LaKeshia Orr was just shy of her 31st birthday when she learned she had pulmonary hypertension. She’d never heard of PH, and information she initially found online was terrifying and discouraging. After her pulmonologist introduced her to a Pulmonary Hypertension Association support group, her outlook changed. Today, Orr, 38, is the face of our fall fundraising campaign. The southern California native initially shared her story in 2019 with Pathlight, PHA’s quarterly member magazine.
When I first learned I had pulmonary hypertension, I, like many, had no idea what it was or what it meant for my life. Discovering you have a rare chronic illness can be isolating if you don’t find your tribe. I was lucky to get connected with PHA through my pulmonologist Paresh Giri, MD, the driving force behind the Loma Linda support group with my PH coordinator and now co-leader Jeannette Merrill-Henry, RCP.
Through the group, I found a community that truly understood my struggles. The tips and support I received have been instrumental in my battle against PH.
PHA support groups are a lifeline, providing space for people to share their stories, celebrate victories and find comfort on tough days. I recommend finding a support group to meet people who can relate to you and/or inspire your journey. We PHers can speak to what it’s like living with PH. We know the tips to make life a tad bit easier on the difficult days and exactly how huge the small wins are.
Californian dreaming
Finding my community and a care team that truly cares is key to my success. My team has encouraged, supported and celebrated my goals. Success goes beyond goal setting: it’s about making promises to yourself. I promised myself that if I ever became pump-free, I would show my gratitude by learning how to swim. It became my why.
When I could barely stand up in the shower and stayed in bed all day, I would dream about being in a pool without a battery-operated machine attached to my body.
I am happy to report that I have made progress. After I had my pump removed, I swam in the second largest barrier reef last year and went snorkeling for the first time. It was a culmination of everything I daydreamed about in hospital beds. I’m eternally grateful for every experience and every day that I get to try again.
Later, I became a co-leader of the group so I could share my positivity with people who need it. I’ve seen firsthand the power of shared experiences. New support group members often came with fears and questions, and I found it incredibly rewarding to offer them hope and practical advice.
Many of us are blindsided by our PH diagnoses, but PHA increases our understanding by providing education, support and advocacy. PHA’s work ensures that no one must face this condition alone. I have such an affinity for PHA and the people from the PH community who openly share what it’s like to live with PH.
