In this webinar, our Pulmonary Arterial Hypertension panel answer some of the most asked questions from the community. They share their experiences of living with the condition, the challenges they have encountered, their coping strategies and their stories of strength and hope.
Kate was diagnosed with pulmonary hypertension (PH) shortly after her daughter’s birth. Despite being very fit before, she struggled to regain her fitness and experienced fainting episodes, leading to her diagnosis. Her daughter is now an adult, and Kate is grateful to see her grow up and have her own children.
Lucy was diagnosed in 1988 when there were no specific PH medications. She was initially given a prognosis of two years but has been stable on IV medications for about 12 years. Quick diagnosis within six months played a significant role in her survival.
Tegan was diagnosed at five years old after initially being thought to have epilepsy. Physical activity triggered seizures, leading to her PH diagnosis. She started on lower doses of adult medications and has benefited from medical advancements over the years.
Kylie was diagnosed in 2006 after an 18-month period of declining health. Initially misdiagnosed with asthma, she eventually landed in the hospital with right heart failure. She has been on IV medications since 2008 and emphasises the importance of listening to your gut and advocating for yourself.
The panellists shared their tips for managing fatigue, emphasising the importance of listening to your body and accepting limitations. They also discussed exercise, with suggestions ranging from walking and yoga to more creative activities like hula hooping and dancing. Pulmonary rehabilitation was highlighted as a valuable resource.
For managing breathlessness, the panellists recommended planning activities around energy levels and taking breaks when needed. They also shared practical tips for living with an IV infusion, such as using hooks or stools in the shower and carrying a plan of action for emergencies.
During the COVID-19 pandemic, the panellists took extra precautions, with some experiencing heightened anxiety initially. However, being triple vaccinated has helped alleviate some of the stress. They emphasised the importance of living life while taking necessary precautions.
Overall, the panellists highlighted the importance of self-care, planning, and having a strong support network to manage PH effectively.
Was this page helpful?
Good job! Please give your positive feedback
How could we improve this post? Please Help us.
