key: cord-1038508-jy63ifxp authors: Gupta, A. title: COVID‐19 and extracorporeal membrane oxygenation: experiences as a patient, general practitioner, wife and mother date: 2021-05-18 journal: Anaesth Rep DOI: 10.1002/anr3.12120 sha: 2a0ff54e60914672465e756649bb148e783acc47 doc_id: 1038508 cord_uid: jy63ifxp I contracted SARS‐CoV‐2 early in the first wave of the COVID‐19 pandemic in the UK and, following nine days of mechanical ventilation, was one of the first few patients to be accepted for venovenous extracorporeal membrane oxygenation. I remained in hospital for 150 days, 34 of which I spent with full extracorporeal respiratory support. I have no recollection of my time on extracorporeal membrane oxygenation, but liberation from it was not the end of my story; I had to overcome numerous physical and mental challenges during recovery and rehabilitation. I hope my story is read by others who are recovering from COVID‐19 or critical illness more generally, and that it provides hope that the challenges of rehabilitation can be overcome. This reflection is a personal view of my illness as a patient. In it, I focus upon the aspects of my care that I can remember, predominantly around the time I became unwell but also during the recovery and rehabilitation period, which remains ongoing despite my discharge from hospital and subsequent return to work as a general practitioner. The COVID-19 pandemic was declared on 11 March 2020 when there were just 456 confirmed cases in the UK [1] . Although I remain uncertain about when and how I became infected with SARS-CoV-2, my role as a frontline healthcare worker no doubt placed me at high risk of exposure [2] , at a time when little was known about the virus or what its impact might be. I am a full-time general practitioner, as is my husband, and we have a daughter who, when I became unwell, was 18 months old. I probably contracted SARS-CoV-2 towards the end of March 2020, around two weeks following my 40 th birthday. This report is written seven months following my discharge from hospital and, except for the clinicians' perspectives (Table 1) , is based on my experiences and information passed on to me by my husband and clinicians who cared for me during my illness. To my knowledge, this manuscript is the first patient perspective of COVID-19 pneumonitis and extracorporeal membrane oxygenation (ECMO) to be reported in the medical literature. experienced visual hallucinations of a black-winged figure everywhere I looked. I remember seeing that my peripheral arterial oxygen saturations were 80%, despite the high concentration of oxygen I was receiving via facemask. I was visited by a critical care consultant soon thereafter and he explained that I needed to be transferred to the intensive care unit (ICU) for tracheal intubation and mechanical ventilation. This would require a medically induced coma and there was a chance that I may not survive. My worst fears were coming true. I telephoned my husband and asked to see our daughter on a video call as I thought that I would never get to see her again. I feared that I would never get to fulfil the dream that my husband and I had of living into old Table 1 (a) Clinician's perspective: a brief description of events following referral to the extracorporeal membrane oxygenation (ECMO) service and during the course of ECMO. (b) ECMO Director's perspective: a reflection on the challenges facing those charged with delivering ECMO for patients with COVID-19 during the pandemic in the context of this case. A 41-year-old general practitioner of South East Asian ethnicity and a body mass index of 40 kg.m -2 was referred for VV-ECMO on 8 April 2020. Nasopharyngeal swabs confirmed the presence of SARS-CoV-2 by polymerase chain reaction. Mechanical ventilation via tracheal tube had been commenced on 4 April, following failure of high concentration facemask oxygen therapy. She was known to have mild asthma but was otherwise fit and well. She had poor lung compliance and required a plateau pressure of 32 cmH 2 O to achieve a tidal volume of 365 ml in the supine position. Her PaO 2 was 9.0 kPa with a F I O 2 of 0.8, and her PaCO 2 was 8.5 kPa, with a pH of 7.45. She had previously responded to trials of prone positioning. The consensus was that she would be a candidate for ECMO, but the treating team agreed to try another trial of prone positioning to which she responded positively. However, on 13 April she developed critical hypoxaemia (PaO 2 8.9 kPa and PaCO 2 of 14.8 kPa, despite an F I O 2 of 1.0; respiratory rate of 30 breaths per min; inspiratory/expiratory pressures of 30/12 cmH 2 O; tidal volume of 300 ml). The treating team were advised to consider a trial of inhaled nitric oxide, and the decision to institute VV-ECMO was made following further deterioration. I inserted a 23-Fr drainage cannula in the right femoral vein and a 21-Fr return cannula in the right internal jugular vein, and VV-ECMO was established uneventfully. Echocardiography demonstrated an underfilled left ventricle; mild left ventricular hypertrophy; a dilated right ventricle with mild to moderate impairment; mild tricuspid regurgitation; and no regional wall motion abnormality. Her tidal volume on rest ventilation settings was approximately 30 ml. There were a number of problems during and following ECMO. These included: bacteraemia; severe pulmonary hypertension; cytomegalovirus reactivation; hyperinflammation requiring high-dose steroid therapy; respiratory weaning with a tracheostomy; and thromboses of cannulated veins. Furthermore, she suffered a cardiac arrest six days following decannulation from ECMO due to a pulmonary hypertensive crisis during inhaled nitric oxide weaning. This case, early in the COVID-19 pandemic, was a source of reflection and learning for my colleagues and I, not only in terms of the clinical management of COVID-19 and ECMO, but also regarding how best to communicate remotely with relatives during a pandemic, and how we can best enable recovery and rehabilitation following a long run of