Amy Earnest (center) with her nurse practitioner Amy Chybowski and her pulmonologist James Runo of University of Wisconsin Hospital.
Amy Earnest was diagnosed with pulmonary arterial hypertension shortly after she was born in 1994. After traveling to several states for care, she’s learned the importance of choosing the right doctor and advocating for herself. As a long-term survivor of PAH, Earnest, of East Moline, Illinois, shares her story to spread awareness and connect with others.
‘I know I’m here for a purpose and want to live every day to the fullest.’
By Amy Earnest
Throughout my life, doctors have tried to estimate how long I have left to live. At first, they said I wouldn’t live past age 5. When I started middle school, they said I wouldn’t make it to high school.
After high school graduation, I was told I wouldn’t make it past age 20. Last year, I celebrated my 30th birthday. The doctors have given up trying to guess how long I have left to live, because I kept defying the odds.
Access to care
I want to share my story with others so they can learn from my experience and have an easier time navigating their condition. In 2017, I had a severe reaction to Uptravi (selexipag), which a doctor in Iowa City prescribed to me. I tried to advocate for myself and explain there was something wrong, but I was told I just had anxiety. That’s when I decided to find a new doctor.
I traveled to St. Louis, Chicago and Milwaukee before finally meeting pulmonologist James Runo in Madison, Wisconsin. I truly believe he saved my life by getting me off Uptravi and on Tyvaso (inhaled treprostinil). He’s the only doctor I trust to help me manage my condition, so I don’t mind the three-hour drive to his office every six months.
Finding community
As I’ve connected with other PH patients, I’ve learned how difficult survivors’ guilt can be. I’ve had PH my entire life and it’s unfair that I can live with it for so many years while this terrible disease takes my friends away.
In 2015, I started a Facebook group called the Zebra Warriors to create a space for people in the PH community. I wanted them to feel comfortable to ask questions, share updates about their loved ones and come together during times of grief. I’ve made many friends through this group and enjoy moderating conversations.
In addition to the Zebra Warriors, I make YouTube and TikTok videos to spread PH awareness and create fun content. In May (World PH Day) and November (PH Awareness Month), I film videos about living with PH and teaching other people about the disease.
The rest of the year, I film make-up tutorials, nighttime routines, gaming content and anything else that brings me joy. I stay active and love hiking along the Mississippi River and in Black Hawk State Park. I know I’m here for a purpose and want to live every day to the fullest.
