I was one of the early swine flu victims at age 48 back in late 2009, that progressed to viral pneumonia and severe ARDS (Acute Respiratory Distress Syndrome). It all started with what seemed like a cold, that led to me phoning in sick to work on Friday 27 November 2009, fully expecting to be back in work on the Monday but I was never to return.
Over the following two weeks I got progressively worse and spoke with my GP on three occasions. The last time, a friend was with me who remembers me pleading for help on the phone from my doctor by saying, ‘Please help me as I feel like I am dying’. But on each occasion I received the standard NHS advice at the time to drink lots of fluids, take paracetamol (tylenol) and see how you feel in a few days time. After that last conversation, my words became prophetic, as a few days later I was on a ventilator and in an induced coma at Gloucestershire Royal Hospital’s Department of Critical Care (DCC).
I am only aware of the details of events over the following weeks because the mother of my four month old baby son kept a diary, recording my treatment and progress for the first two months of my hospital stay. She would phone the hospital morning and evening for updates and speak with my parents who remained at my side throughout and write down the conversations.
My ICU diary would later play a huge role in my psychological recovery by allowing me to fill in the gaps in my memory, filter out the false memories and create a time-line to anchor my experience in reality. I would advise anyone who has a loved one in crisis in the ICU to keep a journal or diary of events.
My parents drove the 150 miles from their home in Wales after they had been unable to contact me by phone for several days knowing I had been unwell but not the extent. They found me incoherent and struggling to breathe so phoned an on-call doctor who arranged for paramedics to take me to Gloucestershire Royal Hospital.
Within hours of admission, I was put into an induced coma and on a ventilator.
After three days of maximum vent settings and being put in the prone position, my condition continued to deteriorate. All methods of conventional treatment had been exhausted so Glenfield Hospital in Leicester were contacted to see if I would be a suitable candidate for ECMO (Extra Corporeal Membrane Oxygenation) treatment.
At the time, Glenfield was the only hospital in the UK providing respiratory ECMO for adults, with just five beds.
On day four, a bed became available at Glenfield, I passed their acceptance criteria and a retrieval team was sent to Gloucester.
The ECMO consultant explained to my family that I had three hurdles to overcome. Firstly, I had to survive the transport to Leicester, then survive the connection to the ECMO machine in theatre and finally, avoid bleeding and clotting while on ECMO. I would later fail to clear that last hurdle with the bleeding.
I was transported to Glenfield in an ambulance under blue light and with a police escort. I went straight into theatre shortly after midnight and was successfully connected to the ECMO circuit. A week later, I would receive a tracheostomy. I would continue to be placed in the prone position while on ECMO and with the trach.
Over the the following weeks, my progress at Glenfield would often be two steps forward, then one step back.
During the coma, I was trapped in a world of continuous and vivid horrific nightmares, some of them recurring, that would become my reality over the coming weeks. There was no peaceful sleep or feeling of serenity, it was just visions of pain, suffering and general mayhem. There were occasions when I would hear and recognise familiar voices talking to me but I could never place who it was or see their faces.
The ICU diary that was being kept for me would later allow me to relate many of the nightmares to procedures being performed on me. In one particular nightmare, I was being chased by gunmen shooting at me and I felt the bullets hitting and entering my body as I fell to the floor dying. I believe this nightmare was triggered by having drains inserted into both sides of my chest when I suffered a double pneumothorax. After waking from the coma, the nightmares I experienced carried forward. While lying in my ICU bed, I thought I was being treated for gunshot wounds and that my two young daughters had been kidnapped, as that was my reality in the world I inhabited during my coma, which was more real to me than the world I was now awake in.
Following the tracheostomy, my progress was hit by bleeding complications as I continued to bleed out through my neck. At the start of my third week on ECMO, I suffered a double pneumothorax that required chest drains on both sides. I was now bleeding out through all of my cannulation sites. I received a number of blood transfusions but I continued to bleed out at a rate of 300mls every 1 to 1.5 hours and the decision was taken to remove me from the ECMO circuit. I remained under observation at Glenfield for a further week before I was repatriated to Gloucestershire Royal DCC. I was kept in an induced coma for my entire stay at Glenfield so have no memories of the place or the staff who cared for me, though I do have photographs taken of me both on and off ECMO with staff permission.
