Pulmonary hypertension expert Paresh Giri believes in patient support groups.
The prevailing view is that the groups’ main function is helping patients cope with their condition. They certainly do that, but their gatherings are also places where valuable information is exchanged, Giri said.
“For example, to hear how one person has coped with and overcome side effects of continuous intravenous medications may be eye-opening to another,” said Giri, who started a PH support group at California’s Loma Linda University Health, where he works. “There are so many snippets of connections that happen when patients share their stories. There is certainly healing through sharing.”
Because of PH’s manifestations, preparing support group meetings requires more than just finding a room.
Loma Linda University Health added far more power outlets than normal to the room in the Drayson Center where the meetings are held. The additional plug-ins are for patients carrying oxygen concentrators. The university, which is in the city of Loma Linda in southeastern California, also made changes to the room to accommodate patients in need of greater mobility resources.
The Loma Linda PH support group meets four times a year. The gatherings bring together patients, caregivers, medical professionals, healthcare providers, and guest speakers.
Giri, who heads the university’s Pulmonary Hypertension Program, started the support group to give patients better insight into their conditions’ challenges, and how to cope with them.
“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 said in a Loma Linda University press release.
Patients connect with others who are going through similar experiences, and share their stories of triumph and hardships.
Giri, who always attends the meetings, said support groups also help patients learn about expert resources.
The most recent meeting, on Aug. 6, featured a discussion led by Sandee Lombardi, a nurse who is the PH coordinator at the University of California at San Diego medical center. She spoke in detail about what it means to manage PH daily. And she discussed resources that can help caregivers.
Previous meetings have featured doctors, nutritionists, and social workers.
The PH coordinator at Loma Linda University Health, Jeanette Merrill-Henry, said “patients are truly enlightened by the educational aspects of coming to the meetings and learning more about the disease.”
Merrill-Henry said two reasons the support groups are valuable are that they remind patients they are not alone and that support is always available.
Some patients leave with a sense of urgency about dealing with their condition, she added.