30 Days of PH: Learning to Be PHabulously Independent

Brinley and Gus. (Photo courtesy of Brinley Marks)

Day 25 of 30

This is Brinley Marks’ story:

On Jan. 15, 2020, I was a happy 14-year-old in gym class.

You’re probably wondering how I know what I was doing that day. In fact, I remember everything about it until I collapsed. I remember everything going fuzzy, my hearing getting muffled, not knowing where I was — and the next thing I knew, I was in the hospital.

Since I was only 14, I felt overwhelmed by all the doctors, nurses, and specialists coming in and out of my hospital room and everything happening so fast. I felt like a lab rat with all the tests. Don’t get me wrong, everyone was so nice and explained everything to me, but keep in mind, I’d not yet completed my first semester of grade 10!

I’d heard of patient advocacy before because my mom worked in healthcare, so I knew the exact moment I had to advocate for myself. It was when 11 nurses tried to start an IV, my nurse practitioner (NP) talked to my mom, a respirologist looked at my tonsils, and silent tears streamed down my face. Before the hospital, I hadn’t even had a dental procedure, so this was a lot for me. I told my mom how I was feeling, and after that, my NP had the room cleared. I was so thankful my voice was heard.

Throughout my journey, I’ve lost some independence. But I’m learning how to gain it back, just in ways that are healthy, safe, and, let’s be honest, won’t give my parents an anxiety attack. I’m a teenager, after all, so letting me do teenage things is hard enough, never mind being a sick teenager doing them.

My parents have listened to my needs so I can feel independent and make some of my own decisions as I start transitioning into adult care. The love and support from everyone has shown me the importance of being surrounded by positive people, as well as never to ignore my needs.

I always thought I would become a doctor or a lawyer (I know, how cliche), but all of that has changed. My life’s work will be focused on raising awareness and speaking on the importance of patient advocacy for pulmonary hypertension, so PHighters always feel heard.

Pulmonary Hypertension News’ 30 Days of PH campaign will publish one story per day for PH Awareness Month in November. Follow us on Facebook and Instagram for more stories like this, using the hashtag #30DaysofPH, or read the full series.