It’s a nickname for cystic fibrosis (CF) that was first used in 1965 when a young boy overheard his mother talking about his disease, which he was unaware of at the time and mispronounced as “65 roses.”
In the 1960s, most people with CF would not have made it through high school. Due to modern medical advancements, though, we’re graduating from university and having careers.
Not an average university experience
Cystic fibrosis is a progressive genetic disease that causes damage to the lungs and digestive system by affecting the cells that produce sweat, mucus and enzymes, resulting in chronic infections and malnutrition.
The daily care and treatment of CF can seem like a full-time job itself some days, so to take on a full-time university career comes with a whole other set of challenges that the average student wouldn’t have to face.
As a nursing student, my first semester had many long days away from campus with classes in the Health Sciences Centre, sometimes starting as early as 8 a.m. and not ending till the supper hour. Which by itself is hard.
“It’s important to do to multiple sessions of physiotherapy throughout the day, as it helps keep the lungs clear and makes breathing easier.”
But when I’m trying to fit in three or four sessions of physiotherapy, with breathing exercises to help maintain lung function, make sure I’m eating properly, exercising and getting extra hours of sleep because daily activities can be exhausting with CF, it starts to become a whole other battle.
Mornings always start early, usually around 6 a.m., so I can fit in my medication, inhalations and physiotherapy and make sure to fill my backpack with enough snacks and pills for the day.
Luckily, I have an amazing CF team, that includes a nurse practitioner, physiotherapist, social worker, doctor and pharmacist, who all have always been ready to go the extra mile to help me succeed.
So when it’s time for more physiotherapy around midday, my nurse practitioner is happy to let me use their office space. It’s important to do to multiple sessions of physiotherapy throughout the day, as it helps keep the lungs clear and makes breathing easier.
One of the things I am most thankful for in all of this is that I am never fighting this battle alone.
While being a nursing student with CF comes with its challenges, it also comes with its perks.
Being surrounded by other nursing students means I am never short of friends who are quick to understand some of the more medical challenges I face. They are some of the most empathetic people I could have by my side.
From delivering home-cooked dinners to residence on stormy nights, offering many rides to and from classes, picking up prescriptions and making sure I never fall behind on notes and assignments when I have to miss class due to hospitalizations, I could not have found a better group of friends anywhere.
“I could not imagine doing it alone.”
The last year has by far been my hardest, but at the same time also the most rewarding.
To have so many amazing people to fall back on has made all the difference in being able to pursue my education and follow my passion. I could not imagine doing it alone.
I am more excited than ever to see what the new year has to bring and to get back to classes and new clinical experiences, partly because of a new medication I have started called Trikafta.
Drugs like Trikafta and other medical advancements have been made possible through fundraising groups like Shinerama, Canada’s largest post-secondary CF fundraiser.
While Trikafta is not a cure for the CF community, it’s the closest we have ever come and has completely changed my life. Most drugs for CF treat the symptoms as they occur, but Trikafta corrects the underlying defective CFTR protein so the body works as it normally would and helps prevents symptoms from even occurring.
The difference between who I was a few months ago and who I am today is like night and day.
I am no longer just surviving from day to day. I am thriving.