They say that drowning is a peaceful way to die. That’s a lie!
I have felt my lungs will with water. Felt the weight on my chest as I clutch for air and life. There was nothing peaceful as I gasped for breath: it was the most desperate, lonely and fear-filled moment of my life. But I was not drowning at sea or in a pool. It was my own body producing the fluid that filled my lungs. I was drowning myself.
In 2011 following a serious accident I acquired Acute Respiratory Distress Syndrome (ARDS). ARDS is one of the most severe complications caused by Covid–19, and early estimates show it could affect perhaps 1 in 100 people with the virus. ARDS kills 30% to 40% of the people who get it. Survivors require weeks of mechanical ventilation in the hospital and lots of help in recovery. And even those who survive often have to deal with prolonged rehabilitation. As many as a third of ARDS survivors can never return to work, and there are high rates of depression, anxiety, and post-traumatic stress disorder.
Most people don’t know about ARDS but in the coming months, it will become far too familiar. In the majority of cases of COVID–19, the patients who die have ARDS. Italy’s experience shows that demand is likely to be high for ventilators. Many patients will need the machines for 10 to 14 days and some will need them longer. Patients spend an average of 25 days in an intensive-care unit. Already difficult decisions are being made there about who can get the potentially life-saving ventilators and the UK is desperately trying to increase their production to meet the quickly growing need.
We are growing familiar with the increasing numbers of death globally each day. Yet still, there are those who say it is nothing more than the flu. So what is it like to have ARDS? In 2011 I contracted ARDS and spent 46 days in an ICU (Intensive Care Unit). Whilst the cause of my ARDS was not COVID–19, the experience of fighting to breath is the same.
In 2011, whilst working as a photographer in Afghanistan I stepped on an IED (Improvised Explosive Device). I lost both my legs and my left arm in the explosion.
After three days in Afghanistan, I was stabilised and flown back to The Queen Elisabeth Hospital in Birmingham, UK, where I spent the next month and a half in Intensive Care. During that period I underwent numerous surgeries and my body struggled to cope with both the trauma and the infections that ran through my body. At one point these infections pushed my temperature so high that it seemed multiple organ failure was inevitable.
I was conscious for much of the 46-day period, though in various states of awareness caused by the heavy use of morphine and sedatives. However, the experience is etched on my mind, in a way that’s hard to explain. There are still nights when I wake and try to pull imaginary tubes from my throat, and the experience of my lungs failing me, the shortness of breath, is a trauma that will stay close for the rest of my life. As well as my own recollections of that period, I also have a diary that my sister, Sarah, kept. In the account, I’ve used her words to describe what was happening when I was in an induced coma.
For it was my family that really bore the brunt during my time in Intensive Care. Sarah and my brother David gave up work and family to be by my bed throughout. Without them, I don’t believe I would have made it. One of the most distressing things about those with ARDS caused by COVID–19, is that their families can’t be there with them. It’s unimaginable suffering for both the patient and their loved ones.
Day 18 in Intensive Care I was struggling. Sarah, my sister, said I looked shattered and I felt it. I simply had nothing left to give, each breath felt like its own battle. I have never felt so exhausted in my life and yet there was no sign of a finishing line. I could feel my lungs filling with fluid. I was gasping, gurgling, for breath. The doctor gave me a choice: 1. Keep on as I was but run the risk that I’d have to have a tube put down my throat as an emergency procedure if I grew anymore tired. 2. A different type of oxygen mask that was more like a hood 3. Be put to sleep, have a tube down my throat and be kept sedated.
He favored the last, he felt things were starting to get tricky and likely to get worse, he was concerned that I was getting too exhausted. If I kept fighting it as I was, he feared my body may just collapse before they could ventilate me. But he was blunt: if I was put on the ventilator and into an induced coma there was a strong possibility I would never regain consciousness.
I’m a fighter. My whole life I’ve pushed myself to life limits. My instinct was to keep fighting, yet I knew this was a battle I was losing. In the end, it was my sister who whispered in my ear; “It's ok. You have to let them take over. You’ve done all you can.” Her words somehow reduced my burden and I nodded. I chose option 3. Still, though there was part of me that felt like I was failing, that I was giving up, but I had nothing left to give. My sister noted in her diary ‘you were nervous’ and I was, I was terrified.
It’s strange, but despite the seriousness of my situation, it was one of my most lucid days in Intensive Care. I remember it too clearly. Once I made the decision to be sedated and ventilated, it was a time of calm, yet tempered with the knowledge something terrible was coming. There’s a scene in the film a Perfect Storm where the crew of the fishing vessel Andrea Gail finally breaks out of the storm that’s held them You can see their relief as the darkness parts to reveal the dawn's light. Salvation though is fleeting; the storm won’t let them go it claws them back into its darkness and death. It’s as if that last glimpse of hope was just to tease them, to make their fate that little more despairing.
Lying in my bed that day I felt like that crew. I’d been through so much, had fought with all I had and today was able to sense the world around me and communicate in a way I hadn’t for weeks. Yet I knew I was about to be sucked back into the dark night.
My Dad came and sat with me for a while and then my sister took over. She read me letters from friends; I remember tapping the side of my bed, getting to read them over and over.
My breathing was harder than ever, I felt as if some weight was upon my chest, suffocating me. My lungs were filling with liquid, I was drowning in my own blood and fluids because my lungs are so full. I was hyperventilating, gasping for air like a fish that just been pulled from the sea and flung onto a boat deck. Surrounded by loved ones, I fought for each breath but felt I was being suffocated. My eyes pleaded for somebody to end this.
