1 Sep 2018

Surviving necrotising fasciitis: the 'flesh-eating' disease

From Saturday Morning, 8:44 am on 1 September 2018

A Christchurch woman who was infected by the "flesh-eating" bacteria says people should be aware it can affect anyone and to make sure they go to hospital if they're feeling pain.

Liesl Johnstone tells Saturday Morning's Kim Hill that she was picking up prunings from a Hawthorne hedge and throwing them on a trailer when a thorn pierced her glove and dug into her knuckle.

Liesl Johnstone - Christchurch woman who survived necrotising fascitiis

Photo: Supplied

As the next week wore on, Johnstone lost her appetite and her energy, and when she prodded her knuckle it felt like it "had dissolved into something akin to rotten crushed Weetbix, the pain shot through its surrounds".

She didn't put antiseptic cream on, and didn't go to the doctor or hospital initially.

"I think I'm really tough, and the last time I had the flu was 26 years ago, and I just don't get sick … so you have these sort of erroneous beliefs about how strong you are.

"I didn't actually relate the fact that I was feeling tired and slightly feverish - I didn't actually think I was slightly feverish I just thought 'I'm not feeling too good' - but I didn't actually dwell on it on Monday and Tuesday."

She says the pain became more obvious on Wednesday, but didn't start to feel majorly sick until Thursday.

"I was in the car driving my parents to a relative's place … and I suddenly felt - oh my goodness, I just felt dreadful.

"I took myself off to work later that afternoon and I got pins and needles which I've never had before in both arms from the tips of the fingers right to my elbows.

"I started to drive home and I just couldn't carry on. The thought of the roadworks in Riccarton was just too much for me. I pulled over and called my husband and said you're going to have to come and get me and take me to after hours or the hospital."

Her husband cycled to her, and drove the car to their nearest option. She was diagnosed initially with flu, but she says that's not surprising because the disease is so rare it's not easy to spot.

Untreated, it got worse the next day - but she didn't want to go to hospital initially because it would be full of drunks on a Friday night.

"So, I'm not going to be taken notice of, so I thought I might as well wait till the middle of the night at least … 2.30am I felt dreadful, started whimpering, and when you're really weak you don't have what it takes to get you there.

"By 5am I could see tracks running up my arm, and I was really in pain."

She says it was a strange kind of pain, which could be a symptom to watch out for.

"The pain felt like my hand was transparent, if you know what I mean … it didn't feel exactly like normal pain, it felt like my hand was disappearing.

"It's a very strange thing, I've never had it before and I never want to have it again."

She went to the hospital, where she was told they wouldn't know for sure what they were dealing with until they opened her up. They did so, and she was told later they watched her flesh "turn black before their eyes, and had to cut all the dead flesh away immediately".

"It would have been so much easier for them in the old days, in the old days they probably would have just [amputated], cut my arm, because that is quite a decision for them apparently to save your life, because a quarter of people just die of it… it's time dependent."

She went through eight surgeries before she was allowed to leave the hospital, and has had a ninth since. In between surgeries, she had intravenous antibiotics every four hours.

It was a close call. 

"It's time dependent. You've got to get yourself to the hospital, if I didn't get to the hospital in time I would have died within 24 hours, I was told.

"You watch people hear about what's happened and you can see the look past behind their eyes, that 'oh, that's just not going to happen to me'.

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Photo: 123rf

But Ms Johnstone warns that while it's rare, it can happen to anyone. 

"I think it's like a perfect storm that doesn't happen too often, but anecdotally it seems to be becoming a little bit more common."

It's not the bacteria that eats the flesh, instead it's the toxins they release. 

"Strep A apparently a lot of us have, about 30 percent of the population have Strep A somewhere on their body.

"So that's not what causes it, you need an injury, you need a puncture or an impact injury, and it could be a rugby injury."

The surgeons managed to save her hand. Ms Johnstone says the hand reconstruction was done in the eighth operation, when they took skin grafts and a muscle out of the left hand side of her back, which is largely not needed.

"Apparently not unless you're a champion rower, one career option closed off! I can still kayak … I can still swim."

However, her hand still needs more care.

"The thing I said just before going into my first surgery was 'please save my hand, I play the piano'.

"It needs to be compressed at the moment, there's still swelling under there.

"I can play the piano, I can't do the full stretch ... I won't be a concert pianist either!"

She says she's fortunate, and thankful for the skill of the medical team.

"I'm so grateful, I'm just so grateful to have a hand.

"I'm so grateful to the medical team, and I found the medics unbelievably giving, and it would have been easier for them just to cut my arm off wouldn't it, because they'd know they'd save my life."