Pandemic Insolation Inspires New Support Group

Iconnect with many patients on a personal level as I care for them during their journeys with pulmonary hypertension. One of them, Tiffani Brown, inspired me to become more involved.

Throughout the pandemic, I saw how isolating it was for her to be home, unable to work. Because of her parenteral therapy, she was at high risk of serious COVID-19 complications. It was heartbreaking to watch such a young, lively, bubbly person stay in bed all day. I tried finding ways to get her out of the house (mostly by walking my dogs), and I can’t believe the difference in her morale and mental health. While walking the dogs and talking to her, I realized how much our area needed a PH support group.

Patients need a mental health outlet, and our support group has given many people the push they needed to be more social. Tiffani helped set up our group and inspires me to help other patients like her. She has given back to me as much as I have given to her.

Another motivation to start a PHA support group was the misinformation about PH on social media. I want our patients to know what we advocate for and what we don’t. I want patients to understand the medications, what a halflife is, how you can still live an active life with PH, and how to keep yourself out of the hospital. After one meeting, I was totally hooked.

The response to the OSU support group has been overwhelming. Our group takes a very positive approach to PH, and patients say it helps them recognize they can live a full, active life. Health care providers are present at every meeting, which helps our patients know we are committed to helping them achieve their best life.

For me, the most rewarding part of being a PHA support group leader is seeing what a vital service we are providing to patients with a rare disease. Patients, family members and friends are so enthusiastic about our group because they feel a need to meet and socialize with others who share their concerns. and issues. The support group provides a safe space for that.

Debbie Kittel of Gahanna, Ohio, leads a Pulmonary Hypertension Association support group at The Ohio State University, where she is the pulmonary arterial hypertension nursing program manager.