I gradually woke from my coma over the following days back in Gloucester, only to enter a world of delirium and experience a distorted reality driven by auditory and visual hallucinations. Some were frightening but for the most part they were more bizarre in nature. Unfortunately, some of the doctors and nurses involved in my care entered into my hallucinations in a negative way, which made me wary of their presence for many days, until I began to regain clarity of thought.
I received passive range of motion physio during my coma, while both on and off ECMO at Glenfield but my physical rehab in earnest commenced the second day after waking from my four week coma back at Gloucestershire Royal and I can still remember the three physios who attended me. I remember it well because I was excited to do some physical exercise, as I had been a competitive track and field athlete my entire adult life. Unfortunately, I had no understanding of how de-conditioned my body had become until the physios tried to sit me up and dangle my legs over the side of the bed. It was an horrendous experience just trying to move my limbs and raise my head as the physios determined my capabilities and limitations.
I was still on the vent with a trach and from then on, after their first visit, I dreaded the sight of the physios coming down the corridor towards me over the following weeks, as I knew it was not going to be a pleasant experience.
Outside of their daily visits, I was given three simple exercises to perform while lying in bed, which I was to do several times a day. Bring my ankles together with legs outstretched and move them apart, raise my feet in turn and move them in a circle, then the hardest of all, raise my knee and draw my heel towards my backside.
As a former athlete who had competed at international level, I was used to pushing my body to the limit in training until I was throwing up or getting light-headed and seeing stars, but I have never experienced anything as physically torturous as those first couple of weeks physio rehab in the ICU as we worked to re-ignite my neuromuscular system.
By the time I was moved to the respiratory ward, I was starting to see small gains in my physical recovery and though I was far from enjoying it, I was now in the mindset to get on with it.
Due to having a tracheostomy, I was unable to talk or easily communicate which caused me a lot of frustration. My initial attempts at communicating were done by nurses trying to lip read. Words like yes and no were straightforward but stringing together more than a few words was problematic as my jaw was one of the last areas of my body for the numbness to clear up from the paralytics used to prevent me making unwanted movements during my coma, which prevented me from moving my mouth freely.
After a few days, I was able to lift my arms and point at an alphabet board to spell words but this would quickly get tiring. I could only communicate this way for a matter of minutes as my arm would soon weaken and I would struggle to point out the correct letter, with my finger hovering at the one below or to the side and the person reading would say they couldn’t understand which would often result in me giving up in frustration.
Around the same time, I began attempting to write. I still have the sheets of paper I wrote on as they were saved and incorporated in my ICU diary. I thought I was writing in perfectly clear English but looking at these sheets now I can see it was a messy scrawl, mostly unintelligible and littered with spelling mistakes. As the days passed, my writing quality would greatly improve.
My mobile phone was brought to me for the intention of messaging some friends but when the phone was placed in my hand the weight of it felt like I was holding a concrete block so we gave up on that idea.
The big step forward in my ability to communicate came with the fitting of a Passy-Muir valve to my trach, which allowed my voice to be heard. This was by far the easiest and clearest means of communication but I was only able to tolerate it for several minutes at a time and my voice was very weak, which shows the level of de-conditioning following a coma, that even a simple task like talking can be exhausting.
Two weeks after returning from Glenfield and with my recovery moving in the right direction, I was weaned from the ventilator and had my trach and NG feeding tube removed. I was ready to leave DCC and move on to the next stage of my recovery journey by transferring to the respiratory ward on the eighth floor (8b).
Eleven years on, I still have many memories from my time in DCC that I don’t know whether they are real or imagined. Clearly the terrible nightmares and extreme hallucinations did not happen but I have other memories that I discounted as being false that turned out to be true and others I was convinced were true that turned out to be false.
