30 Days of PH: Pediatric PH Patients Inspire Nurse Practitioner

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by Colleen Steele |

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Day 9 of 30 Days of PH⁣
Topic: Nurse Practitioner Inspired By Pediatric Patients⁣

This is Michelle’s story

Since November is Pulmonary Hypertension (PH) awareness month, I want to honor the children with PH who inspire me. 

Over the last 14 years, working as a nurse practitioner in the PH program at Lucile Packard Children’s Hospital Stanford, I have watched with pride as my patients overcome the challenges of a PH diagnosis. Each child faces these hurdles in his or her own unique way, but always with courage and resilience. 

The following moments are just a few examples. A 4-year-old on subQ treprostinil (Remodulin) treats his pump almost like an appendage, making sure to take it with him wherever he goes, allaying his mother’s concern about using the pump. A 7-year-old child with PH, who requires continuous supplemental oxygen, happily runs around the schoolyard with her friends, while the school nursing assistant races behind with the portable oxygen tank. An 11-year-old on IV treprostinil dons a donated dry suit and wades into a swimming pool for the first time in her life, without fear of her pump or central line getting wet or malfunctioning. A young teenager who transitioned from subQ to oral treprostinil but fails with worsening symptoms, returns to subQ therapy with little complaint, assuring me that she understands that the subQ medication is best for her despite its inconveniences. And finally, a teenager, determined to move out of the house for college, learns how to successfully place her own subQ catheter, and prepare and manage her treprostinil and pump. 

These amazing patients, and many more like them, thrive in their young lives despite facing challenges that no one deserves. I am truly privileged and honored to be a part of their lives, and hope that I can positively impact their lives in some small way, as they have mine.

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About the Author

Colleen Steele avatar
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 lived in Washington State for 20 years 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 returned to New Jersey in 2023 after her loving husband of almost 28 years passed away. Colleen’s love for writing, experience advocating for her son, and determination to spread PH awareness inspired her to become a columnist and forum 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. Her ambition is to educate and inspire others facing similar challenges and encourage them, through her column, to share their journey. If you are a caregiver and would like to be interviewed, contact Colleen at [email protected].

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30DaysofPH, PH Awareness Month

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