In this powerful and deeply personal episode, I sit down with my friend Lisa to share a story that very few people — and even fewer medical professionals — truly understand. Lisa lives with pulmonary arterial hypertension (PAH) and a congenital heart defect, and she faced one of the most high-risk situations imaginable: pregnancy with PAH.

Lisa walks us through her journey, from navigating her congenital heart defect to the moment she learned she was pregnant, and the critical role her PAH pregnancy specialist team played in saving her life and her baby’s. She opens up about the physical toll, the emotional rollercoaster, and the lasting impact on her body and family.

While her story has a happy ending, Lisa is candid about the realities: this is not something she would recommend to others living with PAH because of the immense risks and sacrifices involved. Her honesty offers a rare, unfiltered look at why having the right medical team isn’t just important — it’s the difference between life and death.

If you’ve ever wondered what pregnancy with PAH truly looks like, or why specialized care matters so much in rare diseases, this episode is a must-listen.

Key Takeaways

* Pregnancy with PAH is extremely high-risk and requires a medical team experienced in both PAH and maternal-fetal medicine.

* Specialist care saves lives — Lisa credits her survival (and her baby’s) to her highly skilled, coordinated care team.

* Long-term impact is real — pregnancy can have lasting effects on heart and lung health for people with PAH and can in worst case scenarios result in life-threatening situations for both the mother and the baby.

* Personal choice matters — while Lisa’s story has a positive ending, she stresses that it’s not a path she would recommend due to the risks.

Helpful Links

* Pulmonary Hypertension Association – Pregnancy and PH

* American Heart Association – Congenital Heart Defects

* PAH Resources for Patients

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