California Dreaming

16th September 2020

UK COVID Deaths - Daily 20 / Total 41,684

James Cook Hospital – Total COVID deaths – 255

All COVID cases within South Tees Hospitals Trust – 5

Like everyone else, the pandemic has put a stop to any holiday plans I had this year. I’m on leave this week but have been staying at home. I originally planned to be mountain biking in California with a bunch of friends. Given the wildfires that have been ravaging the state we may have had a lucky escape but we are still all rather despondent.

The pandemic has affected some of our group in other ways. Gary contracted COVID-19 back in March and spent seven weeks on the ICU desperately unwell with multiple organ failure. He was very lucky to survive. I have written about his experience up to the point where he was discharged home at the end of June after spending over three months in hospital. I thought I should update everyone on how he has been getting on.

Gary has now been at home for over two months. He continues to get stronger with each passing day. He has been spending most of his time following a rehab plan set by his physiotherapists and a large part of each day has been taken up with exercises. It’s easy to underestimate the amount of effort this takes when you are already experiencing the chronic fatigue that is present in all ICU survivors, especially those that have survived a prolonged COVID-19 admission. Gary needs nanna-naps during the day to avoid becoming too exhausted. His fatigue should improve over time as he gradually becomes stronger and fitter.

As a keen cyclist it was no surprise that Gary was back on a static bike within a few days of getting home. He’d stuck his mountain bike on a turbo-trainer as it was easier for him to get on and off it compared to his road bike. His balance and leg strength was still far from desirable and he initially managed a whole ten minutes whilst Jenni and the physiotherapist waited anxiously for him to fall off sideways wondering how they might explain his readmission to hospital with multiple fractures.

Following his prolonged period of intubation, Gary had been left with major swallowing difficulties. These had been so bad that he had left hospital with a Percutaneous Endoscopic Gastrostomy (PEG) feeding tube. These are feeding tubes that are inserted directly through the abdominal wall into the stomach. They allow you to be ‘tube fed’ without having to have a tube inserted in your nose and are more satisfactory when patients are unlikely to be eating properly in the long-term.

By the time he got home, Gary’s swallowing had improved to the point where he could manage to safely swallow yogurts and was told he could eat as much ice-cream as he wants. Unrestricted access to ice-cream on medical advice isn’t a diet that is recommended very often by healthcare professionals and Gary was determined to make the most of it. He was soon gaining weight at the rate of about 1kg per week and starting to look a lot better for it. He is now approaching his target weight and beginning to worry about how he’s going to kick his Cornetto habit.

The speech and language team who have been assessing Gary’s swallow had, like me, suggested that it would be many months before he could expect to eat ‘regular’ food. However, within just two months, things have improved to the point where he can now eat whatever he wants which has surprised us all. His PEG tube is scheduled for removal at the hospital next week and this is yet another major milestone on his road to recovery.

Gary still has signs of peripheral nerve damage, due to a generalised nerve weakness called Critical Illness Polyneuropathy (CIP) which affects many long-stay ICU patients. It is a poorly-understood inflammatory condition which can lead to weakness and numbness in the extremities. Gary also has suffered damage to one of the specific nerves in his lower leg causing foot drop. He has to wear a brace to keep his foot in the correct position. When wearing it he is able to walk well and has been walking distances of up to five miles as part of his exercise programme.

Another consequence of localised nerve damage was a partial paralysis of one of Gary’s vocal cords. This is another complication of prolonged intubation with a breathing tube. It has resulted in Gary having a hoarser voice than he used to but this too has improved gradually since he left hospital. To be honest it makes him sound a little bit like Al-Pacino, albeit an inferior version who is clearly lacking the Italian good-looks, talent or money.

The one problem that Gary has been suffering from is breathlessness. Shortness of breath following a long ICU stay is pretty common and breathlessness following a serious COVID-19 infection is almost de-rigueur at the moment. There is growing concern that many patients are still experiencing breathing problems months after their initial infection has run its course.

There are many potential mechanisms and causes of this shortness of breath. Lung inflammation that occurs during COVID pneumonitis may persist and ultimately become fibrosis or scarring. Damage to the elastic-like tissue in the lungs may cause widening of the airways, predisposing to the build-up of excess mucus and a tendency to recurrent infections (a condition called bronchiectasis). Finally, damage to the blood vessels in the lung can cause resistance to the flow of blood through the lung and lead to heart failure (a condition known as pulmonary hypertension).

As well as the effects of the infection itself, the act of mechanically ventilating the lungs in an ICU patient can cause damage due to the high pressures that may be necessary. Oxygen toxicity may also play a role in damaging the lung in such patients. The damage causes inflammation which ultimately may contribute to lung fibrosis.

Studies have shown that COVID-19 survivors may be left with persistent x-ray and lung CT scan changes after many months. The worry is that this represents persistent inflammation that could subsequently become permanent fibrosis. Given that COVID-19 is an entirely new infection, the significance of these changes is not yet understood but we can look to patients who have been in similar situations in the past. The SARS epidemic in 2003 was caused by the first known example of a new coronavirus infecting humans. Fifteen year follow-up of healthcare workers that who had been seriously ill with SARS pneumonitis showed that they too had persistent x-ray and CT changes that were compatible with fibrosis. However, after a year, there had been significant improvement in many patients. Testing showed that their lung function had definitely deteriorated but that, for most, this deterioration had been relatively mild. It was also difficult to correlate these changes with the patient’s ability to function on a day-to-day basis. It was felt that some of the breathlessness they were experiencing was due to other factors such as muscle weakness.

Gary is breathless when he exercises and also has persistent lung changes on CT scan. He is due to see the respiratory team at the hospital for an assessment soon. It is not quite three months since he has left hospital and despite his general improvement, there are still many reasons why his cardio-respiratory system is not yet functioning as it used to. Fatigue and breathlessness can be caused by muscle weakness, systemic deconditioning and reduced cardiac performance as well as residual lung problems. Recovery from any prolonged ICU admission can take up to a year or longer.

Despite this, Gary is now back to riding his bike on the road and a couple of days ago managed a 20 mile ride, albeit at a ‘genteel pace’. This is an extremely impressive accomplishment and testament to his dedication. He has dramatically exceeded his physiotherapist’s (and my) expectations and continues to go from strength to strength. The significance of his persistent x-ray and CT changes are not known at this early stage. At medical school we were always taught to ‘treat the patient, not the x-ray’ and there’s no reason to doubt such advice now. When it comes to healing, the one thing you can’t rush is time.

In the meantime, Gary and the rest of our riding group can hope that 2021 will be a better year and that meeting up for a belated ride together somewhere sunny is not out of the question.