Life with long Covid: 'I’m not the person I was'

According to a leading respiratory consultant, many healthcare workers who contracted coronavirus in the first phase of the pandemic have developed persistent and debilitating side effects. Three nurses whose lives have been devastated by long Covid talk about their slow road to recovery 

Louise O'Reilly, Kilcullen, Co Kildare who suffers from long Covid. Picture: Moya Nolan

This week US infectious disease chief Dr Anthony Fauci declared long Covid an “insidious” public health emergency for millions of people.

Just days earlier World Health Organisation (WHO) head Dr Tedros Adhanom Ghebreyesus warned that long Covid is “devastating” the lives and livelihoods of tens of millions of people.

Covid has infected more than 600 million globally. The WHO estimates 10% to 20% of survivors have been left with often long-term symptoms like fatigue, breathlessness and cognitive dysfunction.

Professor of Medicine at TCD and respiratory physician Professor Seamas Donnelly explains what long Covid is: a documented case of acute Covid, with persistent symptoms lasting longer than 12 weeks that significantly affect quality of life and that can’t be otherwise explained.

Professor Donnelly works at the Long Covid Clinic in Tallaght University Hospital, which has seen more than 1,200 new patients in the last 18 months. There’s a waiting list of five months. Some 70% of patients are females aged between 35 and 49, contributing to Ireland’s economy and to family life. (Long Covid Facebook Ireland group has 3,134 members).

Prof Donnelly sees two main symptom clusters. The brain cluster, with fatigue as a main symptom — along with brain fog, inability to multitask, anxiety and depression — affects 60% of sufferers. And the respiratory cluster, principally featuring shortness of breath — with fatigue again very likely in the background — affects 35%.

There’s no magic tablet for long Covid or for the debilitating fatigue. Professor Donnelly says the most important help his clinic offers is clinical psychology, physio and occupational therapy input in a multidisciplinary approach. “With long Covid, particularly the brain-related fatigue, you feel an overwhelming anxiety. Clinical psychology can teach exercises that help when you feel the anxiety coming on. Physiotherapy can teach relaxation and breathing exercises.”

Prof Donnelly says all we have around patient prognosis is two-year follow-up data. “I’d love to be able to say ‘you presented with x and y — the five-year data says you’ve a 95% chance of being back to normal in five years’. We don’t have that data.”

The big question for health providers and medical scientists worldwide, he says, is how to accelerate healing, so people with long Covid can re-join society in a normal way.

In Ireland, the HSE published a national plan in September 2021, establishing seven regional centres and giving resources for multidisciplinary care. “It’s an interim plan. There’s a realisation it needs to be updated in light of recent knowledge,” says Prof Donnelly.

The HSE has a strategic working group which seeks feedback from the regional centres around patients’ needs. “As soon as it’s feasible, they’ll come up with an updated plan.” Pointing out that the five-month waiting list for the Long Covid Clinic “isn’t good enough”, Prof Donnelly says we need an integrated national plan. “We have about 140,000 to 150,000 suffering from this condition. We need more resources.”

Last week the WHO chief highlighted the “significant burden” of long Covid on health workers and the health system overall. Here, Prof Donnelly says, in the first phase of Covid, up to 30% of cases were in healthcare workers. “A significant amount of that 30% are experiencing long Covid. It’s a huge hit on healthcare workers and the delivery of healthcare in Ireland.”

The WHO’s call for “sustained efforts” to help people “experiencing prolonged suffering” comes into sharp focus when we look at the long Covid experience of three of Ireland’s healthcare workers.

‘I went from bed to couch’

Louise O’Reilly was diagnosed with long Covid in July 2021. The 46-year-old clinical nurse manager with Carlow Mental Health Services had pneumonia twice last year. “My breathing was badly affected. I had tachycardia and chest palpitations. Every week brought something new. The decrease in energy levels happened early. Going upstairs, my legs felt like two lead blocks, says Louise, mum to two children in their 20s and a 14-year-old.

“I had 16 GP visits in 2021. That’s not counting specialist visits to the Long Covid Clinic and attending for scans. For most of last year, I went from bed to couch. If I had to go somewhere, it’d take ages to get ready because of poor concentration and brain fog, which were slower to develop but now seem to be the most lingering symptoms. I also get episodes of breathlessness and dizziness.”

In June 2021, Louise, who is married to Ronan, tried going back to work. “In my head I wanted to. I’m very dedicated to my job. I feel a responsibility to the people I look after. I lasted a week. I could barely string two sentences together and I still had those blinding headaches.

“I can honestly say I’m not the person I was. I used to work fulltime. I’d go to the gym. I was involved in community life. I socialised at weekends. My personality is not to lie down and die. After the babies I bounced back very well. I was always working, always on the go.

“Now life’s very limited. I’m not able to do basic things around the house without getting exhausted. I’ve been told Covid affects every system in the body. I’m on medication for gastritis. I’m on inhalers. I’m waiting on a CT scan for my lungs because X-rays show abnormalities. I’m on anti-depressants.

“My background is in mental health. I’m very good at minding it, and that of everybody around me. But long Covid has greatly affected my mood. It’s a form of trauma, what’s happened.”

In recent weeks, Louise returned to work part-time. “I’m lucky I’m being facilitated with a phased return to work. But by Thursday, I’m just shattered for the whole weekend.

“I worry this might be it [for my health]. The uncertainty and unpredictability of Covid means there’s no time frame as to when people will get back to normal. People like me might always have ongoing difficulties. We don’t know.”

