Risk of infection is nothing new for people with cystic fibrosis

Over the past year, Trisha Duffy Barber (42) has watched how the public has learned about the science of viruses, how they spread and how some people are more vulnerable to becoming very ill.

“Suddenly, the whole population has the awareness that people with cystic fibrosis have as they grow up with risks of infections,” says the 42-year-old speech and language therapist. “People know about droplet transmission, airborne viruses and the importance of washing your hands to prevent infection spreading; things we knew about for years.”

Duffy Barber was quarantining following a ski trip to Andorra with her husband and 10-year-old son when the novel coronavirus arrived in Ireland. Working in a HSE community centre, she was one of the first on her team to work from home. "Some staff were re-deployed to contact tracing and Covid-19 test centres, but I began doing video and phone calls with children who needed speech and language therapy, and their parents."

Speech and language therapy works best face to face, as client and therapist interact with each other, so Duffy Barber says her role became more of a supportive one, helping parents with their child’s learning.

One of my kids asked for a ‘yes day’. My resolve is weakening

---

Write your way out of boredom in this never-ending lockdown

---

Defence Forces to play role in running quarantine system

---

“So many people were combining work and childcare which is stressful. But many were also more present with their children and could find little opportunities to work with their children.”

Personally, she coped well with remote working, going for walks and runs in local parks near her home in Lucan, Co Dublin. However, in September, she had appendicitis and needed treatment. "I had no choice but to go to hospital so I was admitted to a cystic fibrosis ward in St Vincent's Hospital. To the credit of the hospital staff, I felt very safe and I was treated with intravenous antibiotics."

Back working from home again, Duffy Barber was grateful to receive her Covid vaccination in January with other healthcare workers. She hopes the post-pandemic work culture will encourage people who are unwell to work from home when offices reopen.

“Often in the past, people came into work when they were unwell but I hope there will be less pressure on people to do so. There also needs to be acknowledgement that people working from home are treated the same as their colleagues. In fact, research has shown that many people worked harder and were more productive working from home during Covid,” she says.

As vice-president of Cystic Fibrosis Ireland, she says the organisation has held webinars for CF sufferers throughout the pandemic. “With technology more accessible now, there have been lots of opportunities to socialise in a different way. I think going forward, more people will be able to attend events online as well as in person.”

I was very worried that I would bring [Covid] home. I couldn't kiss Kiera at night

Louise Lynam has had to be extremely attentive to her personal infection control measures throughout the Covid-19 pandemic to protect her nine-year-old daughter, Kiera, who has cystic fibrosis. "At the start, I was very worried that I would bring it home. I couldn't kiss Kiera at night and I would sit at the end of her bed," she says.

Lynam works in the emergency department at the Midlands Regional Hospital in Portlaoise. "There is a Covid and non-Covid side in the A&E and I could be working on either side. Every shift, I made sure I had full personal protective equipment [PPE] on and that when I finished, I took it off properly. I would change my clothes at work, put them in a bag and then put them straight into the washing machine when I got home before I had a shower."

Due to her vigilance – and a bit of luck thrown in – Lynam wasn’t a suspected Covid case or a close contact of a case since the pandemic hit in March 2020. “I distanced myself from colleagues and I sat in my car for lunch. There were outbreaks in the medical, surgical and day wards but A&E has been very careful and there haven’t been any outbreaks there,” she says.

Kiera has been well throughout the pandemic. “She has a strong immune system. She never picked up a cold or a cough. She has been on Orkambi [the breakthrough drug suitable for some CF patients] for the last three years and she has more energy and is not on antibiotics as often,” says Lynam. Having missed out on her gymnastic and dance classes during the pandemic, Kiera got a trampoline to exercise on from home. Her older sister, Jessica (15), has also learned to be careful around her sister during the pandemic.

Although Louise was one of the first healthcare workers to be vaccinated in January 2021, she still believes she can’t let her guard down. “I feel a lot safer but I still wear the full PPE and wash my hands and change my clothes before I leave. There is still a chance that I could carry it home.”

The way people are living now is similar to the way many people with cystic fibrosis normally live

Evan Scully says nothing much has changed for him during the Covid-19 pandemic. "The way people are living now is similar to the way many people with cystic fibrosis normally live. If there are bugs around, I don't go to crowded places. I don't go to the pub at weekends anyway," he says.

Scully’s physical therapy clinic in Navan, Co Meath has remained open since the summer of 2020. He wears a mask when treating clients and leaves half an hour between clients to sanitise the room. Each person fills out a questionnaire about symptoms and travel before being called into the clinic. “I do see fewer people because of that but I coach runners online too,” he says.

He believes more people got fit during lockdown. “Exercise has a huge part to play for everyone. Doing a couch to 5km, a time trial or just going out for a walk gives people structure and purpose to their day if they’ve lost their job in lockdown,” he says.

He does, however, think runners have been given a hard time during the pandemic. “I think there has been a lot of fear built up over the past year. I give people a wide berth when I’m running. I don’t see any greater risk of catching Covid from runners than from people who are out of breath walking or two friends talking loud at each other outdoors.”

Scully got fitter during lockdown and did a marathon within his 5km in February – running a 10km diameter of his 5km radius four times.

He has been to hospital for check-ups twice and started on new medication in March. “I didn’t think the drug would do much as I’m pretty healthy but it’s been ground-breaking. Usually, I cough for five to 10 minutes after I run – in fact, some people shouted at me once saying ‘He has Covid’ – and I cough when I get up in the morning and going to bed because of the change in air temperature. But I don’t cough any more. It’s unbelievable. I can even laugh now without coughing.”

When we spoke, Scully was still waiting to get his Covid vaccination as he wasn’t deemed to be high risk among those with CF. “There are about 750 adults with CF in Ireland; surely, it would make more sense to vaccinate us all at once,” he says.

65 Roses Day

Cystic fibrosis is an inherited chronic disease that primarily affects the lungs and the digestive system. A defective gene causes the body to produce unusually sticky mucus that clogs the lungs and obstructs the pancreas, impacting on the breakdown and absorption of food. People with CF experience a range of symptoms including frequent lung infections, persistent coughing, wheezing and shortness of breath, poor growth and weight gain in spite of a good appetite.

Cystic Fibrosis Ireland provides information, advice and advocacy for people with CF and their families, carries out research and funds specialist CF clinical posts in hospitals. Its annual fundraising day, 65 Roses Day, takes place on Friday, April 9th. The public are invited to partake in a virtual 65 Roses team challenge by walking 6.5km, doing 65,000 steps or cycling 65km. See 65RosesDay.ie and cfireland.ie