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It was on my third hospital admission in March 2020 to Ninewells Hospital in Dundee, Scotland, that I knew I was, quite literally, dying to live. I was one of the first patients to become seriously ill in wave one. Progressively, over several days before my final admission, I had been struggling to breathe, and despite oxygen therapy I was a deteriorating patient and my body was being ripped apart by COVID. A chest X-ray was taken during that night and the Consultant had told me that I had pneumonia. I knew he was concerned. Later during that night, I had an out of body experience where I was looking down on my lifeless body below. At the morning ward round, I asked the doctors to save my life and I was then whisked round to the intensive care unit, anaesthetized and put on a ventilator. Little did I know what was to unfold.
My wife and my family were buoyed initially that I was stable, but within a few days, things took a turn for the worse and I crashed into critical illness. Although COVID had not in the end killed me outright, I was now fighting for life as I was in multi-organ failure. My lungs were only operating at 5% of due to the extent of the pneumonia. The intensive care team knew that I was in dire straits, along with so many other patients. They had been holding daily online meetings with the extracorporeal membrane oxygenation (ECMO) centres around the UK and as a 49-year-old, it was deemed that I should be given the chance of survival.
ECMO is life-support treatment for patients who are suffering from the most severe forms of either heart or lung failure. In my case, it was needed, as even the conventional ventilator was not adequately oxygenating my blood. The logic was that by bypassing my lungs, they would have the potential to recover, but it was a last resort. For patients like me who were in respiratory failure, the ECMO machine bypasses the lungs by removing blood from the large veins, passes it through an oxygenator (removing carbon dioxide at the same time) and pumps it back into the patient. Despite the addition of anticoagulants, the blood needs to pass through various filters to prevent micro-clots damaging fragile organs. It is a delicate procedure and Amanda was informed that half of all ECMO patients die, and very few make a good recovery.
A retrieval team came from Aberdeen and I was taken to one of the operating theatres and a line was placed into each of my femoral veins and a third line through my right jugular vein into my right atrium in preparation for the ECMO treatment. I was put on a portable ECMO system and transferred the 72 miles to the Scottish ECMO Centre in Aberdeen Royal infirmary. I was now on a heart–lung bypass machine and needed kidney dialysis. I suffered several pneumothoraces and needed a chest drain each time. My liver was failing and there was evidence of a small brain haemorrhage on a CT scan. I suffered sepsis from Pseudomonas on several occasions, and was allergic to each and every antimicrobial, including the end-stage antibiotic, vancomycin. However the biggest concern was that my lungs were not making any recovery and every time the phone rang, Amanda knew it would be more bad news. This was it, the final gamble. Fortunately, a course of high-dose steroids paid off, and on day 39, I was able to lift a finger and open my eyes on command from the nurses. No one was more overjoyed than my wife, Amanda who had religiously video-called me every day and had talked to me endlessly. She and the rest of my family had been amazed by the support of our family and friends, but also the dental and orthodontic community who had sent cards, letters, gifts, flowers, written poetry and songs, with other friends sending regular voice messages and praying endlessly for me. There were activities going on in every continent purely for our support. Day 42 marked another milestone when the steroids appeared to be having a positive effect and the ECMO treatment along with the sedation were reduced and stopped. I was given a tracheostomy and put on a conventional ventilator again and it appeared that I might just be able to stay alive. Nobody knew if I would lead an independent life again. I was transferred back to Ninewells Hospital in Dundee for the long journey of recovery and rehabilitation to begin.
I started to regain consciousness on day 50, but this was not a normal wake-up call. I had a variety of wild and upsetting dreams and paranoid delusional thoughts into the bargain. On occasions I was in a jungle with a variety of animals surrounding me and torturing me, particularly a python that would slide down from the trees above me to wrap itself around my chest to try to kill me. At other times I dreamt I had been involved in the Brink's-Mat robbery at Heathrow Airport in 1983. The radio played constantly in the background and when I was semi-conscious, I was aware of the soothing music, but each news bulletin carried details of the George Floyd murder in Minneapolis, USA. While dreaming, I was George Floyd and the nurses were kneeling on my neck and trying to kill me. I could not speak, but eventually realized that these disturbing thoughts were not normal. Each day, the ventilator support would be gradually turned down and I would have to work harder just to breathe. Some days were harder than others, and on many occasions I wanted to give up. I had been dying to live but at this point death seemed an easier way out.
