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Opinion: 'A new cystic fibrosis drug means I'm the healthiest I've been for 20 years'

Ahead of 65 Roses Day tomorrow, med student Bevin Murphy outlines the tough year she’s had as a person with CF, and how a new drug has changed everything.

Bevin Murphy

TO SAY LIFE has changed over the past year would be an understatement. Living with a chronic lung condition in the middle of a global pandemic, initially placed fear in me like no other.

I was diagnosed with cystic fibrosis (CF) at six months old, and from then on have been in and out of hospital my whole life. I am now 26 years of age.

I have had some extremely challenging years with my health but things have started to turn a corner over the last five months and I’ll explain why later.

I remember the first day Covid came to Ireland and the sheer panic amongst my family. I decided a week before our first national lockdown that I would start isolating. I was terrified of Covid. I didn’t leave my house for weeks.

In the beginning, I never felt lonely. I didn’t miss my friends. I didn’t care about my social life. I just saw it as something I had to do in order to stay safe. So, I coped really well at the beginning.

I am grateful I was kept busy during that period with college. I am a medical student in the Royal College of Surgeons in Ireland (RCSI), so that distraction was very much welcomed.

As time went by, the frustration began creeping in. I needed social interaction again. I have always been an outgoing person and needed to be busy 24/7, so the weeks of isolation had started to take their toll on me.

Daily isolation

That being said, I still isolated as much as I could but I started going for walks again and doing the grocery shopping. Lockdown got particularly tough in July when my mom, who is my best friend, was diagnosed with cancer.

It’s times like these you need to be surrounded by friends and family, and not having that has been by far the hardest thing. A tight hug from a friend is the comfort blanket you need during hard times, and I was angry that Covid had taken that security away.

Having CF meant being extra careful all of the time, but you kind of live your life that way regardless so it becomes second nature. I spend a lot of time doing treatment to keep myself well.

Between physiotherapy and nebulised treatment, it could take me up to four hours a day, and this has been my reality from a very young age. Now in my mid-20s, for the first time in my life, my treatment regime is starting to reduce.

I started a new miracle drug in November called Kaftrio. I find it hard to put into words how much it has benefited me. I am the healthiest I have been in 20 years; I no longer feel the need for my baseline treatment all of the time. It’s as if I’ve been given a brand-new life and I couldn’t be more excited.

The new drug came at the right time. I went back to college in 2019 to study medicine, something I had always wanted to do, but I held myself back because of my condition.

Determination

After my Leaving Cert in 2012, I longed to become a doctor but, unfortunately, I was too unwell with a very low lung function, and would not have been able to study a demanding course like medicine.

Instead, I did a Bachelor of Science in Dublin City University, followed by a year-long postgraduate course in psychology, and then I worked for a few years. But that urge to study medicine stayed with me. In 2019, I decided I didn’t want to wait anymore, I had worked hard for years to build up my health through fitness and I finally felt ready, and started applying for medicine and sitting the entry exams.

Regardless, it has not been easy, the day of both the entrance exam and my interview I was an inpatient in St. Vincent’s Hospital due to an infection but forced myself out of the hospital bed to attend the exam and interview, both on two different occasions.

Even since starting in the RCSI, there have been many obstacles. In my first year, I had two hospital admissions, and I used to get a taxi from the hospital to attend my anatomy labs.

People used to think I was mad showing up, but when I get something in my head that I want to do, I will push myself to get it done regardless of what hills or mountains I have to climb to get there. I feel extremely lucky to witness first-hand what science can do for people.

This new drug has given me a new lease of life, and for that, I am eternally grateful. Science and medical innovation have given me so much in my 26 years, it is my turn to give that back.

The benefits of Kaftrio have given me the ability to run more than I have ever managed before. So, for that reason, myself and my amazing friends are doing a challenge to raise funds and awareness for Cystic Fibrosis Ireland.

We will be doing 65 minutes of movement every day for the month of April. We did similarly last year and we thoroughly enjoyed it. It gave everyone a lift during these difficult times and will hopefully get us that step closer to normality.

Our normal lives will resume again soon. Having recently received the Covid vaccine, I am hopeful that we are reaching the light at the end of the tunnel soon.

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Bevin Murphy is an ambassador for Cystic Fibrosis Ireland. Unfortunately, Cystic Fibrosis Ireland cannot proceed with their 65 Roses Day collections tomorrow, 9 April due to Covid-19. Please support people with cystic fibrosis on 65 Roses Day by donating online at 65rosesday.ie or taking part in a 65 Roses Challenge.

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Bevin Murphy

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