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It was 2 a.m., and I was waiting to have my nose packed for a bleed that had been going on for hours, a result of blood thinners and oxygen that I used to experience from time to time. I remember hoping to get back to my college…
A certain responsibility comes with being diagnosed with a rare disease. Because we know the details of our illnesses best, it is up to us to educate the world about them, so that greater knowledge and investment can be brought to our communities. This leaves me wondering what story I…
My grandma’s favorite story to tell about me is when I was 5 years old and she was staying with my siblings and me while my parents went on a short trip. A home nurse was summoned one morning to take care of my central line and prepare the…
As I prepare for a small diagnostic procedure this week, I’m noticing that my anxiety has skyrocketed. This is happening for two reasons. The first is that I have a full memory bank of physically uncomfortable and painful procedures that have made me quite sensitive. My years with illness have…
The memory is impeccably clear in my mind, tied up tightly in the damp smell of chlorine. I’m sitting on a bench in a humid concrete room while my peers splash boisterously around in the pool. They in their swimsuits, me in the required gym uniform. They, “normal.” Me, “the…
When we hear the question “Did you pack everything but the kitchen sink?” my family’s answer has always leaned toward “Yes.” Since being diagnosed with pulmonary hypertension (PH) in 1999, my family has never been able to travel lightly. But the efforts we’ve put into traveling have always outweighed the…
When I was younger, my life with pulmonary hypertension (PH) was busy. I was active in dance, softball, and the arts. I was an engaged student and had an active social life. We took family trips and made many memories. I lived a full childhood in tandem with my progressing…
“What’s the one thing you wish people knew about your transplant journey?” It’s one of the most thoughtful and thought-provoking questions I’ve ever been asked. It was posed to me six months after the momentous discharge that followed my traumatic heart-lung transplant. I remember looking up at my friend…
I didn’t truly realize how messy of a person I was until I went to college and spent more than four years living in small spaces with others. Growing up, my room would always become quickly disorganized, but this was typical teenage behavior no different than my older siblings’. Every…
The need for adaptation in my life began so quietly I often didn’t notice the accommodations I required. I started dancing at a young age, and at the end of each dance season, we had a big recital with different costumes for each performance. This created a problem when considering…
I still remember sitting on the couch with my mom on the eve of my 15th birthday. We were talking about how old I was getting, and after a brief pause, she said softly, “Every year for you is a miracle, you know.” I don’t remember how I responded, but…
On May 21, I celebrated 22 years of survival. On that day many years ago, I underwent a heart catheterization. Halfway through, doctors came out to inform my parents that the only diagnosis option was pulmonary hypertension (PH). My parents had previously been told that this was the worst-case…
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