I thought about saying goodbyes but couldn’t bring myself to do it. In my mind, there was no doubting this could be the end. I tried to seem positive and forced smiles, but I felt I was betraying everyone by giving up and choosing to be sedated. I knew though that my conscious mind could battle no more, I could only hope the doctors, nurses and my body could carry on the fight for me and possibly by being asleep, I would be able to rally my last reserves. Something inside me knew the worst was to come, that my body was about to be pushed to its very limit, but after three weeks of battling, I doubted there was anything left. Despite all that had gone before I can honestly say I have never been so truly scared in my life as in those hours leading up to my sedation as my breathing grew harder and my focus on the world around me softened
“I asked if you wanted to hear anyone’s voice when you went to sleep, you said you were fine. So I had to leave when they were ready Wasn’t allowed back till about 4.30. You have given everyone a scare. Apparently, your lungs are filled with oxygen, then an anesthetic is given, then they do the tube. But during the procedure, something happened, and your oxygen levels plummeted to nothing, everyone was pretty panicked. I’ve been assured all is ok, but we’re back to the waiting game, back to just being able to sit here and read the monitors. There’s nothing we can do. You’ve caused me a lot of panic today and I left to go home feeling very disturbed. David is with you. Oh boy, this could be a long haul.”
Day 19 “Spoke to David on the phone, things seem to have stabilised a little, but still very ill.”
Day 20 “Oh dear Giles, you’re really struggling. I was back in London when at 4 o’clock David rang to say I should come, things were bad, and we should all be there. Rushed home from Tesco, Jan took me to the station. Made it to Birmingham in 3 hours. Kept shouting at you all the way on the train. Feeling very angry. Dad arrived 20mins later. Andy Johnson was there and explained what was happening. You’d taken a downturn and were no longer able to breathe on the normal incubator; they’ve put you on an oscillating machine (A High-Frequency Oscillation Ventilator, that pumps air into your lungs more aggressively). On top of that, your kidneys have started to fail and so are now on a dialysis machine that is also cooling your blood. You weren’t getting rid of enough CO2, so blood becoming acidic, kidneys not functioning. Though as usual, you surprised everyone, by producing urine despite being on the machine!
In fact, Andy said you’re a tough guy, they found it hard to fully sedate you as you kept fighting and had to stop you breathing for yourself by paralysing the chest muscles so the machine could take over. We’ve been told bluntly that at this stage some people will pull through and some will die. We’re all here with you. All we can do is wait”
Somehow, I survived.
On Day 30, 12 days after I was first ventilated, the tubes were pulled out.
At one point, during the two weeks, I’d been in a coma, when normally ventilation methods weren’t working, they’d put me on a high-frequency oscillating device that forced air into my lungs. Normally this is used for a few days, I spent eleven days on it, my chances had been close to zero. Yet somehow my body had to keep going and eventually the grip ARDS had on my life loosened.
But the challenges didn’t stop there. Now off the ventilator, I struggled to breathe. It was as if I’d forgotten how to. I remember feeling like I was being suffocated with a pillow, but I couldn’t open my lungs to suck in the air. It’s the strangest feeling, somehow I have forgotten how to breathe.
The nurses and doctors were encouraging me to breathe deeply, but for all my effort, nothing happened. In the end, my oxygen level dropped so low that they had to do a tracheostomy. It’s when they cut a hole into the front of your neck and insert a breathing tube directly into your windpipe to help you breathe. It meant I couldn’t speak. I remember crying at that point as I felt so helpless, unable to do anything to prologue my own survival. My fight was still in the hands of the doctors and nurses.
But there is nobody I would rather entrust my life to than that group of doctors and nurses. Intensive Care is relentless; it’s a 24-hour fight, and that’s what they did: they fought for my life. With every drop of energy and ingenuity they had. In the end, I was in ICU for 46 days. I would spend nearly another year in the hospital. It was a tough year, but I was alive.
The military has a saying that was often used in reference to my case “hurry up and wait.” When I spoke to one of the surgeons who saved my life in 2011, Shehan ‘H’ Hettiaratchy, who this morning they used the same phrase when talking about their preparations at London’s imperial college for the mass Covid–19 patients they expect to see in the coming weeks.
“Actually,” he said, “it feels like going to war.”
He should know, he’s done two tours in Afghanistan and worked in Kosovo and Chechnya.
In the coming weeks, many are going to go through the same experience I did with ARDS. It breaks my heart to know that those going through it won’t have their families with them. Most of all right now I’m thinking of the team that worked so tirelessly to save my life and wonder how they will deal with the weeks ahead. They will because they are selfless, professional and true heroes; but it will push them to their limits. Mentally and physically medical staff are going to take a beating. They need all of the support we can give them.
I wasn’t sure about writing my own experiences. To be honest I didn’t want to relive them. But a doctor asked if I would, in the hope that maybe one more person realises the severity of what happens, that realises that this is not the flu, who understands how their actions could cause this suffering. So I’ve written as honestly as I could it that hope. And as some small thanks to the team that saved my life.
I know it’s in people’s instincts to fight, to feel they are actively doing something when faced with a crisis like Coronavirus; but now is not that time. Our time will be when this is over, and we have to rebuild. For now, we have to stay at home. It’s that simple. It is in our power to cut the number of people who will get ARDS, it is in our power to give some respite to the incredible NHS staff. We owe it to them.
If you could save somebody from drowning, wouldn’t you? If staying home means one person doesn’t have to go through this, isn’t that a price worth paying?
Giles Duley, March 24, 2020
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