long term survivors
Coping with pulmonary hypertension (PH) over the long term means you have survived the ups and downs of a condition that may affect your daily life. Maintaining a career, nurturing healthy relationships and managing personal finances become more difficult when you have PH. Confronting the physical limitations and emotional stress of PH each day can also be an ongoing challenge.

The New Normal

Looking back on the period following their diagnosis, many long-term survivors can still vividly recall the period of grief and uncertainty that took place in the months after they learned they had PH.

After recovering from the initial shock of diagnosis, most survivors adjust to what some refer to as their “new normal.” Some people describe experiencing a “waking up” to the things that matter most, like family, nature, spirituality or giving back to the community.

While acceptance is an important step forward, life with chronic illness can be filled a continuing rollercoaster of uncertainties, changes and disruptions. Learning to cope with adversity and then begin again, is one of the major challenges of coping with PH over the long term.

Adapting and Moving Forward

Even after years of relatively stable health, every long-term survivor needs to be prepared for new health challenges. Many PH patients talk about their “new normal” as an empowered term to describe their ability to factor PH into a foundation for a new life — different from their old life, but no less full or meaningful. If you’ve been living with PH for years, you may have to adjust to another “new normal” on a regular basis. This constant reinvention of self can be physically and emotionally draining and requires an enormous amount of resilience.

Prepare for Change

To prepare for unexpected challenges, map out flexible action plans to manage change more proactively. Make a list of some of the unexpected changes you could encounter in the next year (e.g. health deterioration, loss of capacity, financial setback), and think about what you’d do to cope in each of those scenarios. You’ll never be able to predict the future, but even the process of planning for change can flex your resiliency muscles.

Make New Connections

Sharing experiences and exchanging information with others in the PH community can help you prepare for and manage new changes as they arise. Many PH patients feel a sense of relief when they meet people who are experiencing similar life challenges due to their illness. If you have yet to explore the PHA community, consider joining a PH support group, Facebook group or connecting with other patients online.

Turn to Loved Ones

Find ways to maintain relationships with friends and family members during both highs and lows to keep your support system intact. This means recognizing that relationships are a two-way street and your loved ones sometimes need your support, too.

Find New Purpose

Giving up one’s career for health reasons can feel devastating. But many long-term survivors establish new, positive identities by reflecting on what they believe in and carving out a part of each week to work toward a related goal. Choosing a goal or mission bigger than yourself can provide forward momentum, even during difficult times.

Consider Palliative Care

Palliative care is whole-person care for anyone with a serious illness that does not have a cure. Palliative care focuses on relief of symptoms, pain and stress through medical, social, mental and spiritual support. Palliative care specialists can also help with care coordination, advance directives and other “administrative” issues related to chronic disease care management. Palliative care is appropriate for any stage of a serious disease.

In this short video, Hilary M. DuBrock, M.D., shares who benefits from palliative care.

Learn more about palliative care through additional videos in PHA Classroom.

Cultivate Resilience

Coping as a long-term survivor isn’t always easy, but by seeking out support, balance, perspective and things you care about, it is possible to cultivate resilience so you can bounce back from the many challenges you’ll face on your journey.

Quick Tips

  • Allow for the highs and lows. It’s normal to experience periods of sadness and depression when living with a chronic illness over the long term, but they don’t last forever. Give yourself time to grieve, reflect and then move forward.
  • Prepare for change. Make a list of unexpected changes that could surface in the next year and map out an action plan for managing each possibility.
  • Be flexible. Remember that you’ll never be able to plan for every possibility. Expect the unexpected.
  • Get organized. Use PHA’s tips to organize your insurance information, prepare yourself and emergency medical personnel for emergencies, and organize information on your supplemental oxygen needs.
  • Educate your friends and family. Teach loved ones about your illness to build a strong PH support network, made up of people who understand your needs. Invite your friends and family to your doctors’ appointments and support group meetings.
  • Connect with others living with PH. Connect with other people living with PH through local support group meetings, Facebook groups and PHA email mentors.
  • Reflect on your purpose. Choosing a goal or mission bigger than yourself provides forward momentum, even during difficult times. Find a way to contribute your time and energy to something you believe in, whether it’s community service, a part-time craft business or a creative pursuit of your own devising.
  • Be real. Maintaining a positive outlook is one way many patients try to approach living with a chronic illness. At the same time, it’s important to acknowledge that life with PH can be difficult. and it’s okay to be sad or even angry at times. Be real about how you feel.
  • Find an outlet. Many people find solace in meditation, faith, humor, writing, hobbies and more. Find an outlet that you enjoy and that provides relief from life with PH.
  • If it gets to be too difficult, seek professional help. Talk to your doctors to get a list of mental health professionals in your area.

Kristen Holm, Ph.D., M.P.H., discusses the ways that lung disease may affect the emotional well-being of PH patients and families in this 40-minute video.

Additional Resources

Information from PHA

Support for PH Patients