PH Community Workshop attendees participate in interactive survey.
Odin Apostoloff frequently asks his parents when his pulmonary hypertension will be cured.
“It’s hard to explain to him there is no cure because I always want him to remain hopeful,” mom Jessica said. “He wants to do things that other kids are doing like play baseball or run around, and he sometimes just doesn’t understand his limitations.”
The Apostoloff family was among the 70 people who attended the PHA Connects: PH Community Workshop July 29 in Boston. The workshop featured six breakout sessions, including two on pediatric PH, as well as a Q&A by health care professionals from medical experts; a general session about new PH research, and an interactive session where attendees answered questions for a live survey.
In the survey session, Eileen Harder, MD, asked questions like, “When were you diagnosed with PH?” and “Did you receive a right heart catheterization?” Participants entered answers on iPads, and the survey results would appear as graphs on the presentation screen.
Learning take-home skills
After the workshop, Jessica Apostoloff said she felt more at ease. She worries about Odin pushing his limits in school and managing his mental health.
She was glad to learn more about gradual process to transition from pediatric to adult PH care in “Life with Childhood Onset PH.” Jessica said the session’s key takeaway was ensuring that Odin develops self-advocacy skills.
Panelists Timothy Klouda, DO, and Molly Gilmore, MSN, RN, CPNP, from Boston Children’s Hospital said patients know their bodies best, so when something feels off or clarification about treatments or diagnostics is needed, it’s important to advocate.
Panelists also recommended that pediatric patients practice different independent skills to help as they transition away from relying on their parents. For example, a teen could practice calling endocrinology to get blood test results or practice organizing medications.
“You can’t ever prepare for the complexity of care, so start earlier rather than later,” Dr. Klouda said.
Jessica was relieved to learn that Odin’s care team will be available for pre-teen, adolescence and late teen transitions. “I was worried about how he was going to learn to take care of himself,” Jessica said.
Looking ahead
Himani Greg also enjoyed the session on childhood onset PH. Her 9-year-old daughter Saavi was diagnosed with PH in 2017.
“I want to know what the future holds for my daughter,” Himani says. “She undergoes multiple therapies, and I want to see if that’s going to be the case for the rest of her life.”
In the session, Himani learned about determining her daughter’s disease risk and checking benchmarks for breathing, physical activity and completing daily tasks. As Saavi ages, checking those benchmarks will be essential to determining future treatment plans, Himani says.
The same session also addressed school outreach protocols, such as meeting weekly with a school counselor for mental health support and including the school nurse. The goal is to create as normal a learning environment as possible for children with PH.
“This session provided an idea of what my daughter is missing,” Himani said. “It set the parameters so we’re now aware of what the best practices are and how they should be achieved.”
Tips to maximize quality of life
“I like taking notes to take back to my wife’s doctors because they’re always curious about what we learn at the sessions,” Johnie said. “It takes a combination of community, family, clinics and doctors to tackle PH, and you have to make sure everyone understands what’s happening to get the best outcome.”
Pamela was diagnosed in 2003 when fewer PH treatments were available. Since then, she has attended multiple PHA workshops to learn more about advancements in PH understanding and treatment.
“I crave having information. It’s never too much,” Pamela said. “I think knowledge is power, and being surrounded by my people and peers who understand what each other is going through is wonderful.”
Pamela Myers
