Two COVID-19 survivors speak of their suffering from the long-term effects of the virus
Sufferers of prolonged symptoms of COVID-19 should be offered a follow-up package, including heart and lung checks, as well as counselling sessions, to put their anxious minds at rest, one coronavirus ‘long-hauler’ has suggested.
Long COVID, the informal name for the condition characterised by long-term symptoms after the typical convalescence period, including fatigue, headaches, shortness of breath and brain fog, is, in fact, the subject of ongoing studies worldwide, and local research is about to start, but it is too early to draw conclusions.
Meanwhile, health systems have been encouraged to deal with this group of patients suffering from post-COVID-19 syndrome by creating specialised clinics and providing advice.
This is what cardiac nurse Belma Camilleri is calling for – “a form of VRT” for people like herself, who feel they cannot shake off the symptoms, but are left to their own devices.
Camilleri contracted the virus in November, but still experiences chest pain and fatigue.
Aware of the complex logistics and lack of resources to set up the “follow-up package”, Camilleri still maintains that “in an ideal world”, long haulers would be called in for a chest X-ray, an echocardiogram and an ECG to alleviate the many concerns that are hitting people in her condition.
The ‘package’ should also include talks with a psychologist to “clear the mind, assuring patients that these may just be aftereffects of COVID-19 and nothing serious,” she said, speaking from experience about her current state of mind and the “worry that it just will not go away”.
The 56-year-old nurse also believes “prevention is better than cure, and monitoring would stop a situation from deteriorating”.
It all started when Camilleri travelled to attend her son’s small wedding in the UK in October. A second swab after her return showed she had contracted the virus despite the precautionary measures the nurse had taken and the fact that she had no symptoms.
Although she only had a sore throat and a pounding headache, but no fever or cough, she was “petrified” of what could be, and wrote letters to her two sons in case she would not see them again.
Being a healthcare worker, Camilleri was all too aware of how rapidly things could go downhill, and her knowledge worked against her.
“It can be a curse; I know what can happen and how things can progress.”
She suffered respiratory problems and felt like someone was sitting on her neck and chest, able to breathe only if she lay on her stomach. Her nails would turn purple and her feet would “freeze” due to the lack of oxygen she was monitoring on an oximeter.
I was in no state to work. The fatigue was tremendous
Although she did not go to hospital, unwilling to occupy a bed while she could continue to treat herself, the nurse said a layman would panic and should seek medical assistance.
Camilleri would sleep all day, overcome by tiredness that would just hit her to the point of tears streaming down her face.
But the problem is that she has continued to feel fatigued two months later and the debilitating exhaustion also hits her while at work.
“I am certainly not the way I was pre-COVID-19,” Camilleri admits, pointing out that the “frightening” tight chest has also persevered, despite an ECG and echocardiogram showing her heart is normal.
Camilleri has not had any follow-up and explanations, but luckily, could fall back on her colleagues at the cath lab.
However, the psychological impact cannot be underestimated either, she said, adding that a negative result for antibodies has injected more fear into her.
“I cannot believe I have gone through this and am still not protected, despite having contracted the infection.”
Camilleri was the first cardiac nurse to be vaccinated, and although “everyone should take it”, she cannot say she feels totally serene.
“This intelligent virus is mutating and adapting every day… Will I be worse off if I get it again? Has my body tired of fighting it? Yes, I am a nurse, but also a human being, with the same fears.”
‘My long-haul journey’
Six months after testing positive, a previously healthy woman in her 40s, with no underlying conditions, is just about emerging from a tunnel of symptoms to warn about how “devastating” it is to live with long COVID.
Driven by the recent spike in positive cases and ever-increasing deaths to share her post-COVID experience, she wants her story to be “a wake-up call to those who still think that this is a mild virus that lasts a few days”.
Although outwardly she may look fine, half a year after testing positive, the woman, who preferred to remain anonymous, says she still battles daily fatigue and decreased exercise tolerance.
Symptoms started as nothing more than an irritating cough and a mild fever, and she was convinced things would settle within days. But instead, her condition gradually deteriorated.
The fever stopped responding to paracetamol, she developed severe gastroesophageal reflux, there were times when she could barely make it out of bed and was too tired to drink. Prescribed a host of medication, including antibiotics and steroid inhalers, nothing seemed to work…
Eventually, a negative swab test meant Public Health officially included her in “one of the magical recoveries” of the day and she was “technically cured”.
Celebrating that she had beaten COVID-19, she started counting the days to the end of quarantine and dreaming of going to the beach: “I was dying to see the sky… I had dreams and plans for my freedom.”
But these were shattered before long.
“The phone call releasing me from home arrived... But my body did not seem to have received it. It was then that I started waking up to the reality that a negative result was no certificate of cure.”
Following five weeks at home and eight weeks after diagnosis, she was no better, still plagued by a persistent cough, which lasted three months.
Around 10 weeks after contracting the virus, she started losing her hair in handfuls. It was a good two months before it started to regain strength.
“My palpitations began on my last day of quarantine and I knew I was in no state to cope with work. The fatigue was tremendous.”
When she returned to the office 10 days later, she could still barely walk 500 metres without developing a fast heartbeat and shortness of breath.
It was an effort to concentrate and assimilate anything and her short-term memory started playing “terrible tricks” on her.
For a long time, she could not have a second cup of coffee without triggering dizziness, a run of palpitations and a rapid heart rate, and she could not handle being in the sun for the same reasons.
Finally, her cough has resolved, the palpitations are less frequent, and the brain fog has started to lift. But she is aware of many other young long-haulers – as they have been termed.
With a full-time job and a family to care for, her only coping mechanism over the last six months was her optimistic nature.
“The spike in cases in January was predicted weeks ago by the medical profession.
“Yet we are already hearing of people planning short breaks with friends and family for Carnival,” she says in disbelief, following her own long-haul journey.