Living with Cystic Fibrosis Amid COVID-19 By Ashleigh Allerton

The wake of the COVID-19 pandemic has left many of us feeling anxious among the uncertainty and eager for normality to return. For the more vulnerable, life amid COVID-19 has been an even more detrimental experience of fear, isolation, and survival.

My brother, Zachery Allerton, has grown up with an underlying degree of uncertainty around his future - a feeling that many may now recognise since COVID-19 first plagued countries across the world. As troubling as the thought may seem to others, for our family, it has been a concern alive in our home everyday. After being diagnosed with Cystic Fibrosis (CF), and later CF related liver disease, Zach was placed into the 5% of cases that often did not live past their teenage years. Now 22, he has overcome expectations time and time again, but it was not long ago that doctors placed a mere 6 months to the rest of his life. Then came COVID-19.

With each flu season comes extra caution. Many of the precautions people have been exhibiting now in combatting COVID-19 are ones of long-time habit for my family - for a bad cough could mean weeks in hospital for Zach. With a pandemic around, life became even more isolating than it was prior.

When I asked Zach how he felt at the beginning of the pandemic, he described it as an overwhelming time.

"I was told to stay clear of other people, even family, and not to go outside or to certain places. At that time, I didn't have much of an idea how this would later affect me."

Last year, Zach moved from our North Queensland hometown to live with me in Brisbane, where he would be closer to his hospital. This was a readjustment for us both; me taking on responsibility as his carer, and him having to increase his treatment with regular visits to clinic at The Prince Charles Hospital. By the time we found our footing with the new routines, it was just as quickly uprooted by the influx of COVID-19 cases in Brisbane.

Back in February, Queensland Health reported on multiple COVID-19 patients being treated at The Prince Charles Hospital. With Zach's regular appointments coming to a holt, his access to hospital care took the form of over-the-phone consultations and drive through pharmacies. Before this, Zach would see his doctors, dieticians, physiotherapists and support workers as often as weekly or fortnightly. While he has been fortunate to have access to medication and more recently, at home lung function monitoring equipment, his only contact with medical staff during this time has been through phone conversation.

In a statement from the Adult Cystic Fibrosis Centre at The Prince Charles Hospital on April 20, they spoke on telephone consultations, with plans to conduct clinic through video conferencing in the near future. While there were no video consultations for Zach, the hospital has since worked on reintroducing patients back to the hospital.

Back in late March when cases were on a relentless rise, I stayed separately to Zach to reduce the risk of passing any sickness on to him. I was still new to taking on the responsibility as his carer by myself, so it was a particularly stressful time when COVID-19 first arrived on our shores. With our Dad 12 hours away working in our NQ hometown, it was then that our Mum, Tina, came to take care of him in my absence.

Like it would be for any mum, the thought of your child's health being at risk can be deeply troubling. This has been especially poignant for my Mum, for Zach is at a higher risk than most and the consequences pose more detrimental. For Zach, isolating has been more a matter of surviving than anything else. When my Mum spoke on her biggest concern for Zach during this time of isolation, she said:

"It would have to be his mental health. It's already isolating enough when you're living with CF, so to add this on top is a lot to handle, sometimes too much.
"As a parent, I'm just doing what I have to. I'm doing my best to be present and be his support, so he knows I'm always here for him. I want to help him through this time as best as I can."

She also had concerns over the efficiency of the phone consultations and the possible health problems that could arise after the lack of clinic appointments.

"Not having his regular face-to-face care has been worrying because it regards both his physical and mental health. How accurate can a phone consultation really be? It's easier to say 'I'm fine' rather than to ask for help," she said.

Although he has been looking forward to his normal routines and clinic visits returning, Zach has felt well looked after by the hospital staff during COVID-19.

"The drive through pharmacy meant I had access to enough medication without needing to go inside the hospital, so I felt safer. And the lung function test machine they sent me meant I could use it before my phone consultations with doctors and update them," he said.

Perhaps the scariest aspect of our family's experience during COVID-19 has been a fear of the unknown. For Zach, he explained that his isolation experience during this time has been more intense than ever.

"It's definitely been scary. Not listening to the media too much helped because it was overwhelming sometimes. But I've been lucky to have Mum around to help get me through it.

"I've been distracting myself by playing computer games, reading manga and watching anime movies and TV shows. But I do really miss things like going out for sushi and of course, being with all of my family."

In caring for Zach, our Mum has gone to extra lengths to keep him safe, which included keeping a safe distance between her and Zach as much as possible. When leaving the house, upon returning she would ensure her hands, and anything touched was properly cleaned. Certain areas in the house were cleaned daily, as were the household items that were used regularly.

"I've had this fear around not doing things thoroughly enough and potentially passing the virus onto Zach if I was to get it myself. And then there's the fear of not knowing if he would be able to fight it if that did happen," she said.

When Zach and I talked on what he found most difficult about it all, he said:

"Being a close family, it was hard not having everyone around and having to be more cautious around Mum. She was always nervous about possibly catching the virus and passing it onto me. It was really hard for all of us."

I can tell you that Zach is big on hugging, so distance between family was quite a struggle for him. But with COVID-19 cases settling and restrictions easing in recent weeks, the occasional hug has felt slightly less dangerous.

Zach has thankfully been able to safely return to The Prince Charles Hospital as of last week and has since been admitted for treatment. However, despite returning home myself, his visitation is limited to just our Mum, meaning Zach and I are yet to reunite.

It seems as though the worst of his experience during COVID-19 is slowly coming to an end, and hopefully he can soon return to an abundance of family hugs and trips out for sushi.