Virus shows people what we are living with every day, says Cork CF sufferer – Echo Live

WELCOME to our world.

That is how Castlemartyr-based David Conroy, who suffers from CF (Cystic Fibrosis), sums up the nationwide response to the coronavirus pandemic.

CF is a condition that affects the lungs and digestive system, and David says the hygiene, coughing and sneezing etiquette that is now universally necessary to contain the new virus, is what he and other CF sufferers have to take heed of all the time.

Thankfully, David, aged 46, hasnt been struck by coronavirus, and he is self-isolating.

Those of us with CF are high risk, he says, If we get coronavirus, its a very different story, so most of my CF community are self-isolating at the moment.

He is using his time wisely, trying to encourage the public to support Cystic Fibrosis Irelands fund-raising day,

David is unusual in that he was only diagnosed with CF at the age of 43.

Most people get their diagnosis of CF at birth, he says, There are many different genotypes. My one affects you later in life.

David constantly contracted chest infections and his weight used to fluctuate a lot as well.

My GP sent me to the Mercy Hospital in October, 2016. I was tested for absolutely everything there. They also did genetic testing and I got the result in February, 2017, with the diagnosis.

Like a lot of people, I had heard of CF but I didnt know what it entailed. Luckily the Cystic Fibrosis Unit at CUH is beyond amazing. Theyre like family in that the care and support they give you is phenomenal.

Its still very early days for me. I had a lot of pulmonary chest infections as a child but back then, there was no such thing as genetic testing.

With modern technology, theres a lot more older people getting diagnosed now.

Both of Davids parents have the particular genotype that has a 25% chance of resulting in a child with CF. David is the only one in his family that has the condition. How does it impact on daily life?

Theres no getting out of bed, jumping in the shower and running out to work, he explains.

I have to set my alarm to get up two hours before I need to go out. I have to use nebulisers to soften the mucus I carry in my lungs, to open up the airways.

Some days, I get really good clearance. After my shower and breakfast, I do physiotherapy myself. I might do it for half an hour. Other days it could take longer.

The physiotherapy should clear out your lungs. I do that twice a day, morning and evening. I also take antibiotics. Im on a high dose of antibiotics at the moment as I have a chest infection.

The Cystic Fibrosis Unit team at CUH has taught David how to take intravenous antibiotics.

Normally, when people need intervention, they go to hospital. I do it at home myself, he says.

David says that no two CF patients are the same. He leads a normal life, apart from the morning regime.

If you saw me walking down the street, you wouldnt think there was anything wrong with me. People are surprised when I tell them I have CF.

Breathlessness is part of the condition.

But its very individual, David adds.

Some patients are completely amazing. They were born to run and they do phenomenal amounts of training. Their fitness would be quite good. It all depends on the severity of the illness.

Taking exercise is of utmost importance, he says,

You have to keep working on your lungs. Thats why Cystic Fibrosis Ireland is so important. It helps us with grants for joining gyms and buying equipment for home.

For exercise, David walks his dog, for an hour or an hour and a half every day.

Its not like normal walking. You have to push yourself. Exercise is as important as the medication.

There are such fantastic areas around Castlemartyr for walks. I get out as much as I can. I live my life. I go on holidays.

Every so often, I need to go into hospital for maybe a two-week period for antibiotics. That might happen once a year.

David works part-time as a hairdresser in a Cork city salon.

He says: I do two half days. The social aspect of it is very important and its good to have a routine. I get out, go to work and meet people. I worked full time as a stylist until I got my diagnosis.

David says the drugs for CF are fantastic, adding: I started on a drug called Kalydeco which has completely transformed my life. It has reduced the amount of chest infections I get. It has given me back my life.

Ireland has the highest incidence of CF per capita in the world. There are approximately 1,400 people with the condition nationwide.

David says it is probably down to our small genetic pool.

Back a few generations, people married their relatives, he says.

He says that coronavirus is unbelievable the rest of the world is now kind of seeing what CF people live with every day.

If were on a bus or in a train and we hear someone coughing, were very aware that the person could give you a heavy cold or a chest infection that could curtail you for two to three weeks.

For us, hand hygiene is very important all the time. Keeping yourself well and not going near people that could possibly give you a cold is important.

If any of my family has a cold or a chest infection, I dont see them until it has passed.

Like many people lately, David sings the praises of Netflix for keeping him entertained and informed while he is in isolation.

His partner, Finbar Cuthbert, isnt working at the moment as he had to temporarily shut down his business in Youghal, Sage Cafe, because of coronavirus.

We have a box in Sage Cafe for donations for Cystic Fibrosis Ireland, says David.

People in Youghal have been phenomenally generous.

Money raised for the organisation go towards patient grants for supports such as counselling, fertility treatment and transplant assessment.

It also helps towards the cost of a number of CF clinical staff in hospitals and it helps raise the 1m needed for the new CF in-patient unit at Beaumont Hospital.

Cystic Fibrosis Irelands annual 65 Roses Day on April 10 has changed due to coronavirus. It has gone virtual with public fund-raising replaced by an online appeal.

The public can donate online at www. 65RosesDay.ie.

Or people can text 65ROSES to 50300 to donate 2.

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Virus shows people what we are living with every day, says Cork CF sufferer - Echo Live