A Supportive Community Has Been Essential in My Health Journey
When I was 8 or 9 years old, the alarm of my IV pump went off in the middle of dance class. When you’re placed on an IV medication for pulmonary hypertension (PH), you are heavily educated on its short half-life and the reality that any pause in medication delivery can be deadly.
We lived about 20 minutes from the studio, so when my instructor called the cellphone number listed in my file, my mom almost tore a door off our car when rushing out of the garage in a panic.
In a moment of clear thinking, she remembered that my friend’s older sister was scheduled for carpool pickup that night. This family thought of me as one of its own throughout childhood. Each member was intimately familiar with my illness and the high-risk nature of my IV medications.
My mom immediately called the sister, who was close to the studio, and was able to talk her through the necessary steps to restart my pump. The sister stayed with me until my mom was able to arrive. We’ve joked about this story over the years, but in the moment, it was far from funny.
Trusting the world with a medically fragile child is a terrifying task, something I’ve come to understand as I’ve grown up and engaged in conversations with my mother. In hindsight, we’re so thankful for the close-knit community that surrounded me during my more vulnerable years.
I had several close friends, including one in that dance class with me, who kept ice packs for my medications in her refrigerator so that I didn’t have to bring extras each time I came over. While this is a very niche example of the kindness extended to me by these families, it’s one that any patient on Flolan (epoprostenol GM) will understand well.
These families were patient with both me and my mother. They took great care to follow any instructions my mother offered them regarding when I needed to take pills or when it was too hot for me to be outside. They were eager to care for me to the best of their ability. But they also didn’t treat me any different from the other kids in their household.
This feeling of trust extended into college. Throughout freshman year, I lived with one of my best friends from high school. She was familiar with my medication routine, central line care, and nighttime oxygen use, never blinking an eye at any of it. She’s also the person who drove me to the ER several times in the middle of the night during those years away from home.
My support group expanded as college carried on. My friend and I found four other roommates, and the six of us all lived together for the rest of college, and even after graduating. To this day, these are my closest friends, and they’re all intimately knowledgeable about my healthcare journey.
I’m so grateful for these positive experiences of friendship throughout my youth. I personally feel that these experiences, along with my parents’ willingness to educate others, allowed me to find the right people to entrust with my story later in life. It also taught me how to advocate for what I require from others in a relationship. Given the wonderful people whom I’ve since come to call friends, these early examples certainly served me well.
It’s not always easy to trust others with my medical history and future, but having such positive precedents in my life makes it marginally easier for me to open up to new relationships.
Thinking about these friendships now is a poignant reminder that it takes a village. I’m so grateful on behalf of both myself and my parents that we had families in my life they could trust to take me into their homes, even overnight, knowing I’d be cared for. In the fight against chronic illness, we cannot do it alone, and it’s such a blessing that I’ve never had to.
Note: Pulmonary Hypertension News is strictly a news and information website about the disease. It does not provide medical advice, diagnosis, or treatment. This content is not intended to be a substitute for professional medical advice, diagnosis, or treatment. Always seek the advice of your physician or other qualified health provider with any questions you may have regarding a medical condition. Never disregard professional medical advice or delay in seeking it because of something you have read on this website. The opinions expressed in this column are not those of Pulmonary Hypertension News or its parent company, Bionews, and are intended to spark discussion about issues pertaining to pulmonary hypertension.
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