30 Days of PH: Teen Life Post-Transplant

Written by Jen Cueva |

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Day 2 of 30 Days of PH ⁣⠀ Topic: Teen life post-transplant ⁣⠀ ⁣⠀ This is Sarah’s story @my_journey_with_ph⁣⠀ ⁣⠀ My name is Sarah, and I was diagnosed with Pulmonary Hypertension at birth. I’m now 15 years old, and can finally say that I’m now PH free! This past 1 ½- 2 years I was going downhill. I was in and out of the hospital, finding out that my pressures were just increasing more, eventually reaching over 200. ⁣⠀ ⁣⠀ The transplant was being talked about more often. I was terrified, nervous, worried, and devastated. But under all of that was a glimmer of hope that everything would be ok. I knew that I had to trust in God. I was listed for transplant two weeks this past summer. I received the call on July 17, 2019. I was wheeled back at about 5:00 PM. Saying goodbye to my family was the hardest part. I didn’t know if I would see them again, I was bawling my eyes out and so was everyone else. ⁣⠀ ⁣⠀ I’m now three months post-transplant. I can say it’s been the hardest, but most rewarding three months ever. I’ve had to learn all new symptoms, medicines, how to breathe, how to walk, how to use my diaphragm correctly, and tons more. I’ve been able to experience running and swimming. I've experienced going to school and walking up the stairs, not needing oxygen at night, and being able to hang out with my friends. I am grateful for every bit of it, all of these things that I haven’t been able to do my entire life. Thank you, donor, for making my impossible, possible. You and I will make the most valuable and rewarding memories in this lifetime. ???? ⁣⠀ #30daysofPH ⁣⠀ #doublelungtransplant⁣⠀ #pulmonaryhypertension ⁣⠀ #phawarenessmonth

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Jen Cueva avatar Jen Cueva

About the Author

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.

Tags

Daily living Pulmonary arterial hypertension Pulmonary Hypertension Awareness Month Quality of life Transplant


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