Coronavirus: ‘My recovery is worse than the initial experience’

Claire Twomey’s coronavirus journey started mildly enough – and hasn’t stopped.

“Initially, it was only a headache, and sinus pain last March, and I lost the sense of taste and smell. Then I spent four or five days in bed with a ferocious fever, a cough and migraines.”

She attempted to go back to work, but her fever and cough worsened and she spent another four weeks in bed with a high temperature.

Despite periods of apparent improvement, months later, she’s still coughing. “A trip up the stairs aggravates the cough. I go to the shops and I suffer a loss of breath.

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Ms Twomey is one of a large and increasing cohort of coronavirus patients who are experiencing longer-term effects of the disease. In Ireland and across the world, doctors are linking the virus to a bewildering variety of symptoms and, as time goes on, they are finding many of these are slow to resolve.

Dublin GP Nuala O’Farrell describes the virus as “the imitator of all known diseases”.

“Headache, dry cough and fever, we all know about. Diarrhoea, blistery lesions that look vaguely like shingles on the trunk, chilblains, chest pain, tachycardia, arrhythmias, pericarditis (swelling of heart tissue) and of course elderly people who are just ‘not themselves’, can all be symptoms of Covid.”

Rollercoaster ride

A number of her patients have been on a rollercoaster ride of symptoms since contracting the disease. “One woman went from doing spinning classes four times a week to, two weeks after testing positive, being hardly able to walk up the stairs. Her head was splitting, she had no sense of taste or smell and every bone in her body was aching. Eight weeks on, she is only beginning to recover.”

Ms Twomey, too, has found that being fit provided little protection against the disease. “I did yoga, I ran. Now if I try to do anything, I have to take to the bed for four or five hours. I have aches in my arms and legs. I’ve gastro issues, and tingling sensations on my skin.”

"When we say that the vast majority of people have a mild illness and recover that is true," says Dr Mike Ryan, the World Health Organisation's head of emergencies. "But what we cannot say at the moment is what are the potential long-term impacts of having had that infection.

“We hope that everybody who recovers from Covid-19 will make a full and permanent recovery but there are enough people out there having difficulties with their exercise tolerance, having difficulties with their breathing and potentially having long-term impacts on their cardiovascular system.”

International findings dovetail with the experiences of some Irish patients. One international study suggested 10 to 15 per cent of people, including some mild cases, do not enjoy a quick recovery. In Italy, 87 per cent of one group of patients who had been hospitalised were still struggling two months later.

It remains too early in this novel pandemic to say how long patients’ symptoms will endure, and whether the virus will give rise to chronic disease.

The divergence in patients’ symptoms is driven by the varying way the virus attacks the body, often leading to inflammation and blood clotting as well as respiratory ailments.

Notable too is the number of patients who say they were previously fit and healthy but are now having lasting problems, as well as “up and down” nature of many patients’ recoveries.

SARS-CoV-2, the virus that causes Covid-19, is proving remarkably adept at disrupting many areas of activity in the body. It uses a spike protein to attach itself onto cells’ ACE2 receptors, found in the lungs, heart, gut, kidneys, blood vessels and nervous system. Often, the damage is done as much by the overweening inflammatory reaction of the body as to the original infection.

“We still don’t know what we’re grappling with in terms of the long-term cardiac manifestations,” says consultant cardiologist Dr Crochan O’Sullivan. “The interaction between the virus and the ACE2 enzyme triggers its entry into cells in the body.”

Stroke is a particular risk linked to coronavirus given the role of the virus in making patients more susceptible to blood clotting.

Ms Twomey says what really exhausts her is having to deal with three or four issues at the same time. “The fatigue is like nothing I’ve ever experienced in my life. It’s like a crash.”

Her yo-yo experience of the disease prompts her to remark that “my recovery is worse than the initial experience”.

Along with her parents, who also tested positive for the virus, she attends the Mater post-coronavirus clinic in Dublin. “They’ve been great,” she says, “but there’s only so much they can do. They still don’t know the answers”.

Dr Killian Hurley is a respiratory consultant at Beaumont Hospital, where he heads up a post-coronavirus clinic, and the RSCI. Over the last six months the clinic, which takes referrals only from patients who were hospitalised, has seen more than 100 patients.

Severe fatigue

The clinic provides patients with access to specialists from a variety of disciplines including respiratory medicine, intensive care, infectious diseases, psychology and psychiatry.

Dr Hurley says patients come with a wide variety of lasting symptoms, including continuous shortness of breath, cough, severe fatigue, anxiety and other mental health issues.

Some of those who spent periods in intensive care are suffering a form of post-traumatic stress disorder, he says.

Many have lung problems months after their disease experience. “They still have abnormalities on their chest X-rays; there’s scarring there, particularly among those who were in intensive care.”

For a small group, even walking a short distance after six months causes them difficulties. Generally Dr Hurley finds that the more severe their illness was, the more severe are their continuing after-effects.

“This is a totally new disease. We don’t have 40 years of research into this. My sense is, though, that it will be a mild disease for many, with a good chance of eventual recovery.”

However, many patients are “terrified”, he acknowledges, and “frightened about what the future might hold”.

Stressing the need to identify problems early, he says the health service needs to be proactive in following through with patients in a standardised way.

This is difficult when only 50 to 75 per cent of health service capacity is available due to coronavirus restrictions, and while the system is continuing to battle new infections.

He says his “hope” is that the residual problems of most patients will resolve over the space of a year, as happened with other respiratory syndromes.

Ms Twomey has set up an online support group for coronavirus survivors, which now has more than 400 members.

The Facebook group is providing a forum for discussion, sharing of experiences and guidance.

Suffering

“People feel they don’t have answers to their questions. They’re frustrated because there isn’t one place for them to go to seek those answers,” she says.

Many people suffering symptoms, including those who were never tested because their symptoms didn’t meet the criteria in place at the time, and those whose tests came back negative, are not eligible to attend the clinics and so have to plot individual recovery journeys.

One of those without a diagnosis is Dee Roche from Dún Laoghaire. She believes she contracted the disease in mid-March, when she developed a cough. She had no temperature and after a while she seemed to be fine.

But in mid-April she developed fatigue and nausea. One day she “couldn’t get out of bed”.

Because she had only one of the symptoms required at the time to be sent for testing, she never got a diagnosis.

She says her condition worsened, as she developed shortness of breath and heart palpitations, “brain fog” and loss of memory.

“It came that I couldn’t remember the right word to use in a situation. Or I would be looking at words and not recognising them, or saying the wrong word,” she says.

Eventually she got a test, but to her distress it came back negative.

Still her condition did not improve. “I used to run or walk 15km a day, but now I couldn’t leave the house. I’d have a couple of good days, and think things were fabulous for a week. And then the next day, it would hit me like a train again.”

Still suffering from a “rollercoaster of symptoms” after 16 weeks, she had to stop working and tending her garden. “I’ve had relapse after relapse. It’s the uncertainty and the not knowing that is so hard to take, not being able to live a normal life and the impact on your mental health.”

She realises others have it worse but wonders how long her symptoms will persist.

“I don’t think I can cope with another six months of this. People don’t understand how long term this can be, and the damage that can be done.”