Cystic Fibrosis (CF) is a genetically inherited disease that primarily affects the lungs and pancreas. In Ireland, we have one of the highest rates per capita in the world.
Benat Broderick, a 15-year-old advocate and ambassador writes about his typical daily routine with Cystic Fibrosis as an inpatient at Crumlin Hospital.
Going to the hospital is a scary time for loads of children and parents but when you go in as often as me you get used to it quite quickly and you learn how to be independent and how to do things for yourself, but the one thing that I love about coming into hospital is the staff. I know all the nurses, doctors, cleaners, health care assistants, and everyone else on the CF team, so well that’s it’s like a second home for when I come in.
The respect I have for everyone in the hospital is extremely strong. Everybody who works here has such a vital and important job in providing care for me and making sure everything works.
Weekdays in the hospital go by surprisingly fast with the amount of things that go on and the one thing that everyone says to me is "it must be boring in hospital" but in reality with the amount of people I see on a day makes the admission and days go by so fast.
On a typical hospital weekday, I would be up around 8:30am get myself ready for when breakfast comes around at 9am. It's at around this time that I will find out my nurse for the day as they are usually in setting up my IV’s up and giving me the medication and nebulisers that I need.
Once I finish taking my nebuliser, at around 10am, the physio comes down and we do my PEP (Airway Clearance) which is a handheld mouthpiece that I breathe in and then out against a resister for about 15 minutes.
After the physiotherapist leaves, I then take the rest of my nebulisers and tablets and then I tend to be just finishing my IV so usually the nurses are in disconnecting them.
Once I’m off my IVs, at around 11am, the teacher arrives and we do some work for about 30 minutes.
After that, depending on the day, someone from the Respiratory Department will come up to do my lung function to see if I’m improving whilst I’m on the IVs.
Things tend to get a bit quieter in the afternoon. At around 2pm, I go for physical exercise with the physiotherapist for about 30 minutes. Later, the consultant comes around with there team to review me and to listen to my chest to see how I’m doing and if any changes need to be made.
Again, depending on the day, the dietitian may pop down and we will go through my diet and see how we can get my weight up and see if the foods I’m eating are good enough as I need over 3,000-4,000 calories per day, which is quite a lot (as much a rugby player).
Some days phlebotomy may be down to take blood but after 4pm, everything is quiet and I get to have my dinner and relax for the night.
Then, the next day, it all happens again.
- Written by Benat Broderick
If you would like to support 65 Roses Day the National Fundraising Day for Cystic Fibrosis Ireland on Friday, April 12th, 2019 you can visit www.65rosesday.ie.
