30 Days of PH: Growing Up With PH

30 Days of PH: Growing Up With PH
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Day 13 of 30 Days of PH⁣
Topic: Growing Up With PH

This is Tatiana’s story @lolmamio531  

My life before I was diagnosed is significantly different from how I have to live my day to day life now. I was diagnosed with Pulmonary Arterial Hypertension (PAH) at age 5. It is believed that I had always had it, but they never found it until then.

Living out my life pre-diagnosis was hard. It seemed I could never keep up with everyone else around me even though I had given it everything in me to do so. The simplest of things like twirling in ballet made me breathless and practically gasping for air and complaining that my chest hurt. My parents would have me sit for a while until I felt up to going back to participating. We could never understand why I was unable to keep up. I’m a very independent person. Even from a young age I always wanted to do things on my own and that meant keeping up with my friends. But when doing activities, the fact is I would end up walking slowly behind my peers as they ran around playing. It made me feel incapable.

I could never understand what was so different about me from everyone else. I knew something about me was different compared to others, but I never let that stop me from doing what I wanted. When I got diagnosed and was told why everything was so hard for me to do, it all began to make sense. My doctors explained what I could no longer do and provided me with a regimen and list of my new treatments and pills. I didn’t know what to think of it. I just knew that everything was different now and I would never be the same.

I’m 14 years old now and know my limits. I know I can’t go to brick and mortar schooling due to my disease. But for the most part, I still don’t let my restrictions stop me from doing what I want to do. I also follow my regimen and do my treatments without resistance. I must admit that the same routine every day sometimes makes me feel like I’m living for my treatments instead of doing my treatments so I can live. It’s easy to forget and get caught up in the routine. Having PAH is hard, but it doesn’t stop me from living my life.

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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. 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, “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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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. 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, “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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