Wachuka Gichohi

Wachuka Gichohi, the founder of the Long Covid Kenya Support Group on Facebook.

| Pool

Lasting misery of struggling with long-term effects of Covid 

What you need to know:

  • Post Covid-19 condition occurs in individuals with a history of SARS CoV-2 infection.
  • Symptoms of long Covid vary from person to person.

In March, 38-year-old Wachuka Gichohi marked a year since she contracted Covid-19. If her stars had aligned, she would have commemorated her covidversary by celebrating a triumphant life free from the disease.

Instead, she chose to memorialise that day by creating an online community on Facebook of people whose symptoms persist despite getting a Covid-19 negative certificate. She is one of them. For a year and seven months, she has been identified as one with long Covid or what others call a Covid-19 long hauler.

The group goes by the name ‘ Long Covid Kenya Support Group.’

When the Nation reached out to her, she said: “We feel ignored and nobody pays attention to people who turned negative but still have symptoms. There’s a lot of attention on vaccination, hospitalisation and death but rarely, or none at all, when it comes to people with persisting symptoms of Covid-19.”

Evidently so, because, until October 6, the World Health Organization (WHO) had not given an official clinical definition for the condition. In a Delphi Consensus (an agreement of diverse experts) the health authority finally agreed on a definition.

“Post Covid-19 condition occurs in individuals with a history of probable or confirmed SARS CoV-2 infection, usually three months from the onset of Covid-19 with symptoms that last for at least two months and cannot be explained by an alternative diagnosis,” the WHO wrote.

“Common symptoms include fatigue, shortness of breath, cognitive dysfunction but also others and generally have an impact on everyday functioning. Symptoms may be new onset following initial recovery from an acute Covid-19 episode or persist from the initial illness. Symptoms may also fluctuate or relapse over time.”

The naming itself has been variable. For instance, in February, Dr Anthony Fauci, the chief medical adviser for the US president, introduced a new acronym in that regard – PASC, for post-acute sequelae of SARS-CoV-2 infection. There’s long Covid and long haulers.

This condition is as unpredictable as the future of the pandemic. It is in that regard that Ms Wachuka sought to seek solace and console her mates.

Symptoms still linger

Brian Otieno is one of them.

When Covid-19 drumrolls started sounding, albeit faintly, in February last year, the 27-year-old believed he was positive for the disease.

He had not taken any test to prove his assertion. He tells the Nation that he had this dry cough and sporadic shortness of breath that did not go away.

At the time, Kenya had not reported any positive coronavirus case.

Because of the irritating cough, he opted to self-diagnose and self-medicate – a blunder. His exploits made him buy over-the-counter antibiotics and cough syrups, which, regrettably, had zero effect on his condition. It was akin to having a perforated umbrella in the middle of a storm.

Weeks later, he confirmed that he had Covid-19. At the time, Kenya had recorded countable cases. Stigma, fear, and a new normal became the order of the day.

Almost two years after confirming that he had the respiratory disease, and eventually tested negative, the symptoms still linger and he says his life is not the same.

“I worked at a Chinese hotel in Nairobi’s Kilimani area and interacted with different people. I must have contracted the disease then. I didn’t know it was Covid-19,” he said.

Brian Otieno

Brian Otieno, 27. More than a year after it was confirmed that he had Covid-19, the symptoms are still lingering.

Photo credit: Pool

“The information about the disease was hazy but the symptoms I had made me suspicious. When I confirmed it, I knew I was in for a ride.”

At first, he did not want to take the test. He believed it was a cough that would die down as it always does.

It did not.

“The more I ignored the symptoms, the worse they became. After testing negative, I started experiencing pain in the chest. It felt very tight, and my heart was always racing,” he explains.

This time, Brian went to a hospital and undertook tests, which did not present any major threats.

“I was told my oxygen levels were okay, my heart, too, was okay.”

However, his next hospital visit revealed that he had inflammation in the middle of his chest.