Louise feels long Covid among healthcare workers needs to be recognised as an occupational injury. That recovery isn’t straightforward but “full of ifs and buts” also needs to be recognised — because this impacts ability to return to work. “I’d also like the HSE and Government to look at providing neuro-psychological rehabilitation because we know the brain’s affected. Up to now, the focus has been more on the physical.”

Frederick Guarin who suffers from long Covid after contracting the virus in March 2020. Picture: Moya Nolan

‘I wasn’t able to walk’

Covid-19 had only arrived in Ireland, and healthcare worker Frederick Guarin was at an infection control meeting when he started feeling an itch in his throat.

A ward manager at Tallaght University Hospital, where he’d worked for 19 years, he loved his job. “I was a very active person in my work — I helped a lot of people.”

As that first afternoon wore on, Frederick’s throat got worse and by the following evening — with flu-like symptoms and fever — he suspected Covid. Advised to quarantine for 13 days, it was six days into this phase when — venturing out of his bedroom in the apartment he shared with two other healthcare workers — a housemate expressed alarm at his colour.

“I had a blackish colour and was short of breath.”

Sent by ambulance to hospital, Frederick was dizzy and had a temperature of 39°C. At Tallaght University Hospital, he was put on high-flow oxygen. “They took my bloods, did a chest X-ray. The doctor said my lungs were very, very bad.”

Fred was put in an induced coma in ICU and placed on a ventilator for 26 days. “When I woke up, I wasn’t able to walk. I had no balance. I was literally being hoisted from bed to wheelchair.”

Needing litres of oxygen to enable him to stand, Frederick was transferred to Peamount Hospital near Newcastle, Co Dublin in early August 2020. “I was still weak, still needed oxygen. I had to walk with a frame.”

Therapy in Peamount was very beneficial but extremely taxing. “I was determined to get better, to walk again. I’d been a very healthy person. The difficulty was when I’d start to walk I’d have palpitations and my oxygen levels would go down.”

Discharged home in mid-October, he could go up and downstairs but with difficulty. “By the time I reached my third-floor apartment, I was out of breath.”

Frederick has improved a lot but continues to suffer from long Covid — from shortness of breath that impedes his walking, from pain “like electricity passing through” his legs. “I still have palpitations. I’m waiting for MRI to see if there’s a problem with my heart.

“I suffer from depression, from post-traumatic stress. My future has been altered by long Covid. I can’t work as a nurse manager. I can’t go around the ward anymore. I’m really frustrated because I want to serve.”

On physiotherapy — and speech and language therapy for swallowing difficulties — Frederick’s also on medication for nerve pain and for his heart. He has “no clear indication what direction I’m headed” in terms of prognosis. “There’s no proper support around how to deal with long Covid — at the moment they’re only treating the symptoms.”

Turning 53 this year, he’d love to go back to work—  for the normality, the routine. “But I have this fatigue, which makes me weak, sleepy. I’ve no energy to do anything. I’m 100% supported by my employer — and have been since I got sick. I’m very thankful for that.

“I’d love to travel back to my country, The Philippines. I want to see my sister. I don’t know if it’s viable to go on a plane for a long-haul flight.”

Frederick has many questions and feels his future hanging in the balance. “For us healthcare workers, if we won’t be able to go back to work anymore, what will be our options?

“We risked our life in a life-and-death situation because we were serving. Hopefully, the Government won’t forget those of us now suffering from long Covid. I hope they recognise the efforts done by us.”

‘The pain is brutal’

Every morning Fiona Somers wakes with a different symptom. But always there’s severe exhaustion.

“I could be sitting, watching TV, and my eyes would be closing. I’d have to lie on the couch and sleep for an hour or two. This is every day. If I do something ‘strenuous’ like go for a walk, next day I’m wrecked and can’t get dressed,” says the 52-year-old, a clinical nurse manager in St James’s Hospital.

“I attend different clinics. I was on no medication before all this started. Now there’s a list. My thyroid’s out of whack — I’m on Eltroxin. I can’t regulate my body temperature — if I’m shopping, within minutes my fringe is soaking wet with sweat running down my face.

“I’m on painkillers for nerve pain in my feet and hands. The pain’s brutal. I get vertigo on and off. I’m on two inhalers a day. I still have ‘Covid hands’ — the skin on the palms of my hands breaks down, get scaly, bleeds. I’m suffering from anxiety. I’ve poor memory and concentration. I’m on anti-depressants.”

Back in March 2020, Fiona was among the first Covid cluster mentioned on the news. “I was the last one standing,” she says. Her symptoms were “awful sinus headache and a feeling like someone was sitting on my chest” and, within 24 hours, fever of 40°C.

On a ventilator for 16 days, Fiona, who’s single, says every organ in her body was affected. She had five rounds of dialysis before her kidneys luckily started working again. “The most difficult part for me, a nurse, was being on the other side of the bed. I wasn’t able to do anything — they were washing me, feeding me — I couldn’t move my hands. I couldn’t walk because of muscle wastage. I lost three stone in there.”

Fiona has long Covid but she also has ICU Syndrome. “I’m suffering from the effects of having been in ICU — the psychological effect of all the things I saw in my delirium, and also the PTSD effect.

“Saying that, I have improved. I left hospital in a wheelchair. I can walk now. I can drive on certain days. It’s just to get the sleep sorted now, the brain fog. I couldn’t do my job with my poor memory and concentration and vertigo. I don’t know the long-term outlook.

“I’m totally supported by my employer. I’m on ‘special Covid leave’ so I get paid. My colleagues take me out for lunch. I’d give anything to be back at work but I’m just not able and that’s heartbreaking. That’s what Covid has taken from me.

“The worst thing about it all is not feeling me. I’m not the Fiona I was two years ago.”