The doctors, nurses and rehabilitation team were fantastic and dedicated so much time to me, telling me what had happened in little chunks of information each day. The rehabilitation team worked tirelessly with me. The dietitians had been feeding me with a nasogastric tube that became blocked on day 78 and the only way forwards was either to re-site the nasogastric tube or for me to start a 3000-calorie/day diet. By this point in time, I had lost 26 kg, was a shadow of my former self and for the first time in my life, food was a chore. Speech and language therapy had initially provided me with a communication alphabet board. Spelling out even the simple words such as pain, drink, sleep was tiring. Later on, a voicing tablet was provided, but by the time I mastered this, the tracheostomy had been deflated and I had started to whisper some early speech. The occupational therapists and physiotherapists had been mobilizing my hands, arms and legs while I was in my coma and their input was to step up as I regained consciousness. The occupational therapists helped me with some initial hand control. After several weeks I was able to remember the pin number to unlock my phone and sent my first text to Amanda. With the daily input of physiotherapy helping me to practise sitting on the edge of the bed and gradually putting weight through my weakened legs, I was able to stand for 2 seconds on day 86.
I was then transferred to a respiratory ward, and the rehabilitation stepped up. I would go to the physiotherapy and occupational therapy gyms in the hospital three times per day and, on day 96, I finally learned to walk again. I had asked one of the physiotherapists to record these early steps on my mobile phone, but something went wrong with recording and we had to repeat the whole exercise! The occupational therapists were fascinated by the detail involved in orthodontics and provided me with a bespoke series of exercises to help me regain some of the manual dexterity that I would need to return to work and undertake the tactile nature of orthodontics. On day 107, my lungs had recovered to 55% of their pre-COVID capacity, the oxygen therapy was finally stopped and I was finally free of all cables, pipes and lines entering my body. I progressed from a machine to help me walk, through to various frames and eventually to a walking frame and then to a walking stick in preparation for discharge from hospital.
I finally walked out of the hospital on day 128 and returned home to the family I had not seen for nearly 4 months, but was not ready to return to my life as a consultant orthodontist. I was still extremely weak and required several further months of rehabilitation, gym work, cardio work and general conditioning in order to function reasonably normally. As I transitioned back to work, I was fortunate to have a very supportive team of colleagues and they provided me with all sorts of physical and moral support, as well as practice materials to use at home in preparation for returning to work. They sent me orthodontic models to practise the fundamental skill set that I would need to undertake some basic fixed appliance orthodontics. My clinical and managerial colleagues also helped with the cognitive aspects and, while my mind was initially not very sharp, they provided me with additional time and space to make clinical judgements with support and guidance. I was glad to be back with the team that I knew so well, and I was amazed at how much concern my patients had for me while I underwent extensive rehabilitation. They were more than just the crowd, they knew the story from the various newspaper articles, TV and radio interviews and social media releases that had been published. My patients were interested in me and wanted me to recover fully. I had never appreciated that our patients are often concerned for our welfare.
As I write this editorial, 2 years on from very nearly losing my life to an infectious respiratory pathogen, I reflect that in dentistry, we have learned a lot from the COVID pandemic and I for one will not be taking any risks with protecting my now irreparably damaged lungs. I am left with chronic neuropathic pain and arthritis, none of which I would have expected to suffer in my lifetime. These are to be overcome, and I will not succumb to their effects on my body. The rehabilitation team joked with me regularly in hospital that our story would make a good book, so Amanda chronicled our journey, ‘Dying to Live’. The book contains the whole story from diagnosis through despair and into the survival phase during ECMO and in intensive care. We showcase the amazing work of the rehabilitation teams who gave us the determination to carry on and, with the devotion of so many people in the NHS along with family and friends, I reached the destination of returning to clinical orthodontics. We hope you find our book an interesting read and we hope it will help give anyone facing the same journey, the strength to carry on even on the darkest days.
Dying to live: The Story of Grant McIntyre, Covid's Sickest Patient by Grant and Amanda McIntyre is published by Tippermuir Books Ltd (www.tippermuirbooks.co.uk) and is available direct from the publisher and from all major bookstores.