Mutual Support Thrives at Pulmonary Hypertension Group Meetings

The Inland Empire’s only support group for pulmonary hypertension is embarking on its second year of helping patients of all ages cope and manage this unique, but life-changing condition.

On Sunday, August 6, the Pulmonary Hypertension Support Group will hold its third meeting of the year at the Collin’s Auditorium in the Drayson Center at 25040 Stewart Street, Loma Linda, CA 92354. The meeting begins at noon, and pulmonary hypertension patients, caregivers, medical professionals and healthcare providers are welcome to attend.

Paresh C. Giri, MD, FCCP, medical director for Loma Linda University Health’s Pulmonary Hypertension Program, created the group to help patients gain a better understanding and a clear sense of what their condition entails.

Pulmonary Hypertension is high blood pressure of the lungs and is often referred to as the “other type of high blood pressure.” Patients experience shortness of breath, fatigue, chest pain or dizziness. Many of these symptoms can be associated with other cardiac and pulmonary conditions, such as heart failure and asthma. This is why it can sometimes delay proper diagnosis of pulmonary hypertension.

“We want to make sure individuals understand the complexities of the disease and learn about it from each other which is probably one of the main reasons for patients and their families to attend,” Giri says. 

The support group is an informative opportunity for patients to explore their condition through expert discussions, tips and resources and of course, the strength of mutual support. Patients are invited to connect with others experiencing similar real-life hurdles of oxygen tanks, pumps and medications and treatments that have worked or failed. Many patients are open to sharing their personal stories of triumph and hardships during the meetings. 

“To hear from other people and what they’re doing to cope can often be a surprise,” Giri says. “For example, to hear how one person has coped with and overcome side effects of continuous intravenous medications may be eye-opening to another. There are so many snippets of connections that happen when patients share their stories; there is certainly healing through sharing.”

Sunday’s meeting will feature a discussion led by Sandee Lombardi, RN, pulmonary hypertension coordinator for University of California, San Diego. The presentation will take a closer look at how to manage PH on a daily basis and provide additional resources to caregivers learning how to care for their patients in the best way possible. 

Previous topics have explored how PH is diagnosed in the catheter lab, echocardiograms, salt and fluid restrictions and traveling safely with PH.

“Patients are truly enlightened by the educational aspects of coming to the meetings and learning more about the disease process,” says Jeanette Merrill-Henry, RCP, RRT-NPS, pulmonary hypertension coordinator at Loma Linda University Health. “It awakens them to a sense of urgency, hopefully about their condition, and to take it seriously.”

Previous meetings have included presentations from nutritionists, social workers and physicians. Attendees are encouraged to recommend future topics of discussion.

Meetings are held four times a year at Loma Linda University Health’s Drayson Center. The meeting room offers sufficient space and accessibility for patients in need of greater mobility or access to power outlets for oxygen concentrator use.

Giri is available at every meeting to answer questions. Lunch will be provided. A local band usually performs after the meetings, giving patients time for dancing and fun.

The following pulmonary hypertension support group meeting is scheduled for Nov. 5, 2017 at 12 p.m.

Merrill-Henry says it’s important for patients living with PH to remember support is always available.

“You’re not alone, and living with pulmonary hypertension is something that should not and cannot be done alone,” Merrill-Henry says.

For more information or to make an appointment, call 909-558-2896.