Brisbane lawyer and prisoner advocate Debbie Kilroy was among the first wave of Australians to ever contract COVID-19 in March last year.
Brisbane lawyer and prisoner advocate Debbie Kilroy was among the first wave of Australians to contract COVID-19 in March last year.
Now, 18 months on, Ms Kilroy has been left wondering if she will ever fully recover from the virus.
"Since I have had COVID my health has just deteriorated in so many different ways," Ms Kilroy told 9news.com.au.
"Nearly every morning, I wake up and it's hard to breathe.
"On some days, I can walk down the stairs and be exhausted and need to lie down."
READ MORE: How 'long COVID' leaves survivors facing strange and frightening futures
While most people who get COVID-19 don't become severely ill and will recover quickly, Ms Kilroy is among a significant number of people suffering from "long COVID".
Ms Kilroy, who is the CEO and founder of the prisoner advocacy group Sisters Inside, contracted COVID-19 on a flight back home from the US just as the first cases of the virus were starting to appear on our shores.
She was travelling with her friend and co-worker, Aboriginal and Torres Strait activist Boneeta-Marie Mabo, who also became infected.
"My symptoms early on were nausea and being freezing cold," Ms Kilroy said.
"All the symptoms they said to look out for I didn't have."
The pair spent a week at home, then another week in hospital when Ms Kilroy's condition worsened.https://twitter.com/DebKilroy/status/1437291721839112196?ref_src=twsrc%5Etfw
Ms Kilroy tested positive to the virus for 104 days, but was given the all-clear to return home after about three weeks as she was no longer deemed infectious.
Before contracting COVID-19, Ms Kilroy was a fit and active 59-year-old.
"I have been healthy all my life and I have never had any real health issues at all," she said.
"I used to get up at 4am and train every day."
But she describes her health battle now as an "ongoing nightmare".
"I have been to heart specialists. I have been to pituitary gland specialists. I am going to the chest specialist again next week," she said.
"My nervous system has crashed. Right now, as I am speaking, I can feel internally my body is just shaking."
Ms Kilroy said she had also experienced other strange symptoms, which, while less well-known, were commonly reported on "long hauler" COVID groups online.
"A lot of long haulers get little, recurring infections, like ulcers in your mouth, or eye infections," she said.
READ MORE: COVID-19 cases climbing in US, wiping out months of progress
Ms Kilroy said she ended up at her local hospital's emergency department a few months ago because of a severe eye infection.
"I was at work and within half an hour one of my eyes had just closed up," she said.
"It was so painful and like someone had scratched the hell out of it.
"Then, fairly quickly, the second eye closed up too. I had to go up to emergency because I couldn't see."
Another symptom common among long COVID sufferers were painful rashes, she said.
"It's really weird, I get these infections on my shins, but for some people their legs are totally covered," she said.
"Just two weeks ago, it was all across my stomach, a massive red rash."
'COVID is not like the flu'
Long COVID is generally defined by researchers as when patients experience symptoms lasting for months after the acute stage of the disease.
It is hard to pinpoint the proportion of COVID-19 patients who will go on to suffer long COVID, with studies varying greatly in their findings.
In February this year, the World Health Organisation released a report based on European cases which showed one in 10 patients developed long COVID symptoms.
However, a recent review of COVID-19 data from 45 studies by the Stanford University School of Medicine in the US found as many as 70 percent of patients had long-lasting symptoms.
In Australia, associate professor of population health at UNSW, Bette Liu, followed the cases of 3000 NSW COVID-19 patients - which was almost 95 per cent of people who contracted the virus in the state between January and May last year.
Dr Liu's study found about five percent of patients were still experiencing symptoms three months later, the most common being fatigue and a persistent cough.
Dr Stuart Tan is a Sydney physician specialising in trauma and rehabilitation at the New South Wales Illawarra Shoalhaven Local Health District.
He is also conducting a study on long COVID with participants from across the country.
Initial findings from Dr Tan's two-year study are due to be published soon, but his researchers are still looking for participants, particularly anyone who contracted the Delta strain of the virus.
Dr Tan said there was no doubt long COVID was having a significant impact on the quality of some patient's lives.
"COVID-19 is not like the flu, there are long-term implications," Dr Tan said.
"The recovery journey can be a long one and it can affect your quality of life even if you are not hospitalised."
The long-term impacts of COVID often manifested in complicated ways and were yet to be well understood by the medical community, he said.
While Australia's current focus was on managing the acute caseload of new infections and hospitalisations, Dr Tan said there would be a need in the near future to look at how long COVID patients could be better managed.
"I definitely see a place for a coordinated strategy to address the health issues related to COVID because, unlike other conditions, the health issues are varied and can be quite complicated," he said.
Dr Tan said the suffering of a growing number of long COVID patients should serve as a warning for others.
"Based on what we have learned so far, my message is that I would strongly encourage everyone to do whatever they can to avoid contracting COVID," he said.
Ms Kilroy said she hoped by sharing her story it would encourage people to get vaccinated to protect the most vulnerable in our community.
"COVID is serious. I know people in long COVID groups who are going in and out of the ICU regularly," she said.
"And people are dying. If we can be vaccinated and stop people dying we have an individual responsibility to do that.
"I don't want to be the one to give this to someone else who could end up dying."
Anyone who is interested in participating in Dr Tan's long COVID study can contact the research team at ISLHD-CovidResearch@health.nsw.gov.au or phone 0459 887 682.
Contact reporter Emily McPherson at firstname.lastname@example.org.
Source: 9News https://www.9news.com.au/national/coronavirus-aussie-lawyer-debbie-kilroy-shares-covid19-warning-18-months-after-infection/db399283-de7d-4839-a1b4-bc1a2ea6869d