU psychologist, plus the warmth and kindness of a patient support group, where other ex-patients of the ICU come together and talk about their experiences in order to help others, as well as themselves, rationalise all the events and emotions collectively.  Last year, I took up an individual research project on an interest close to my heart – the psychosocial recovery of ICU patients.  I found that 68.2% of patients who had received psychological support post-ICU, such as through follow-up services and patient support groups, were significantly less distressed after 1 year.  It was promising evidence that patients who had experienced an ICU admission could benefit from this kind of support beyond the acute care within the ICU.  But, to my frustration, both for myself and for my fellow patients, most hospital trusts currently do not have enough resources to fund these vital services, therefore these patients won’t have the opportunity to seek help and recover fully in the longer run.  In many ways, I hope that this, in light of COVID19 times, can be revisited and reassessed, as more of us are now experiencing the worst imaginable ourselves.  

    For me, two years still feels like yesterday.  But, attending ongoing support groups, writing about it in blogs like these, and talking about it, has helped, no doubt. And, as the dust settles, more ICU survivors will reach out over time. Many of us will write our experiences down in diaries, new books, up and coming blogs.  We will talk about it with counsellors and psychologists, other patients and their families.  Each survivor will do this at their own pace, in their own time.  I personally don’t like using the term “survivor”, because it can have me dwelling over what could’ve happened, if things had been any worse, and I don’t want to think about that, nor dream it upon anyone else either.  Instead, I want to move on and focus on living life, not just surviving it by the thin of a thread.  As we continue ploughing through these incredibly challenging and emotional times, we must know that it’s not all going to be instantly over at the end – for the hundreds and thousands that have carried the biggest brunt through all of this, it really is only just the beginning.  I completely and utterly feel and empathise with what many of you may be going through right now.  I know, for fact, that many of you may be huddled up in your own dark corners, feeling you can’t talk about ‘it’ because you feel too guilty, ashamed and frightened. But it will be okay, and I, alongside many others I am sure, are here to talk to.  We are all here to talk to, and that’s why, both during and beyond COVID19, we absolutely must start the conversation on what it really means to be an ICU survivor.  

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