So unless I can relate a memory to my ICU diary or have some one who was present corroborate it, I can not truly trust my recollection of events.
With the combination of coma nightmares followed by delirium-induced hallucinations, it is unsettling to have six weeks worth of memories of a life I didn’t live. Though I know and understand these are false memories, I still have emotions attached to them due to the impact of their perceived authenticity. In the months following hospital discharge, I experienced a psychological fallout that would lead to me being clinically diagnosed with PTSD. I can still recall the nightmares with clarity and they haunted me for a long time after in the form of flashbacks.
In ICU and after moving to the respiratory ward, I was effectively an adult baby and remained bed- bound for a further two to three weeks with all my hygiene requirements and bathing being carried out by nursing staff. I also required assistance to be moved from my bed to the chair.
It was nearly two months from hospital admission before I was able to stand on my feet for the first time and start shuffling with a walking frame. Once confident with the frame, I was able to leave behind the humiliating and degrading experience of being toileted in bed and take myself to the bathroom.
Also, for two weeks after leaving DCC, I was unable to swallow solids after the removal of my NG tube so I was put on a diet of pureed meals. An endoscopy didn’t show any obvious issues but my ability to swallow eventually returned and my first solid meal for seven weeks comprising of sausage, beans and chips was simply wonderful and probably the most satisfying meal I have ever eaten. I had a photograph taken to commemorate the occasion.
I was seeing progress on a daily basis by how far I could walk with the frame. I well remember taking my first two steps, which was really little more than moving the toe line on one foot a couple of inches further than the other. Then four steps the next day, six the one after, and so on until eventually I could walk the full length of the corridor down to the ward entrance.
What mostly held me back were my respiratory issues, I wanted to do more exercise but my restrictive breathing wouldn’t allow it. For many weeks on the respiratory ward, my resting heart rate was around 130, with associated rapid and shallow breathing so exhaustion and distress would quickly set in with activity.
My physio also gave me arm stretching exercises to do during the day as my upper limbs were very stiff and tight.
As well as two secondary school daughters, I was also father to a four month old baby boy when I fell ill. I didn’t see him for more than two months as he wasn’t allowed in the ICU or on the respiratory ward so I had to wait until I was well enough to be placed in a wheelchair and taken down to a hospital coffee shop for short visits with him. Seeing him really helped with my emotional well-being as my mental health was becoming a growing problem for me.
The delight of my progress became tempered by the realisation that I was losing my hair around three months into my hospitalisation and would continue to fall out for some weeks. When I returned home, I had my hair close cropped to disguise the thinning. It started to grow back with a fine texture, a bit like baby hair but would eventually return to it’s previous fullness.
After two months on the respiratory ward, with my recovery moving in the right direction, I finally had my catheter removed and plans were being made to move me on to a rehab facility. I was told to expect to be at this new facility for around six weeks but after more than three months in hospital already, I just couldn’t bear the thought of any more time away from my children and for the sake of my psychological well-being, I requested that I go home and receive outpatient therapy. This was agreed upon and I was sent for an ECG and told if the results were good I could go home. The results were good, the ambulance staff soon came and wheeled me out to take me home.
The picture below was taken shortly after returning home. I was still transitioning from the wheelchair to walking and could only walk very short distances at this time. I didn’t have the strength to propel myself so my young daughters would push me if I needed to go to the local shops. It would be around eight months before I put the wheelchair aside never to be used again.
There can be a perception that once you are back at home, then the race is over and you won, things can return to normal. After all, the hospital wouldn’t have discharged you unless you were better. Unfortunately, for many it is just the start of the next stage of the recovery journey, as issues that weren’t really apparent while in hospital begin to manifest.
When I left hospital, I looked upon my physical restrictions as a temporary inconvenience and I would soon return to work and competitive sport. It was just a matter of time but the sooner the better. And why shouldn’t I? I had been a competitive track and field athlete my entire adult life and probably had a prior level of fitness beyond what many others who went through ARDS and ECMO did. I fully expected to have a better recovery than most and even if I didn’t return to my pre-ARDS health, I would get pretty close to it.
