Life with pulmonary arterial hypertension treatment

In this session, our Lived Experience Panel answer questions from the community and share their strategies for living their best life with Pulmonary Arterial Hypertension (PAH).

Tegan was diagnosed with pulmonary hypertension (PH) at the age of five. Currently, she is on triple therapy and works full-time as a nurse in a cancer hospital. She enjoys living life and looks forward to traveling, one of her passions.

Kate was diagnosed with idiopathic pulmonary hypertension shortly after her daughter was born. She traces her symptoms back to that time and has been managing the condition for 28 years with progressively added medications. Kate is happy to share her experiences and fight the disease.

Kylie was diagnosed with PH in October 2006, after the birth of her second child. She is also on triple therapy and was a chef until about five years ago. Kylie now focuses on raising awareness about the disease.

Lucy was diagnosed in 1988. She used to be a primary school teacher and now keeps busy with various activities. Lucy is open to haring her story to help support other people.

The panel discussed how they cope with PH and other conditions. Tegan emphasised the importance of being organised and practical. Kate and Kylie shared their experiences of managing PH alongside family life, highlighting the importance of support from family and friends.

The panel also addressed the challenges of explaining a rare condition to others. The panel agreed that there is a time and place for such explanations, and it’s important to be selective about who to share details with. Kate shared her approach to raising awareness through fun and informative activities.

Traveling with oxygen and managing side effects of treatments were also discussed. Lucy shared tips for traveling with oxygen, including using a portable oxygen concentrator and taking extra medications. The panel emphasised the importance of being kind to oneself and listening to one’s body, especially when dealing with fatigue and other side effects.

Overall, the panellists highlighted the importance of support, organisation, and self-compassion in managing pulmonary hypertension. They encouraged patients to seek reliable resources and stay connected with their healthcare team.