Find answers to questions about living with PH in the Survival Guide

Survival Guide

Pulmonary Hypertension: A Patient’s Survival Guide is a resource for patients and caregivers written by PH patient Gail Boyer Hayes and published by the Pulmonary Hypertension Association. Known informally as the "Survival Guide,” this important book serves as a soup-to-nuts guide for patients and their loved ones covering topics like the mechanics of PH, the latest treatments, patient care and lifestyle issues.

The latest fifth edition, 2016 is now available in a printed format. Order your print copy today:

Order a Survival Guide

Electronic version coming soon. Please check back for updates.

Chapters include:

  • The Magic of PHA
  • How Do I Really Know I’ve Got PH? *
  • PH: The Other High Blood Pressure *
  • Who Gets PH? *
  • Conventional Medical Treatments *
  • PH Drugs: Prostanoids *
  • Other PH Drugs *
  • More On PH Drugs *
  • Surgical Treatments
  • Tell Me, Doc, How Long Do I Have?
  • Children and PH: Babies, Kids, Teens and Family Planning *
  • Caregiving
  • What to Eat When You Have PH
  • Dealing With Emergencies, Doctors, Colds and Flu
  • You’re Not the Only One with the Blues *
  • The Active Life: Working, Exercising, Traveling and Living
  • Insurance and Legal Matters *
  • Resources *
  • Appendices *
  • Glossary

*denotes chapter revised for the fifth edition, 2016 revision


Author, Gail Boyer Hayes, wrote the Survival Guide to help answer the questions that a newly diagnosed patient and his or her loved ones may have after leaving the doctor’s office.

The book frankly outlines difficult subjects like life expectancy and the risks of various treatments. Read anecdotes from other PH patients about coping with difficult situations and suggestions on how to make patients' and caregivers' lives easier, including advice on insurance coverage.

To keep the information in the Survival Guide up to date, the book is revised annually by a team of volunteer patient and medical writers under the guidance of Ron Oudiz, MD, the book’s medical editor. The most current version of the book is the fifth edition, 2016 revision.

Order a Survival Guide



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The information provided on the PHA website is provided for general information only. It is not intended as legal, medical or other professional advice, and should not be relied upon as a substitute for consultations with qualified professionals who are familiar with your individual needs. PHA does not endorse or recommend any commercial products or services.

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The National Organization for Rare Disorders (NORD) awarded PHA the Abbey S. Meyers Leadership Award in 2012 for outstanding service to PHA members in advocacy, education and other key areas.