ECMO. Deciding who gets ECMO has led to some challenging times over the course of the pandemic. Was this the correct use of what was going to prove to be a limited, precious resource -an ECMO bed? Our ECMO runs were proving to be very longmonths in some cases. Weighed against the average ICU length of stay for urgent, life-saving cardiac surgery of 2-3 days, who should have that ICU bed? More nurses are required for ECMO (1.5 nurses per patient as opposed to the usual 1:1 in ICU). Is this right in a pandemic when resources are stretched already? Extracorporeal membrane oxygenation is an exaggerated microcosm of the everyday decisions that all intensivists face with respect to which patients should have access to a finite resource. Candidacy for ECMO support largely hinges on two factorsreversibility and disease severity. We can keep someone with severe COVID-19 pneumonitis alive with ECMObut will doing so save a life? Early in the pandemic there was little in the way of disease modifying treatments. So, did we just need to 'keep patients alive' while time did the healing? Yes and no: with very few clinical features to help us distinguish which patients were in which group, some deteriorated very rapidly and did not survive; many just remained on mechanical ventilation, stuck; however, a proportion of patients improved. This is where 'time on a ventilator' plays a role in determining reversibility. Pre-COVID-19, we knew that much more than a week spent receiving mechanical ventilation before initiation of ECMO meant that a patient's chance of weaning was significantly reduced. Was this true of COVID-19 patients too? All ECMO centres had abundant referrals of young patients with single-organ failure, gradually worsening after days of prone positioning. Did they all warrant ECMO? Given that the incidence of ECMO-related intracerebral bleeding appeared to be higher among patients with COVID-19, it seemed unwise to proactively start ECMO for patients who weren't critically hypoxic. hospital stay including pulmonary emboli [4] ; pneumothoraces [5] ; pulmonary hypertension [6] ; secondary sclerosing cholangitis [7] ; and liver abscesses [8] . A major challenge was weaning from the ventilator, as my respiratory muscles were weak due to many reasons including the severity of the disease and the long period of ventilatory support that I received. A prolonged ICU stay goes hand-in-hand with other problems. My generalised muscle atrophy was marked: I had to learn how to sit upright, stand, and be able to walk a few steps, like a baby in their first year of life. I could not feed myself, brush my teeth or hair, wash myself or even hold a pen. I had to be moved by hoist for two months despite being completely awake and alert. Eventually, I mustered the physical and mental strength to be able to pull myself to a standing position using a patient transfer aid; it took a further few weeks for me to progress to taking my first few steps. I learned that one can certainly not underestimate the vital role of physiotherapy following critical care. When I was weaned from sedation, I was alarmed to find that I had no voice. It was so distressing that I could not communicate. My laryngeal structures were oedematous due to prolonged tracheal intubation [9] . The speech and language therapists provided me with placards to help me communicate simple messages, but this proved difficult as my hands were so weak and I could not point to the correct box. It was frustrating at times not to be able to communicate effectively. I was initially fed with a nasogastric tube. Once the speech and language therapists determined that my laryngeal oedema had reduced, my ability to swallow was assessed; it was necessary for me to commence oral intake with pureed food initially before gradually progressing to food of normal consistency. I also experienced altered taste and smell, and oversensitivity in my throat which meant that I thought food was getting stuck. Seven months following my discharge from hospital, my recovery is by no means complete [10] . I have significant changes to my lungs. It remains unknown whether these changes are reversible. I still get breathless, but this is improving and my exercise tolerance is increasing. I was suffering with significant pains in multiple joints for many months. I feel this may well be what others have described as 'long COVID'. However, this is also improving as I become fitter and more active. My liver function is settling but is not quite normal. My mental health is much better: I try to keep a very positive outlook on life, and I feel like I have been given a second chance. It has given me immense joy, satisfaction and a sense of achievement to be able to tell the tale of my battle with and to have my story read by others. Writing this marks the one year anniversary of when I became severely unwell. I hope this report will raise awareness and give hope to others that one can have a good outcome despite such critical illness. World Health Organization. WHO Director-General's opening remarks at the media briefing on COVID-19 -11 Assessing risk for healthcare workers during the covid-19 pandemic Delivering extracorporeal membrane oxygenation for patients with COVID-19: what, who, when and how? Pulmonary embolism in patients with coronavirus disease-2019 (COVID-19) pneumonia: a narrative review Pneumomediastinum following intubation in COVID-19 patients: a case series Pulmonary hypertension and right ventricular involvement in hospitalised patients with COVID-19 Secondary sclerosing cholangitis in critically ill patients: a rare disease precipitated by severe SARS-CoV-2 infection Liver injury during highly pathogenic human coronavirus infections Laryngeal oedema associated with COVID-19 complicating airway management Covid-19: the challenge of patient rehabilitation after intensive care Published with the written consent of the patient, who is also the author. I thank the staff of Wythenshawe Hospital for the outstanding care that I received during my illness.