Living with Pulmonary Hypertension (PH)

Life with PH can be challenging — for both the person living with the condition and those who support them. Understanding what this journey looks like helps build awareness, compassion, and connection.

The daily challenges of Pulmonary Hypertension

For people living with Pulmonary Hypertension (PH), each day can bring its own set of physical and emotional challenges. These challenges can affect energy levels, the ability to carry out daily activities, and the general ease of social and work life. 

Adapting to daily life with PH may mean:¹

Simplifying the daily routine to conserve energy
Tracking general health and reactions to medication between appointments
Understanding how to communicate workplace needs to accommodate PH/PAH
Following a diet and understanding nutritional needs
Maintaining an active lifestyle without overexerting the body

While PH can be life-altering, it doesn’t define a person’s identity. Many people living with PH find ways to live meaningfully — by pacing themselves, building a strong support network, and working closely with healthcare teams.

President, PHA Europe

“I felt the ground being pulled out from under my feet. In that moment you no longer know how your life will look like, and you lose your self-confidence.”

The hidden journey of loved ones and caregivers

Caring for someone with PH is often an invisible role — one filled with love, responsibility, and emotional complexity. Whether you're a partner, parent, sibling, or close friend, your support makes a difference every day. 

As a caregiver, you may experience:² 

Emotional pressure, including worry, guilt, or helplessness
Stress and exhaustion, especially when balancing care with work or family life
A sense of uncertainty, not knowing what’s ahead or how to plan
Isolation, from friends, routines, or previous parts of life

These feelings are valid — and you’re not alone. It’s important for caregivers to look after their own wellbeing, seek support when needed, and stay informed. Talking to others in similar roles can make a big difference.

How patient organizations can support

Patient organizations play a vital role in the PH community — offering support, connection, and trusted information for those affected by PH. 

Whether you’re newly diagnosed, caring for someone with PH, or navigating life with the condition day to day, these organizations can help by: 

Providing reliable information about the different classifications of PH, treatments, and self-care strategies
Creating space to share and hear lived experiences, so no one feels alone in their journey
Offering practical tools and emotional support to help manage symptoms, plan for daily life, and connect with  healthcare services
Advocating for awareness and earlier diagnosis, helping to improve outcomes for future patients

Getting involved with a patient group can mean gaining a sense of belonging, learning from others, and having a place to ask questions or simply be heard.