“I was given asthma medicine but when I also had acid in the stomach, I had to take different medications.”

He says he has lost 10kgs since and his girlfriend of seven years also left because of his condition.

“I had to go back to my parents’ house, and I have not worked since last year. Long Covid makes you feel as though you are not in contact with the environment. I cannot walk properly and my diet has greatly changed. Starch and fermented food is a no-go zone,” he says.

Varying symptoms

A 46-year-old woman, who did not wish to be named because of the nature of her work, told the Nation that her long walk with long Covid has been exhausting. Let’s call her Maria. She is also a member of the Long Covid Kenya Support Group.

Her symptoms started manifesting between day 10 and 19 after she was vaccinated. Before then, she had had a flu and later a sore throat.

It is during the Easter weekend this year that she opted to get an oximeter to check her oxygen levels.

“I was shocked to find that my oxygen levels were 73. So I decided to go to a hospital in Kisumu and had a rapid antigen test for Covid-19, whose results were negative. It was when I took a PCR test (a sample is taken via the nose or the throat) that my test turned positive,” she recalls.

She was taken into isolation, tested negative, but a difficult battle awaited her. “It has been a long hellish battle. I have experienced extreme fatigue that I could not move for even 300 metres. I have had frequent nose and vaginal bleeding. This thing is tough and exhausting,” she says.

Symptoms of long Covid vary from person to person. She also had blood clots just like Brian.

“I went to many doctors, some of whom did not know how to deal with my condition. A gynaecologist gave me medicine for hormonal imbalance. I am now anaemic and I have to take an iron supplement,” she explains.

This mystery condition has its perks. It is expensive. Maria*, for instance, has spent about Sh300,000, out of pocket, with her employer chipping in for some of the expenses.

Covid-19 long haulers

Wachuka sighs when the Nation asks about her expenses so far.

“It is expensive but I am lucky to have a medical cover that has catered some of the expenses. I have used over 50 supplements, and going to a specialist requires money.”

“Before I created the group, I was part of a number of such international groups and I must admit that I have learnt a lot from people’s stories. “We encourage each other, and sharing those experiences makes a difference in most people’s lives. A lot of the people are isolated by family, workers and some are not understood by their doctors.

“The worst thing to do is to be alone when you are sick,” she adds.

Wachuka says the mental health of Covid-19 long haulers is paramount and should not be ignored.

The Nation visited Dr Duncan Nyukuri, the head of Kenyatta National Hospital’s Infectious Disease Unit, to get a gist of the nature of this condition.

“I like to call it persisting Covid-19 symptoms and not long Covid. I have seen a number of patients suffering from the condition, and at Kenyatta National Hospital we have a clinic that follows up all Covid-19 patients that we have handled,” he tells the Nation at Mbagathi Hospital.

The recurring symptoms that he has dealt with are shortness of breath, fatigue, chest pains, muscle ache, memory lapse, loss of hearing, clouded mind and to some extent, although rarely, reduced libido.

Persistent symptoms

“Unfortunately, there is no specific treatment for the condition. I would call the management symptomatic treatment because all symptoms are handled individually,” he says.

Dr Nyukuri advises people with persistent Covid-19 symptoms to always disclose that they had the disease to their doctors so that the doctors can get an idea of what could be happening to their bodies.

“Some doctors may not be conversant with long Covid but if one discloses their previous condition, they may have an idea,” he said.

He also advises patients to be less anxious because anxiety is one way the condition accelerates.

“We need to understand that recovering post-Covid-19 is a process and the patients will get better.”

Researchers are still trying to understand the disease and the many studies that have been published acknowledge that symptoms are likely to persist, but some questions still remain unanswered.

Some patients still wonder how long the symptoms will last and why the disease affects them, because regardless of their Covid-19 condition – symptomatic or asymptomatic – they all are in for the persistent symptoms.

A study by the Lancet says “long Covid often affects multiple organ systems, with impact on functioning and ability to work”.