Patient Resources


Pulmonary Hypertension is a complex disease that requires daily self-management, making healthy choices, monitoring your symptoms, and taking medications as prescribed. Upon being diagnosed it is not uncommon to experience a certain amount of fear. Learning about your disease and taking an active role in your disease management will help you feel better and help reduce your chance of developing complications. It is also important to speak regularly with your PH care team to problem solve, reduce risks for complications and cope with lifestyle changes.

FAQs

Adult PH Support Group

Research has shown that patients who seek out and participate in support groups are more likely to be better equipped to handle the stress of their chronic illness and of their daily lives; to feel more in control of their symptoms, condition, and fate; and to experience better emotional well-being than individuals who do not utilize this important resource. Better survival statistics and quality of life perception, as well as enhanced ability to adjust to complex medical regimens have been tied to having routine connections with people who share similar circumstances, diagnoses, and concerns. The Wall Center's Adult Pulmonary Hypertension support group for adult patients and support persons has been meeting monthly since June 2001. The group is facilitated by the Wall Center's licensed clinical social worker. The intent of the group is to provide emotional support and education to patients, caregivers and other support persons who are confronting the challenges of living with this chronic, progressive and potentially life-threatening diagnosis. 

The group meets for 1.5 hours and is aimed at providing psycho-education, pertinent PH-related information and resources, and peer support to enhance coping, reduce isolation and demonstrate hope. Previous groups have focused on quality of life issues, considering and coping with complex medical therapies and conditions, disability matters, impacts of illness on relationships, advances in PH research, caregiver stress and coping, legacy building, and emergency preparedness. All participants are respected for their unique opinions and contributions, and encouraged to share their insights, perspective and experiences in a safe environment. Additionally, the professional staff of the Wall Center is available as a resource to the support group, often presenting on specific PH-related topics that are of interest and have been recommended by participants. 

For further information regarding the support group, please contact the Wall Center at (650)724-9255 or 800-640-9255 or wallcenter@stanford.edu

About the Center

The Wall Center seeks to enhance the lives of patients with pulmonary vascular disease by providing the highest level of clinical care, providing advanced training opportunities for physicians and other health care providers, and participating in clinical and bench-top research in pulmonary vascular disease. 

 

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