Mason More Talks About His Cystic Fibrosis
Don’t Waste Time
In September of 2016, while I was going to school in London, I was on Bumble (a dating app) when I matched with a guy named Mason. Mason was also in London for school, at the London Beauty Academy. Immediately I was intrigued with him. I couldn’t tell you what, but there was something about him that made it impossible to stop thinking about him.
Soon after we started talking, Mason told me that he has Cystic Fibrosis (CF). To learn more about CF you can read my fact-based post from earlier in the month, where I talk about CF in detail. Despite knowing what CF entailed for our future, I couldn’t walk away. I wouldn’t. Soon after that we met, started dating, and then Mason was hospitalized for a month.
Despite the bad memories I’ve had in hospitals, I knew that I had to go visit him because when I was in the hospital I wanted people to visit me too. And honestly I have never been happier that I decided to do something. We had a wonderful couple of days together in the hospital. It was awesome being able to make him laugh and enjoy himself while hospitalized.
I’ve been so amazed by the strength that he has and how he chooses to live his life despite his CF. Getting to know him has honestly changed my life and I’m honoured to know that my first published piece on The Mighty was about him and the impact he has had on my life.
I wanted people who follow me to have a chance to get to know Mason and a little bit about his CF journey including when he was diagnosed, how CF affects his daily life, what hospitalization is like, as well as all the good, the bad, and the ugly.
BRIANNA BENTON: When did you get diagnosed?
MASON MORE: I was diagnosed when I was 9 months old because I kept on having gastric issues and my mom knew obviously that something was not right with a baby that was going to the bathroom and eating twice as much as a normal one should. So she went to a doctor, who wasn’t very good, and had to argue with him for months that something wasn’t right with her baby. After enough time and persistence, the doctor finally did a simple $25 test (which is why he didn’t want to do it—he didn’t want to spend the money on the test) to see if I had CF, and I did.
BB: How does CF affect your daily life?
MM: When I was a kid, growing up, it really didn’t affect me other than the digestive issues that CF has. At that point my lungs hadn’t degenerated so I just had to do some basic daily therapies that were simple and fairly quick (30–45 minutes so it wasn’t too bad). As I got older and the lungs started to degenerate I started getting more lung infections and things like that. Usually I would just take oral antibiotics but sometimes the lung infection would get bad enough that I would need to go into the hospital and get IV antibiotics for at least 2 weeks. Nowadays, the amount of drugs that I have to take to get the same baseline effects has increased.
BB: How many times have you been hospitalized?
MM: One, two...seven, (counting the scars on his arms) and then eight. I've been hospitalized 8 times.
BB: You can tell that from the scars on your arm?
MM: Yeah, I have scars on my arm from the PICC line (a form of giving IV drugs over a longer duration of a few days). Every time it leaves a scar on my arm. So I have 7 scars and then there’s the first time I was hospitalized where I just took oral antibiotics.
BB: What’s a typical hospital stay like?
MM: Generally, they don’t have a room for me on a respiratory ward. So you get admitted into the ER for the first 24 hours when a bed opens up. At which point they wheel you up into a respiratory ward where you stay for at least 2 weeks (I have had to stay for a month before). After a few days they put the PICC line in once they have a time in the radiology lab to put it in. Until then they use IVs to get the drugs into you. Once you’re there you basically are just fed a high-calorie diet. There will be respiratory therapists that do breathing exercises and things with me. The doctors check on me every day. Other than that, it’s just waiting out the course of the antibiotics in the hospital. I usually spend my time watching Netflix and the last time I brought in my Playstation and I gamed until I was ready to go home.
BB: What’s the hardest part about being hospitalized?
MM: When it’s a 2-week hospitalization you’re mostly just bored. But when it’s a longer one, you start to miss people’s company because you’re in isolation for the entire time. And then only time that someone comes to see you is when a nurse or doctor has to see you. And they are masked up and in full isolation gear, which makes you feel alienated.
BB: What’s the most difficult thing about having CF?
MM: There’s lots of difficult things. For one, it’s harder to breathe and do day-to-day activities because of the breathing. You always have to be minding your Enzymes and puffers. So I have to remember my Enzymes and take them when I eat or else my stomach hurts. And you have to take puffers and pills every 12 hours.
BB: Despite all the hardships that come with having CF, have there been any positive things?
MM: I had to go on really expensive antibiotics, he suggested I go to Shopper’s Drug Mart and get optimum points because in 1 month worth of drug, I got 24,000 points. At least I could get that despite all the bad things about CF. Except they don’t do that anymore.
The only other positive thing is that I live my life better than most people because I know that I have a finite number of years that I get so I don’t waste them on stupid stuff and don’t waste time doing things.