Lily thought she was vaccinated for meningococcal, but a rare strain almost killed her.

On Christmas Day 2017, 23-year-old Lily O’Connell thought she was suffering from a terrible flu or food poisoning. She was aching all over, vomiting, and had a fever. 

But when her mother noticed a rash appear on her face and body, she knew it was something more.

“Minutes later we were in the car on the way to the hospital,” Lily shared in an interview with Mamamia. “Thank goodness the hospital is literally three minutes away from my home. It all escalated in such a short period of time.”

Doctors told Lily’s mother that if she had waited any longer, she may not have made it.

“Lucky I was at home with my mum. A lot of the people who do end up passing away from meningococcal are those that are living alone,” Lily says.

Lily was diagnosed with the rare W strain of meningococcal, which led to kidney failure. She was kept in the ICU for a week, and then moved to a ward for three weeks.

Even after her month in hospital, Lily had to come back to the hospital every second day, for five hours at a time, for dialysis. 

“Even though I had left the hospital as such, I was still chained to it for around nine months,” she shares.

“There were so many things I couldn’t do.”

Lily says that her friends had assumed that she would be fine once she left hospital but that was not the case. Lily says that essentially she had to put her life on hold for a year while she recuperated.

“I had to stop university and quit my job,” she explains. “I lost the ability to focus, my memory was really bad, I was very sensitive to light. Things like looking at a laptop or reading a book were really hard. When you take away those simple pleasures in life it makes it very difficult.”

She couldn’t do all the things that she used to do as a young woman, which made it difficult to maintain relationships, especially as many of her friends didn’t understand anything about the disease she had contracted.

“You become very isolated,” says Lily. “You don’t have the freedom of catching up whenever you want to with your friends. I couldn’t swim. There were so many things I couldn’t do.

“I could only drink a certain amount of liquid per day. I couldn’t eat anything with salt in it. There were so many restrictions.

“Going to the pub with friends after work or going to the markets on a Saturday were not an option as I had to be in the hospital for dialysis. My social life, my work life, everything stopped.”

"My friends and I knew nothing about meningococcal."

Despite being vaccinated for meningococcal C, the rare strain of meningococcal that Lily had contracted wasn’t covered at the time.

Through the Australian Government’s National Immunisation Program, school students are now covered with the ACWY vaccine which protects them from four strains of meningococcal that are found in Australia, A, C, Y, and the W strain that Lily contracted. 

The vaccine is free for all students in year 10 aged 14-16 years through school-based immunisation programs. Catch-up vaccination is available for adolescents aged 15 to 19 years who did not receive the vaccine at school, through their GP or other immunisation provider.

Lily is concerned that young people may not be fully aware of how serious meningococcal disease can be.

"People don’t know much about meningococcal," says Lily. "My friends and I knew nothing about it."

But things are changing, with more information available for parents and students about meningococcal disease and the meningococcal ACWY vaccine. Now, all parents need to do is sign a consent form from the school for their child to receive the free vaccine.

Lily stresses that parents should not be complacent or think their healthy child can’t get sick from meningococcal.

"Nobody predicted the extent of the damage that this disease could do to me, considering I was so healthy to begin with," she says.

Lily’s doctors said she will never know exactly how she contracted meningococcal disease, but it could be from something as simple as sharing a drink with a friend, or kissing someone.

"I'm a perfect example of someone who did everything right and still got sick," she says.

"I may have lost a year but I have my whole life ahead of me."

After nine months of dialysis, Lily had a successful kidney transplant from her sister, as her parents weren’t a match. "It’s a big deal for her and I don’t go a day without forgetting it," she explains.

Rather than allowing her experience fill her life with anxiety, 25-year-old Lily has an optimistic view.

"I’m very much of the mindset that life is very precious and short so we need to make the most of it," she shares. "I’m not as cautious as I thought I’d be after this."

Lily shared a memory from her time in ICU that she says changed her perspective: "There was a moment when I heard a nurse offering my mum and sister counselling, and I assumed that meant that I was dying. In that moment, when I thought I was dying, everything went numb and I felt OK with it.

"Now I have the mindset that I need to make the most of everything. I may have lost a year but I have my whole life ahead of me."

Find out more information about the meningococcal ACWY vaccine for teens.