For a few months my recovery was progressing well, I was transitioning from using a wheelchair to walking with a stick, my pulmonary function test results were improving and I was receiving CBT and EMDR treatment to deal with my PTSD. With the support of my employer, I was making tentative plans to go back to work on a phased return which would hopefully be in the near future. But the improvements in my health began to slow down around the six month mark and I reached a plateau. I could no longer see daily or weekly progress, I was having to measure it by what can I do today that I couldn’t do one or two months ago.
My optimism was starting to wane and I was having to continually reset my goals as they drifted further into the horizon.
Around eighteen months after I last attended my work-place, the work doctor, on one of his home visits, delivered the bombshell that they could no longer wait for me to reach an acceptable level of health. My recovery had stalled and he had no choice but to recommend me for medical retirement at the age of 49
Though I knew things weren’t going as well as I had expected, having my job held open gave me a goal to aim for and allowed me to cling on to the hope that I may yet return to my pre-ARDS life. Having that goal removed came as a huge psychological blow and brought the realisation that life was never going to be the same again
My medical retirement came into effect on the fourth of July 2011, my very own Independence Day but there was no celebration. My near thirty year career in defence and intelligence was over.
This brought financial implications as my work pension and disability payments fell short of my monthly salary. I was still a single parent to two school age daughters with the same mortgage payments to be met. Huge adjustments had to made to my budgeting.
Outside of my family, I lost the two big constants in my life, work and sport. This impacted on my mental health and brought me into a continual battle with depression and troublesome thoughts. The financial worries just fed into and fuelled this negative mindset.
I have not been able to fill the void of losing my work and the physical abilities that allowed me to express my competitive nature through sport.
I learned that recovering from critical illness isn’t just about the physical symptoms. The psychological recovery can be every bit as hard as the physical recovery, more so at times and often longer lasting.
Many don’t survive ARDS or their ECMO treatment and over the years I have spoken with quite a few people who have lost loved ones or family members to it, and I never lose sight of that. But for me, surviving ARDS and ECMO came with a price, that to this day, I have never fully reconciled.
The following paragraphs detail some of the health problems I faced and how I was treated. Nowadays, these issues fall under the umbrella term ‘Post Intensive Care Syndrome’ (PICS) but it had yet to be coined when I was discharged from hospital in March 2010 and I had no hook to hang my residual physical, psychological and cognitive health issues on.
My pulmonary support continued after discharge with x-rays and pulmonary function tests at regular intervals until at around twenty months out, my pulmonologist informed me I was unlikely to see further improvement in my lung function and he discharged me from his care.
Alongside this, I was seeing a respiratory physiotherapist who encouraged good breathing practice and prescribed devices to train my inspiratory muscles.
I would be referred back at various times over the years when I suffered any exacerbations with my respiratory function.
A month after arriving home, I joined Gloucestershire Royal Hospital’s physio led weekly pulmonary rehab program, held at a local university campus gymnasium. I remained in this group for six months but I was struggling to make progress so I was switched to one-on-one neuro- physiotherapy back at the hospital for nine months. After this, I had nine months of one-on-one general fitness rehab at the hospital before finally returning to the pulmonary rehab group for another six months. In total, I remained in outpatient weekly physical rehab for two and a half years and I am grateful to the head of the physiotherapy department for persevering with me and allocating the resources to support my recovery. I entered into the program while still using a wheelchair and left it being able to walk, albeit with the aid of a cane and much improved fitness levels.
Very soon after retuning home, it became clear that I couldn’t retain information and I was having serious problems with my short-term memory. I was also struggling with concentration. My GP referred me to neurology at Gloucestershire Royal Hospital, where at my initial assessment, some physical issues, like my gait, were also picked up. I remained under the brain injury team for around eighteen months where I was taught coping strategies for my memory, many of which I still use on a daily basis eleven years later. They also diagnosed me with Meralgia Paraesthetica, which is nerve damage in my left leg, most likely a result of poor positioning while I was proned.
