Living with PAH with decades of perspective, I am choosing to thrive

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by BioNews Staff |

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An illustration for November's Community Spotlight on people living with pulmonary hypertension.
A woman balances on a rock.

Sophia Esteves balances on a rock in this photo from July. (Photos courtesy of Sophia Esteves)

This is Sophia Esteves’ story:

I’ve felt at times that there were no words to describe the roller coaster ride that is life with pulmonary arterial hypertension (PAH). I can still remember the first time a doctor told me to find someone to raise my daughter because I would only have four years to live. I felt like I had died in that moment because I was being asked to forget who I was as a person and become a patient.

I went into denial by continuing to do what I wanted when I wanted, missing important appointments. I learned quickly that PAH had plans for me and that if I didn’t respect that, I wouldn’t be around long enough to see my daughter graduate high school or college. 

A woman sits cross-legged next to a window.

Sophia Esteves meditates in this 2021 photograph.

Part of learning to live with PAH was to learn to love myself through the heartbreak and depression that would wash over me like heavy waves. I came to realize I’d been using all my energy to water the weeds instead of the flowers, validating more the idea of dying, rather than living. That had to change fast if I was to get the most out of my life. 

Daniel Esteves, Sophia’s father, and her daughter, Cassandria Alvarado, May 2022

Sophia Esteves’ daughter, Cassandria Alvarado, sits at a table with her grandfather, Daniel Esteves. 

I knew I must use my voice and experiences to help others find their light through their own journey. I’ve heard some in our community say that some online support groups are too negative. We need to show grace and compassion for others who may not always know how or what to share. We aren’t perfect; we are just human. We never know what someone is thinking or feeling, or what their daily health challenges might be.

A woman takes part in an exercise test.

Sophia Esteves takes part in an exercise test procedure is 2021. 

 Living with a chronic illness can bring many new feelings and the things people say may catch us off guard. For instance, when someone says, “You are too young to be sick,” I realize they are really saying “I wish you didn’t have to carry this enormous load at such a young age.” Or when they say, “Have you considered a transplant or another medication?” I know they are really telling me they want me to find some relief. I try not to take things personally, but if their considerate comments trigger me, I know I may need to do some self-reflection or healing on the soft spots they’ve helped expose.

This year, I set boundaries for myself that have helped me to improve my mental health and fitness. I know I am not alone and I want all my PHriends to know that too. If there’s one thing PAH has taught me, it is to never give up!

In recognition of Pulmonary Hypertension Awareness Month in November, the PH Community Spotlight campaign features a series of stories highlighting the real-life experiences of people affected by PH, written in their own words. Follow us on Facebook and Instagram for more stories like this, using the hashtag #PHSpotlight, or read the full series.

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