Adult PH Patients


Roham Zamanian, MD, Director, Adult Pulmonary Hypertension Program and Juliana Liu, RN, MSN, ANP-c, Program Manager, Adult Pulmonary Hypertension Program

Clinical Care

Pulmonary vascular disease is a complex and increasingly diagnosed disease state. In pulmonary hypertension, the blood pressure in the pulmonary (lung) arteries is abnormally high. The arteries resist the pressure and react by narrowing, thus causing the right side of the heart to become enlarged due to the increased workload of pumping blood against this resistance.

Primary pulmonary hypertension is a disease of the pulmonary circulation, predominantly affecting young adults. Secondary causes of pulmonary hypertension are very common and include such diverse entities as congenital heart disease, connective tissue diseases, pulmonary fibrosis, emphysema and liver disease. Fifteen years ago pulmonary hypertension was a uniformly progressive and fatal disease and while exciting new treatments have been developed since then, pulmonary hypertension remains a life threatening illness without a known cure. The Vera Moulton Wall Center is one of the only centers in the western United States offering services to both children and adults with pulmonary hypertension.

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Linking clinical research and state-of-the-art treatment, Stanford is internationally recognized for excellence in the diagnosis and treatment of patients with cardiopulmonary disease. The first heart-lung transplant in the world was performed at Stanford in a patient with pulmonary hypertension. Since then, cardiologists and pulmonologists at Stanford have been at the forefront of new developments in the treatment of pulmonary hypertension and in evaluating new pharmacologic agents which offer potentially promising therapeutic benefits. Working in conjunction with the lung and heart-lung transplant program, clinical trials are being conducted, using agents that may function as a bridge to transplantation, or as palliative therapy for patients with severe end-stage pulmonary hypertension who are not appropriate transplant candidates.

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A Closer Look

Social Work Referral & Consultation

The Wall Center has dedicated adult and pediatric clinical social workers who work closely with patients, families and other support persons to identify a patient's diverse non-medical needs and to provide education, community resource referrals, and counsel for those dealing with a Pulmonary Hypertension diagnosis. They are an essential component of the clinical team who attend to PH patients in the hospital and in our outpatient clinics. Clinical social workers also provide input on financial and entitlement benefit programs; coordination of community supports; crisis intervention; psychological support; substance use recovery and mental health referrals; and promotion of each individual's strengths to best cope with one's medical situation. 
Our social work also hosts a monthly PH Support Group for patients and caregivers which is open to both Stanford and non-Stanford patients.  

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 hour 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

 

Support Group Meeting

11:30 am- 12:30 pm
Every 2nd Tuesday of the month (unless otherwise noted)

PH Support Group Meetings are held on Zoom.

For more information, email Allyson Rupp or call 650.683.5145 for the link.

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. 

 

Affiliated programs