Long Covid: ‘I’ve blood clots, a braced leg and damaged heart… but I’m home’
For 88 days, former BBC journalist Bill Wilson lived a nightmare, trapped behind a plastic facemask and plugged into a life-support machine. Months on, as life in the UK begins to get back to normal, he’s still battling the effects of Covid-19.
“Do you feel better now daddy?” my five-year-old daughter asked, as I hobbled into the house, metal walking stick in hand. “Did you like your big sleep in hospital?” she added, as I finally returned home after three grim months fighting a near-deadly bout of coronavirus. The big sleep she meant was the month-long induced coma I’d spent on a life support machine, battling the biggest sleep of all, from which no-one ever really recovers.
The stick was a reminder that the virus had ravaged me from head (brain seizure) to toe (dropped foot). Coronavirus had blitzed my respiratory system. I had suffered blood clots and a massive pulmonary embolism in my lungs, plus severe Covid-19 pneumonia. Two-and-a-half stones in weight (16kg) had fallen away from me – mostly muscle – leaving me barely able to walk.
It was hard to believe that just 12 weeks earlier I thought I was suffering no more than a seasonal chest infection, and that a few days in hospital on oxygen would see me right. But that optimism turned into a nightmare spun out over 88 days from late November to late February. “You were very, very critically ill,” my wife tells me now, “the normal respiratory ventilator was not working for you.” Coronavirus hits less than 1% of sufferers in the devastating way it affected me.
“My desperate journey actually began in the preceding 10 days, inside the intensive
care wards at West Middlesex University Hospital, where it became apparent
my infection was not getting better.”
The reason I am here writing this is thanks to the skill and dedication of NHS staff – and because I was considered suitable for life-saving treatment on an Ecmo machine. Ecmo – or extracorporeal membrane oxygenation – has variously been referred to as the last chance, last ditch, and end-of-the-line for severely ill coronavirus patients. If my machine had not been available to help me breathe during the onslaught of Covid pneumonitis, there is a strong chance I would have died.
When nothing else would work, the machine replaced the function of my damaged lungs. It pumped blood from my body to an artificial lung, which added oxygen and removed carbon dioxide; it then sent the blood back into my body via a pump, with the same force as the heart. There are only six Ecmo centres in the UK – two in London, including the Royal Brompton Hospital, where I was treated.
My desperate journey actually began in the preceding 10 days, inside the intensive care wards at West Middlesex University Hospital, where it became apparent my infection was not getting better. The wards were filled with men in their 50s, like myself, all gasping for air and staring silently into one another’s terrified faces. It was the most frightening period in hospital. It took a concentrated mental effort to suppress a rising sense of panic, clamped inside my full-face plastic mask.
One patient was wheeled in during the middle of the night shouting through his own mask that he was going to die. I awoke from my disturbed sleep to the sound of cleaning machines in the corner where his bed had been but was no longer. I still can’t be sure if he passed away or not.
Shortly after, I was proned – laid on my front – in an attempt to get more air naturally into my lungs. I coughed up blood clots. No matter how hard and rhythmically I breathed I felt I was only holding my own, not improving. In my wallet I found a small drawing of a flower by my daughter and I gripped it until it grew soggy and finally disintegrated.
Snakes and ladders
It seems that my condition deteriorated in just one day. The last thing I remember at West Middlesex was seeing a large number of medical staff dressed in blue PPE, and being told I was to be sedated in order to be put on to an Ecmo machine.
Unbeknownst to me, a call had gone to my wife informing her I was not responding to conventional ventilation. As they assessed whether I was suitable for Ecmo, they asked her questions about my general health and fitness levels. When they decided I was suitable she said it had felt like “winning the lottery”.
But the battle was actually just beginning. While I was unconscious, a specialist ambulance came to collect me for transfer to the nearby Royal Brompton. For the next month I would play a life-and-death game of snakes and ladders – climbing up one day, sliding back down the next.
By Christmas Day, it looked like I was recovering, but a few days later I suffered a seizure, my eyes turned downwards, and my face started twitching. My devastated wife was told that I may have suffered a stroke, and no-one knew what damage my brain may have sustained. In addition, I suffered a massive pulmonary embolism, and blood clots had to be skilfully removed on two separate occasions by a radiologist.
Meanwhile, I was living in a parallel universe of coma nightmares. They were often adventures from a thriller movie – escapes from crumbling old houses, sinister cults, the mafia, even hospital wards. I did a lot of driving while I was unconscious – up and down the UK, from London, to Newcastle, to Glasgow and back to London, where I was chased by a gang of sabre-wielding Hells Angels. There was space travel. I thought I was in Yuri Gagarin’s capsule Vostok 1.
While I was unconscious I had the only visit allowed during my entire three-month hospitalisation. My wife, clad in protective clothing, was allowed to come to the unit to see me. She still finds it too upsetting to talk about.
After being on the machine for a month, allowing my lungs to repair themselves, it was deemed safe to bring me around again. But there were complications – something I also have no memory of. My blood pressure shot dangerously high. In a bid to coax me back to mental normality, medical staff handed me a long letter my wife had written to tell me what had happened in the preceding weeks. They stuck a picture of her and my daughter above my bed to jog my memory.
‘Blessing the boats’
But I experienced more delirium while being weaned off oxygen. I thought I was in a hotel room in Birmingham for the Rugby League World Cup – an event not taking place until later this year. No games are being played in the city. One night I thought the nurses had put on a strange and fascinating multi-media art show. Another time I thought I was sleeping in a castle. My mind was almost new-born.
A member of the medical staff mentioned a poem, called Blessing the Boats, by African-American writer Lucille Clifton, which optimistically reads: “May you in your innocence, sail through this to that.” She said it had been a comfort to her in treating very ill patients. Another drew my attention to the painting Death and Life, by Gustav Klimt, to illustrate how seriously-ill patients waver for a time in the thin gap between the two.
As my brain started to rewire, I felt an urge to draw, something I had not done since school days. I produced two shaky drawings, one a view from the ward window and another of the view from my hospital bed. Attempting to stand up again was agony. It took me three days to merely stand upright, and only then with the assistance of a large frame device to lean on.
I spent just over a week at the Nightingale Hospital, at the Excel Centre in east London. It was opened in a blaze of publicity last year to deal with emergency Covid cases, but this year turned into a rehab centre. When I finally returned home, a new phase of my battle began.
Relieved to be alive
I am now under the care of a wide-range of medical departments, from many hospitals and health centres. I have thick blood clots in the right hand side of my heart, which it is hoped can be dissolved with blood thinners. The left side of my heart is not pumping at full capacity.
My right lower leg remains in a brace and I still walk with the assistance of my stick. My memory remains foggy. What I now recall is built up from a combination of what people tell me, old texts and emails, talking to medical professionals, and what returns in the form of flashbacks.
“What have you learned from it all?” a nurse asked me at a recent hospital appointment. That would take another essay to cover fully. But my overwhelming feeling is relief at being alive and an awareness of the fragility of life, I have no idea why coronavirus hit me so hard. I have controllable asthma but nothing serious enough to have been one of those advised to shield in early 2020.
Now, as I sit on the sofa, helping my daughter complete her world flags sticker book, I am reminded of all the medical staff from around the world that cared for me. From all parts of the UK, Republic of Ireland, France, Italy, Spain, Portugal, Greece, Poland, Romania, Russia, Thailand, the Philippines, South Korea, China, India, Australia, Nigeria, South Africa, US, Jamaica, and more.
I salute them, as well as my steadfast family and friends, as they are the heroes of this tale.