“I ended up back in hospital two or three days later with the same symptoms and that was just the start of the whole rollercoaster,” Swift said.
The 20-year-old would go on to be in and out of hospital for years, having to give up her nursing career in Melbourne and move back in with her parents at Ocean Grove within just six months.
The now 28-year-old had her latest surgery on Tuesday to fix complications with her feeding tube.
“I went from 2015 to 2018 incredibly unwell and constantly in and out of the emergency department and different specialists’ offices and basically no one could figure out what was wrong with me,” Swift said.
“I’d been told a thousand different things from they thought I had an eating disorder to things like irritable bowel syndrome but every (treatment) they tried I didn’t get any better.”
In 2018, she got her first feeding tube after it was determined her digestive tract was partially paralysed.
In 2019, Swift said she was at her sickest and spent 6.5 weeks in hospital.
“My specialist decided to test me for a whole bunch of rare things just to see if any of them gave the answer to why I was so unwell,” she said.
One of those tests would end up providing the answer but not for another than three years as the testing was done in Bangkok, Thailand and the Covid pandemic caused delays.
The long-awaited answer turned up at the Swift family’s house in the form of an unexpected letter from The Alfred Hospital in November 2022, informing Swift had tested positive for gnathostomiasis, caused by a rare parasite.
Swift and her mother Dr Dickson-Swift were unaware they were even waiting for a result.
“A letter came in the mail out of the blue. I thought it was a scam,” Dr Dickson-Swift said.
“We’ve never been to The Alfred Hospital in her life. I thought ‘why would we be getting a letter from The Alfred?’ We open it and it says ‘Dear Tess, you’ve tested positive for gnathostomiasis, call me.’”
Swift started treatment in an attempt to kill the parasite immediately.
“Basically we just have to hope the treatment has been enough to kill the parasite, but unfortunately even with the parasite dead, it doesn’t mean I’m going to feel better,” she said.
“Because the parasite lived in me for many years it’s done a lot of damage and at the moment there’s no way doctors can repair damaged nerves so all the complications from it are going to be for life unless there’s new treatments at some point.”
Swift lives with severe chronic nausea and chronic pain, and has been diagnosed with major depressive disorder, anxiety and complex PTSD in the setting of medical trauma.
“Being in and out of hospital all the time and having your life completely different to what you thought it was going to be takes a huge toll on your mental health,” she said.
Both Swift and Dr Dickson-Swift wanted to share her story to raise awareness about the rare parasite and encourage people to “keep fighting” for answers when they feel unwell.
“Thailand is a huge travel place for a lot of Australians. You don’t expect something like this to happen just from going for a holiday,” Swift said.
“It kind of ruined my life. I was only 20 when it happened and there’s so much going on in your life when you’re 20, and there was so much I had to miss out on because I was in hospital or too unwell to go … I ended up losing a lot of my friendships because I was so unwell I could never do anything.
“And it obviously had a huge impact on my career because I spent three years working my butt off at university to then not being able to use my degree.”
Constant appointments, treatments, medications and surgeries have take a huge financial toll on the family.
Swift started work again near the end of 2020 as a casual disability carer. She says her own medical admin she also has to do daily feels like a full-time job.
Dr Dickson-Swift said: “I think maybe we should test for these parasites more often than we do.
“It’s such a rare parasite. The doctors we’ve spoken to since have no idea really, they’ve never heard about it.
“(We want) to raise awareness that it could be a possibility from someone who has returned from Asia. And it’s endemic in Thailand. If you’ve been to the specific places where this thing is then it’s a possibility. It needs to be a possibility.”
Swift and Dr Dickson-Swift understand there is only one specialist in Australia who deals with the gnathostomiasis, and Swift was his 68th patient diagnosed with the disease.
They said after speaking with Dr Andrew Fuller, who works at The Alfred’s Department of Infectious Diseases, suddenly everything Swift had been through made sense.
Gnathostomiasis is a parasitic infection and humans can become infected by eating undercooked or raw infected freshwater fish, eels, frogs, birds, and reptiles.
It is most commonly diagnosed in Asia, particularly in Thailand, other parts of Southeast Asia, and Japan.
According to the US Centers for Disease Control and Prevention, when someone eats the parasite, it moves through the wall of the stomach or intestine and liver.
Early on many people have no symptoms or they may experience fever, excess tiredness, lack of appetite, nausea, vomiting, diarrhoea, or abdominal pain.
When the parasite moves under the skin usually after 3 to 4 weeks, people may experience swellings under the skin that may be painful, red or itchy.
On rare occasions, it can enter other parts of the body, including the lungs, bladder, eyes, ears and nervous system, including the brain.
If the parasite enters the eye, it can result in vision loss or blindness. If the parasite enters a nerve or the spine, it usually results in severe nerve pain, followed by paralysis of the muscle controlled by the affected nerve. If the parasite enters the brain, it can result in headache, decreased consciousness, coma and death.
