Many of the 350 volunteers leading the Pulmonary Hypertension Association’s (PHA’s) more than 200 support groups are patients and caregivers. But there is also another group of these leaders who by pulmonary hypertension (PH) in a different way: they diagnose and treat it.
Sarah Miranda, M.S.N, R.N., pulmonary vascular coordinator, Korman Respiratory Institute-Thomas Jefferson University Hospitals in Philadelphia, and Tina Stiyer, R.N., B.S.N., pulmonary hypertension coordinator, Froedtert Hospital in Milwaukee, are two such examples.
Both Sarah and Tina say they are happy to be involved in the PH community and lead their organizations’ support groups to help others. Sarah says, “Our support groups are motivating, supportive and encouraging. I like to emphasize that our goal is to improve quality of living, and our topics reflect that.”
“My motivation to start a support group at Jefferson was so that patients could get together and share their experiences, develop a community and hopefully learn at least one new thing about how to manage their condition at every meeting,” says Sarah.
Oftentimes, patients have questions that cannot be addressed during a block of time at office visits. So this support group offers another forum for them to ask their questions.
“Education is empowering, and I believe the more a patient understands about their condition, the better off they are in playing an active role in their health care decisions,” Sarah continues.
Tina enjoys leading a support group because she feels it’s a way that patients can see her as a person, who is really invested in their care outside of the “medical world.”
“I love being a resource for our support group and patients,” says Tina. “I get to know patients on a more personal level; I get to meet and network with other support group leaders and be a patient advocate.” Another bonus for Tina is that she can share knowledge with others, whether it’s medical professionals, other patients, or caregivers and families.
“Our main goal was for patients to see that there were others who had pulmonary hypertension that they could talk with or ask questions,” says Tina.
If you want to start a support group at your facility or in your area, contact gro.noitaicossAHP@troppus for more information and visit https://phassociation.org/localsupportgroups/.