30 Days of PH: Planning for the Future – Pulmonary Hypertension News

Day 1 of 30 Days of PH Topic: Planning for the Future

This is Hannahs story @hrolsn

Ive always been a planner; I dream about the future, I make lists, I research all my options and then I make it happen. At 19 years old I was going constantly, a full time student, involved in several organizations, working part time, really enjoying my freedom and thinking about what I thought the next season of my life would be all about. Then I was diagnosed with Pulmonary Arterial Hypertension.

I had never felt fear like that before and, while I am so grateful to have access to the best doctors (shout out UTSW in Dallas) and effective medications, I was dreading all of the losses I knew were heading my way. It felt like my future had dimmed and all of my ambitions now had to be tailored to include doctors, treatment (so many medications) and endless testing. These changes were not welcome, and I really struggled with depression and fear.

Well, Ive been a PAH-er for 8 years this December and during that time Ive gotten married, moved to a new state, graduated with my bachelors and masters in social work and earned my LMSW. I become a foster parent to a sweet, sweet babe, and am closer to God, my family, and friends; because of and despite the hardships chronic illness has brought.

PAH and subcutaneous remodulin have created some incredible challenges. Some losses cant be planned around but the future for PAHers is still bright! I hope everyone, chronic illness in tow, is able to work towards one ambition this year.

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Colleen Steele was born and raised in New Jersey and received a Bachelor of Arts in English from Immaculata University in 1994. Currently, 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 the age of 14, he received a heart and double-lung transplant. He has experienced many bumps in the road but for the most part, he is doing well and living life to the fullest. Colleens 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, Life As A Caregiver column, Colleen is open and honest about caring for her son, his experiences living with PH, and life post-transplant. It is her ambition to educate and inspire others facing similar challenges that her family has battled and survived.

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30 Days of PH: Planning for the Future - Pulmonary Hypertension News