Stanford School of Medicine
Vera Moulton Wall Center–

Patient Resources

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Patient Support Group

Recent studies have shown that patients who participate in support groups are more likely to feel better equipped to handle the stress of chronic and progressive illness, and sometimes to extend the length of their lives. It has also been shown that patients are more likely to be able to deal with complicated medical routines and therapies, if they connect regularly with other patients who are in similar circumstances for discussion and mutual support. The Wall Center Pulmonary Hypertension Support Group for patients and family members has been meeting monthly since June of 2001. The group is facilitated by the Wall Center clinical social worker. The purpose of the group is to provide emotional support and education to patients and family caregivers who are confronting the challenges of living with this chronic, progressive and potentially life-threatening diagnosis.

The group meets for 1 and 1/2 hours and follows an informal, round-table discussion format, in which members raise and discuss topics related to pulmonary hypertension. Previous sessions have focused on quality of life issues, coping with complex medical therapies, disability and increasing dependency needs. Additionally, the professional staff of the Wall Center has made themselves available to the support group to discuss specific issues, such as research activities and Flolan related questions, as support group participants have raised them.

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

Social Work Consultation

The department of social services works closely with patients and their families to assure that the proper support is provided for those coping with illness. Our dedicated social workers provide emotional support, coordination of care and assistance with financial and logistical issues.

Stanford Health Library

The Stanford Health Library is a free and open-to-the-public consumer health information library that provides scientifically-based medical information to help people make informed decision about their health and health care. The Health Library will create a personalized health research packet for you if you are unable to find the information you are seeking on their site.

Frequently Asked Questions

What is Pulmonary Hyptertension (PH)?

Pulmonary hypertension means literally "high blood pressure within the lungs". This can range from mild to very severe. The symptoms of PH are nonspecific which can make it hard to diagnose. Symptoms include, but are not limited to, shortness of breath, (especially noticed with exercise), chest discomfort, lightheadedness, and passing out. It is usually most reliably diagnosed with a cardiac echocardiogram. With timely recognition and appropriate treatment patients with PH can experience marked improvement in their ability to do daily activities and exercise, quality of life and lengthened survival. PH is a very serious illness, but new treatments developed in the last few years hold new promise for patients with this condition.

What is Pulmonary Vascular Disease?

Pulmonary vascular disease includes a spectrum of conditions or diseases in which the most serious and common complication is pulmonary hypertension. While pulmonary hypertension can occur without any obvious relationship to other diseases ("primary pulmonary hypertension") the majority of cases of pulmonary hypertension are seen in association with a variety of medical conditions and/or toxic exposures. These conditions may include blood clots in the lungs, congenital heart disease, heart and lung diseases which cause low oxygen levels, connective tissue or rheumatologic diseases, sleep apnea, liver disease, HIV infection and exposure to drugs such as amphetamines and diet pills.

There are approximately 32,000 cases new cases of congenital heart disease per year in the United States and 1.5 million new cases worldwide. A large proportion of these patients has abnormalities of the pulmonary vasculature, including pulmonary hypertension. While pulmonary hypertension is now less common with earlier diagnosis of congenital heart disease there still exists a significant population of adults with this debilitating illness.

The estimated annual incidence of primary pulmonary hypertension in the United States and Europe is 1-3 cases per million people per year. The incidence among users of certain diet pills may be as high as 25-50 persons per million per year. Pulmonary hypertension frequently complicates the rheumatologic condition known as scleroderma (which includes patients with the CREST syndrome). In addition, up to 20% of patients with systemic lupus may develop pulmonary hypertension. Pulmonary hypertension can arise in the setting of both acute and chronic pulmonary embolism (blood clots to the lungs) and can represent a fatal complication of this condition. The annual incidence of fatal pulmonary embolism in the U.S. is estimated to be around 200,000, half of which were potentially curable with appropriate treatment. Chronic disease with pulmonary embolism is far less common, but is also often undiagnosed though potentially curable with surgery or other interventions.

What are the treatments for Pulmonary Hypertension?

The treatment for PH depends on the type of PH and its severity, as well as on other health problems each patient may have. Based on each individual's medical condition and their response to previous medications they are placed on a regimen that is best suited for them. There is no "one size fits all" approach to PH. Treatments may range from oral medications, exercise programs, inhaled medications and in some cases, medications that are delivered directly into the blood stream via a catheter or into the subcutaneous layer of skin through a small catheter. In some cases surgery or other cardiac interventions might be recommended.

The response to PH medicines can vary from person to person. Blood tests and echocardiograms, among other tests, are used to monitor how well each person is doing. Patients at Stanford and other PH centers also have access to some of the latest drug treatment through ongoing clinical trials of new PH drugs. Stanford is also currently doing basic science research in the lab to better understand PH and help develop new therapies for treatment.

Can I continue to work with Pulmonary Hypertension?

This is a question that many patients ask once they are diagnoses with PH. While many patients affected by PH stop working there are some patients who feel well enough to continue to work. Whether or not you continue to work is a decision that you and your health care provider should make together depending on your individual circumstances. If you are doing well on treatment, and feel generally strong, then working might be a good option.

Articles for Patients

Coping Strategies for PH Patients - Martha Russel, LCSW

• Become aware of how you are feeling (emotionally and physically) on a regular basis. “Check-in” with yourself whenever possible so that feelings can be acknowledged and expressed. This simple process will allow you to let these feelings go eventually and move on.

PH Travel Tips - Follow these tips for a stress-free summer trip

Adapted from the Pulmonary Hypertension Association’s Pulmonary Hypertension: A Patient’s Survival Guide (Second Edition)

Caring for the Caregiver

Caring for someone with PH can be difficult, both physically and emotionally. If you are caregiver to a PH patient, try these strategies to maintain balance in your own life while you continue to assist your loved one:

PH patients can also assist their caregivers in maintaining a balanced life through the following steps:

Adapted from the Pulmonary Hypertension Association’s Pulmonary Hypertension: A Patient’s Survival Guide

Links to More Information about PH

 

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