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Quadriplegia with COVID-19: One man’s story

8 September, 2020

Now that he has adapted to living with a spinal cord injury, Les is not easily rattled. So when he learned that he might have COVID-19, he didn’t think it was such a big deal.

Les was pretty sure he did not have COVID-19. Even though his wife had tested positive for the new coronavirus illness a few days earlier. He had notified his care agency of her diagnosis, and had got himself tested.

Les’s agency (which was not AQA) had alerted his team of six support workers, who had been delivering care round the clock - taking turns to sleep over in a spare bedroom that Les had reserved for them.

Les has an incomplete C2-4 spinal cord injury, from a road accident. He uses a powered wheelchair, has limited lung capacity, and needs help with dressing and many other daily activities.

'You think, that's nothing' 

Les’s wife, Dorothy, had picked up her infection at work. Her early symptoms from it were mild. Les says he wasn’t worried even when he answered his phone on 27 July, a Monday, and was told he had tested positive.

“On that day I had started to get mild flu symptoms,” Les reports from his home in Melbourne’s west, where he is recovering strength after 18 days spent in hospital.

“It was so mild that you think, Oh, that’s nothing.

“You know, we’re in the middle of winter. You wake up with a little bit of a sore throat, and you have a cup of coffee and things come right. And to have a little bit of a runny nose - that’s nothing out of the ordinary. It might be hay fever. I’d been pretty sure I’d test negative.

“I’m a fairly strong sort of a person. I wasn’t rattled by the positive result. I thought, any kind of luck and I’ll just have light symptoms and that will be it.”

 

Tired and weak: Les at home after his hospital battle.

'To have a little bit of a sore throat and a little bit of a runny nose - that's nothing out of the ordinary.'

Early precautions

Les had been on on holiday from his work as a communications technician when in March 2016 he fell asleep behind the handlebars of his Yamaha motorbike. It had been a long day of touring Tasmania, with workmates. He remembers himself as wafting past a slow car at 100km/h on a straight piece of road.

“Next thing someone was doing CPR on me.”

After the shock of his accident, and having adjusted to life with his injuries, not much alarms him, he says. “I don’t think that anything is going to be a big deal for me now.”

Nevertheless, the 60-year-old took early precautions on news last summer that the coronavirus had begun to spread in Australia.

“As soon as I found out about it, in February or March, I put myself into lockdown. I was just staying home, unless I absolutely had to go out. And I was doing quite well.”

Concern for support team

For an agency, notification that a member of a client’s household has tested positive for COVID-19 requires quick action to protect support staff and possibly other clients. Les’s support workers had to take tests, and isolate while they awaited results.

Vanessa with Les: "I was happy to help."

They were asked whether they were prepared to continue working with Les, using the recommended protective equipment. Les says his entire team said they were.

One of his carers, Vanessa, recalls that she had been surprised when the positive result came in for Dorothy.

​“I’d been working with Les just before we had to get tested, and I didn’t think she had COVID,” says Vanessa, who had been on Les’s team for about a year at that point.

“I was thinking it was just a cold and it wasn’t going to be a positive result.

“My work laid it out explicitly that Les too could be positive. So I knew exactly the situation that I would be going into.

“I just thought, Les needs help. And I was happy to help. The agency pulled me off my roster, and just put me with Les.”

Positive and isolating

From the test that was prompted by Dorothy’s diagnosis, Vanessa tested negative for COVID-19. But she was told that such an early test might not be conclusive. She would need to take a second test 11 days later.

She says she was the only member of Les’s care team to receive a positive result from the second test.

However, she developed no symptoms, and none of her close contacts subsequently tested positive.

Like Dorothy, she isolated at home. Health authorities monitored her condition by phone, supplied her with equipment that could record her temperature and oxygen levels, and offered help with daily living needs.

“They were really good,” Vanessa reports. “Really helpful.

“I think everyone thinks I’m a bit of a freak, because I didn’t have any symptoms. The nurses stopped monitoring me after 10 days. They were asking me if I was actually positive, because they couldn’t believe that I didn’t have any symptoms the whole time.” 

'I said as soon as I feel sick at all, or the carers aren’t happy, I’ll go to hospital. And the next day, that’s what happened.'

Carers or nurses?

With care at home still available, Les declined an immediate invitation to be cared for in hospital, which he received during the phone call that advised of his positive result.

“The Department of Health and Human Services (DHHS) were on top of my situation,” he says, “and they recommended I go to hospital straight away because of my diminished lung capacity. Which they already knew about - I’m not sure how they knew.

“I rejected the idea. I said, ‘Look, I’ve only got very mild symptoms and we’re doing quite well.’

“I knew that hospital care would be very different from home care. Nurses are not carers, and they do things differently.

“I said as soon as I feel sick at all, or the carers aren’t happy, I’ll go to hospital. And the next day, that’s what happened.”

 

'About the fifth of August I started waking up, horrendously hungry. I think the flu part of it was over, and from then on it was fatigue.'

When Les called for an ambulance, it was not because his carers would no longer work with him. It was because those on duty had recognised a decline.

“They pointed out that, Les, you’re not yourself and things aren’t going quite right for you. I started to take more note of myself, and agreed.”

Six days without food

That was a good call. Les says he was admitted to the Austin Hospital in Heidelberg on Tuesday 28 July and placed in the COVID-19 ward.

“For the next three days I had really strong flu symptoms,” he remembers.

“I also had loss of smell and taste. And with that, lack of appetite - I didn’t want to eat.

“I had a very mild fever, and that mucked up my sleep.

“I didn’t sleep for three days. For those three days, I didn’t eat. I felt pretty unwell.”

However, Les says his symptoms were never severe enough that he feared he might die.

“At no point was I scared.

“I managed to get my sleep back, and then I slept for three days - just about non-stop. Again, no appetite for those three days.

“About the fifth of August I started waking up - horrendously hungry. I think the flu part of it was over, and from then on it was fatigue. Fatigue partly from COVID-19 - which tends to have a lasting effect of fatigue - and partly brought on by the fact that I didn’t eat for six days.”

Recovering strength

For nearly all of his 18 days at the Austin, Les was the sole occupant of a four-bed room. He believes his isolation was driven by the possibility of patients cross-infecting one another with different strains of the disease.

“It took me a long while to get a bit of strength back,” he says. “I was feeling very weak.”

Normally competent operating a keypad, he recalls himself as feeling so feeble that he had trouble selecting channels on his TV remote.

But he says he would have been well enough to leave hospital sooner. One constraint was his need for official assurance that he was no longer infectious, given that a recovered case, he says, might test positive for COVID-19 over succeeding weeks or even months.

Another was his need for his care arrangements to resume when he returned home. As it happened, his agency was able to reassemble for him his established support team.

“I’ve got awesome relationships with all my carers,” Les says.

“They are all still wearing PPE gear and gloves and masks. Some of them have started wearing safety glasses rather than faceshields. The faceshields muck up your peripheral vision.”

Home, sweet home

Dorothy’s symptoms remained flu-like and mild and she too has recovered.

However, about two weeks after the Austin discharged him, both Les and his wife are still feeling fatigue - a result widely reported by others who have had the disease.

“Dorothy is still feeling tired,” he says. “I’ve felt weak.

“I’m gradually getting stronger. But the thing really knocked me around.”

Les is a member of the Melbourne SCI community who has been living with an incomplete C2-4 spinal cord injury since 2016. Author Ian Baker is Communications Coordinator with AQA Spire.

Tags: Blog, Health & Wellbeing