30 Days of PH: 19 Years And Counting

by Colleen Steele | November 10, 2020

Day 10 of 30 Days of PH⁣
Topic: 19 Years And Counting

This is Shannon’s story

19 years on May 31, 2001, my life changed forever. I was a couple of days away from graduating kindergarten and my parents were told I had roughly three to six months to live. They decided to take me home and let me graduate kindergarten and start the journey of fighting Pulmonary Hypertension the next day. In 2001, there were no treatments for PH approved for children. I was put on the nitric treatment, but it wasn’t a good fit because I was so reactive to it. My doctor put me on Flolan and some oral meds, and since that day I’ve been on a mixture of oral meds and IV treatment.

Having PH has given me so many opportunities like meeting the Boston Red Sox, going to The Hole in the Wall Gang Camp and meeting Paul Newman and his wife Joanne, going to Florida on a Make-A-Wish trip, meeting bands like R5 and Honor Society, meeting Rachel Platten and Chloe Temtchine, and so many more experiences. I have also climbed an outdoor rock wall and went zip lining down a 25-foot zipline. I graduated from community college, earned an associate degree, and moved on to UMASS Boston for my bachelor’s. These moments are ones I cherish most because they are a part of my story.

Whoever thought 19 years later I would still be putting up a good fight and enjoying life with my new cat. To anyone just starting their PH journey or struggling with their own, I leave you with some wise words from an iconic Pixar character: “Just Keep Swimming.”

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About the Author

Colleen Steele Colleen Steele was born and raised in New Jersey, and received a bachelor of arts in English from Immaculata University in 1994. She lives in Washington state with her husband and two sons. Her oldest child was diagnosed with idiopathic pulmonary arterial hypertension when he was 8. At 14, he received a heart and double-lung transplant. Colleen’s love for writing, experience advocating for her son, and determination to spread PH awareness inspired her to become a columnist and forums moderator for Pulmonary Hypertension News in 2019. In her column, “Life as a Caregiver,” Colleen is open and honest about caring for her son, his PH experiences, and life post-transplant. It is her ambition to educate and inspire others facing similar challenges.