Vera Moulton Wall Center–

Patient Resources

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Patient Support Group

Adult Patient/ Caregiver Support Group
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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. 

Pediatric Support Group

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

Social Work 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. 

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 decisions 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?

Many patients may be concerned about their physical ability to continue working following a PH diagnosis.  While many people affected by PH may stop working for various reasons, there are some who feel well-enough and feel able to perform within safe physical guidelines to continue their employment.  Whether or not you continue to work outside of the home is a decision that you and your health care team should make together, depending on your individual circumstances.  Factors influencing this decision may include your specific symptoms and how well they are managed, your treatment needs and physical response to therapies, physical limitations and type of work you do, and personal financial and practical considerations.   There are resources available to help people with disabilities to retain, acquire and train for gainful employment, including the California Department of Rehabilitation: http://www.rehab.cahwnet.gov/ and the Social Security Administration:  http://www.ssa.gov/pubs/10095.html.

 

Tips for Patients

Coping Strategies for PH Patients - Allyson Rupp, LCSW

A PH diagnosis can strike anyone at any time, and no one can be prepared immediately to handle all aspects of such a difficult condition.  However, there are definitely things that everyone can do to minimize the impact of distress, isolation, and varying emotional responses that come along with this diagnosis.

Recognize that being upset, sad, frightened, angry, disappointed, numb, and other emotions are usually normal, expected responses to rather abnormal and unexpected news.  How you approach these feelings influences your overall experience and adjustment.  

Locate a support group in your community or through your PH center, and participate.  Peer support is a valuable resource that demonstrates that you are not alone.  Others with PH may have had similar experiences, feelings, and triumphs with PH.  They may have strategies you haven’t tried, perspective that is helpful, and friendships you will cherish.  You may have important strengths to share with others, as well, and your reaching out to others can renew confidence in yourself and remind you that you can get through challenging circumstances.

Explore new hobbies.  If your disease has hindered your ability to participate in active tasks you once enjoyed, adopt new ones with a “flavor” of the old.  For instance, if you PLAYED baseball, try to coach a team.  If you enjoyed running, enroll in a charity run/ walk (and do the walking part), and fundraise for a cause, or volunteer at the events.  If you’re missing social aspects and networking associated with work, explore how you can serve on an advisory board, or a planning committee, related to your profession.  Or, discover new interests and passions in your community: book clubs, sewing groups, advocacy groups, community organizations, your children’s or grandchildren’s PTA or school functions, etc… 

Have friends/ contacts un-related to the PH community, as well as some within it.  Some people may find themselves immersed in an environment where PH is all that is spoken about, and taking a break to discuss and do “un-PH” things is just as necessary as learning all you can about and having people who can relate to PH. 

If you are frustrated with systems (disability, travel protocols, etc) that appear to be disadvantaging to people with PH, get involved politically.  There are often initiatives that directly impact the rights, benefits and quality of lives of people with PH, and campaigns around awareness and advocacy with your local representatives is always needed.  Check out the PHA’s website for up-to-date issues in which you could spark a new passion and be instrumental in bettering for yourself and others.

Take vacations.  Whether short and local or lengthy and at a distance from home, taking a break from the stressors of life and from managing a PH diagnosis is always important.  Go to a place where you feel safe, comfortable, and can truly relax, if even for just a day, an escape is necessary.  You will find that your caregivers and family also benefit from the opportunity to take a break from responsibilities and the “norms” of life. 

Be organized. Keeping your healthcare files up to date and easily accessible may minimize the stress that could occur at the time of a crisis, and give you peace of mind that everything is handled in the event of an unforeseen emergency. 

Maintain a routine.  It’s very common to fall victim to boredom and depression when the routines that you are used to are no longer available.  If you have been unable to work due to disability, finding a routine can be a challenge, but research shows that maintaining consistent sleep-wake cycles, and remaining involved in a regimen can uplift spirits, reduce depression and anxiety, and maintain general health.  Try to wake up at and get moving at the same time every day.  If you don’t have plans outside of the house, get up and get dressed, anyway.  Make a list at the start of each week of things that need to be done, and tackle a different one each day.  Have a friend or relative join you for a daily or weekly “date;” something that you can look forward to and enjoy. 

There are so many avenues for coping, and these only detail a few.  You have obviously been doing what you can to become informed and help yourself, so keep it up!  Involve your treatment team in discussion of how you are doing, and seek input and suggestions where you are struggling.  This is a lifelong endeavor, and your interests and abilities will change.  Finding meaning and purpose and ENJOYING yourself is always a sensible direction to err.

 

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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