30 Days of PH: Grief

Written by Jen Cueva |

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Day 13 of 30 Days of PH⁣⠀ Topic: Grief⁣⠀ Evan shares her story of grief, @ladyevanne⁣⠀ ⁣⠀ Grief – is a word that is used to explain the pain of losing a loved one to death. The emptiness of not having a person in your daily life. Grief and PH are different in all aspects because when your son has been given the diagnosis, the grief of a life unlived is what you feel first as a mother. I never really thought about death, even though Sean reminded me time and time again that it could happen.⁣⠀ ⁣⠀ My son, Sean Wyman, was the poster boy of everything great about life with PH. He did everything he wanted and had a full life albeit a short one. On his 19th birthday, doctors said, “you have 6 to 18 months to live. Go home and get your affairs in order." So, he came home and sat. Immediately, we went through the testing for being put on the transplant list. But this was when you got on the list and prayed you were alive when your name reaches the top. ⁣⠀ ⁣⠀ He sat in a chair for a year, then he got up and said “I’m not dead yet,” and went back to school. First the Associate's degree, then the BA, MS, and finally his degree in Osteopathic Medicine. My son became a doctor! A healer! Unfortunately, death was closer than he or I thought. He died the day he was accepted for the third time for a transplant, a resident physician who changed lives just by being himself!⁣⠀ ⁣⠀ ⁣⠀ I was floored. Devastated to get the call that he was gone. It was unimaginable. Inconceivable. Complete denial on my part. Seeing his body sent me through shockwaves. I could accept it. I didn’t deal well at first with everything, then the Sean Wyman Superman was born from the grief of his loved ones. We had bracelets made in his honor, and they were sent all over the world. He created lips painted blue, and it became www.lipspaintedblue.com an explanation of PH for others.⁣⠀ ⁣⠀ ⁣⠀ Every moment of every day I miss my son. I honor him by sharing his story. If his name is said and he is remembered, he lives on. ⁣⠀ ⁣⠀ #30DaysofPH⁣⠀ ⁣⠀ #Grief

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About the Author

Jen Cueva Jen Cueva lives in sunny San Diego, California, with her husband and daughter. A former nurse, her life took an unexpected turn in 2005 when she was diagnosed with group 1 pulmonary hypertension (PH). That experience reshaped her purpose, transforming her journey into one of advocacy, connection, and hope. As Manager of Partnership Relations on the Bionews Advocacy team, Jen collaborates with rare disease communities to build bridges and strengthen support systems for patients and caregivers. She also serves as a forum moderator for *Pulmonary Hypertension News*, where she writes a biweekly column exploring the emotional landscape of living with PH, from resilience and gratitude to the quiet power of community. Whether she’s sharing stories that uplift or offering words that remind others they’re not alone, Jen finds meaning in helping people feel informed, empowered, and seen. When she’s not writing or advocating, you’ll likely find her at the beach, on a coffee date, or simply enjoying the laid-back San Diego sunshine. Together, we PHight stronger.

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30DaysofPH awareness grief


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