I found myself swamped with intrusive thoughts of my time in the ICU and the nightmares I experienced during my coma. I was slipping into the grip of depression and my GP arranged for a mental health nurse to assess me at the surgery and the result was that I was referred for CBT (Cognitive Behavioural Therapy) treatment to help process my memories. Due to demand for the service, there was a gap of a few months from referral to my first appointment so in the interim, my work doctor privately arranged weekly counselling sessions for me.
Just two weeks after starting weekly CBT, the psychologist realised that I was unable to cope with the therapy and it was putting me at risk of re-traumatising. I was clinically diagnosed with PTSD and she recommended I try EMDR (Eye Movement Desensitisation and Reprocessing) treatment instead. She referred me on but again, I would have to wait many weeks before I could make the switch. The CBT psychologist continued to see me but at a level I could cope with. Once I started EMDR, I struck up a good relationship with the practitioner and I coped much better with this therapy. I had weekly EMDR for around nine months and was taught grounding strategies for when I was discharged.
My last referral in the early days after leaving hospital was to rheumatology. Every morning, my feet would be locked and it would take some manipulation of them before I was able to stand and walk. My hands would be locked in a claw position and remain stiff and painful throughout the day, as well as other joints in my body. After suffering this for a number of weeks with no sign of any improvement, my GP referred me to rheumatology where I was diagnosed with arthritis, fibromyalgia and chronic pain. I take DMARD medication to ease the symptoms and have remained under rheumatology at Hereford County Hospital ever since and receive regular consultations.
My rheumatologist referred me to OT, who amongst other things, gave me therapy putty to manipulate with my hands every day to improve manual dexterity and stretching bands to improve strength and range of motion in my arms.
I don’t like to pin every health issue I experience on my critical illness event if there is not a clear link but further down the line I suffered detached retinas in both of my eyes. I had corrective surgery at Cheltenham General Hospital to repair them. I don’t know if it was related to my illness and treatments or just part of the ageing process but I had never had eye problems previously.
As I write this, more than eleven years after my ARDS event and time on ECMO, how I measure my progress very much depends on which direction I am looking in.
If I am looking forward, then my recovery didn’t go as far as I wanted or expected it to, not even close. I was medically retired from work and continue to live with residual physical, psychological and cognitive issues that impact on my daily life.
However, if I look back to when my twelve and thirteen year old daughters, who had been shielded from how serious my condition was, were brought into the ICU to say their goodbyes to me as I wasn’t expected to make it through the night, the weeks on ECMO at Leicester Glenfield, then months later being discharged home from hospital in a wheelchair, I think I can say that my recovery has been pretty good.
It can be easy to lose sight of your progress while focusing on your end goals and sometimes you need to look back to see how far you have travelled on your recovery journey, as it may be much further than you realise.
The picture below is taken outside the entrance to Leicester Glenfield Hospital which is home to the UK’s largest and busiest ECMO centre. I had no memory of my three week vacation there as I remained in a coma throughout. I had a burning desire to return to the hospital and see where I received my ECMO treatment and thank the staff who saved my life.
The visit took place five months after my discharge from the ECMO unit and I was still woefully underweight and my hair was thin but in the process of growing back. It was an emotional visit.
I greatly appreciate and thank everyone involved in my care at Gloucestershire Royal DCC and Leicester Glenfield ECMO unit. Due to their expertise, diligence and care, I have been able to watch my four month old baby son when I fell ill, grow into the twelve year old boy he is today. But more importantly, that four month old baby boy is growing up having his father in his life, when it seemed more likely that he wouldn’t. I owe my life to ECMO and by degrees of separation, Dr Robert Bartlett for his pioneering work on ECMO. Saying thank you just isn’t enough.
(2009 ARDS survivor and ECMO patient) Gloucestershire Royal Hospital, England Leicester Glenfield Hospital, England.