Guides for Living with Pulmonary Hypertension

Download  to learn about what to expect and how to move forward if you or someone in your family is living with pulmonary hypertension.

“A Guide for Teens” Available for download only.
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“A Guide for the Newly Diagnosed” Available for download only.
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“A Guide for Parents” Available for download only.
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“A Guide for Caregivers” Available for download only.
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“A Guide for Long-Term Survivors” Available for download only.
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The following items are free to download. Physical copies may be ordered for selected materials using the order form at the bottom of the page.

In Your Time of Sorrow: A Bereavement Resource

In Your Time of Sorrow explains that bereaved family members – those experiencing the death of a loved one – are not alone and that they remain a welcome part of the PHA community. This resource also lists ways in which a bereaved person can memorialize their loved one through PHA, for example by havingtheir loved one’s name listed in Pathlight magazine’s Passages section or volunteering for PHA in their memory. Readers will also find other PHA support resources and information about other organizations that specialize in grief and bereavement.

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Living With PH: A Guide to Intimacy

DISCLAIMER:  This guide has been created for adult members of the PH community interested in or engaged in physically intimate and/or sexual activity and contains sexually explicit information including references to sexuality and sex — both written and in images. PHA respects that it is the parents’ responsibility to teach their own beliefs about these topics to their children and it is not the intent ofPHA to promote or distribute this guide to children under the age of 18 without parental approval. As part of our mission, however, PHA makes its educational/information resources generally available through our website and store.

This resource is not designed to be a substitute for medical advice. As with any physical activity, you should talk to your doctor about whether you are healthy enough to engage in sex or any of the other activities described in this resource. PHA makes no warranty or guarantee as to the effectiveness of the methods described within this guide or that the activities are safe for all individuals. You assume full responsibility for how you choose to use this resource.

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Navigating Pulmonary Hypertension: A Guide for Newly Diagnosed Patients

The Pulmonary Hypertension Association’s (PHA’s) new publication, “Navigating Pulmonary Hypertension: A Guide for Newly Diagnosed Patients” is designed for individuals with pulmonary hypertension (PH) and their loved ones to find answers, support and hope during the first few weeks, months or years after a PH diagnosis. The resource provides an overview of diagnosis, treatment, symptoms and quality of life, as well as checklists, resources and questions to ask doctors.

Order your copy on the Newly Diagnosed page >

The New Normal

This book is designed to be both a resource and a source of reflection, with stories representing a cross section of patients across gender, race, age and type of PH. Journal prompts are included to empower people with PH to find your voice and your strength.

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The following items are free to download. Physical copies may be ordered for selected materials using the order form at the bottom of the page.

Persistent Pulmonary Hypertension of Newborns

Persistent pulmonary hypertension of the newborn (PPHN) is a serious condition that affects some infants’ oxygen levels after birth. The condition occurs when blood vessels in the lungs don’t open fully at birth. This handout addresses the prevalence of PPHN, risk factors, treatment and recovery.

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Pediatric Pulmonary Hypertension:
A guide to resources for parents and families

An overview of pediatric PH, includes information about finding an a PH care center with expertise in pediatric PH, ways to connect with other families, resources to help plan school and much more.

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PH Facts Wallet Card

The PHA Wallet Card describes PH, including common symptoms and risks and directs readers to the PHA website to learn more about the disease. This wallet card can be shared with those who may be at risk for developing PH from an associated disease or who exhibit symptoms. People with PH are not alone and PHA can help.

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The following items are free to download. Physical copies may be ordered for selected materials using the order form at the bottom of the page.

Someone I Love Has PH

Geared to ages 10 to 14, this booklet explains PH for to children teenagers who have an adult in their life diagnosed with PH

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What You Need to Know After a Pulmonary Embolism

Between 0.5% and 5% of people who experience a pulmonary embolism (PE) later develop chronic thromboembolic PH (CTEPH). If you or someone you care for have had a PE, learn about the risks for CTEPH as well as its signs, symptoms, diagnostic tests and treatments.

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The Pulmonary Hypertension Association is unable to send free material to addresses outside of the United States.  Please email us at gro.noitaicossAHP@lanoitanretnI if you have any questions.