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

Pulmonary Hypertension: A Patient’s 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.

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


Gail Boyer Hayes initially wrote the Survival Guide to help answer questions that a newly-diagnosed patient and his or her loved ones may have after leaving the doctor’s office. Today, it has become a resource for everyone who has PH — no matter how long they have been living with the disease.

The book tackles subject matters such as 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 either annually or biennially by a team of volunteer patient and medical writers under the guidance of Ron Oudiz, M.D., the book’s medical content editor. The most current version of the book is the fifth edition, 2016 revision.