Tribe of PHighters run through three generations of a family
This is Amanda Brunker’s story:
Our family’s experience with pulmonary arterial hypertension runs deep. I’m writing as a spouse, daughter-in-law, sister-in-law, and mother of a PAH tribe member. The story starts with Donna, diagnosed in the early ’90s when little was known and disease treatments were minimal. I wasn’t blessed to know her, but from what I’ve heard, she was a gem. She laid the groundwork for what would become a family endeavor, entering a trial for the therapy known as Flolan (epoprostenol GM).
In 2013, her daughter and my mother-in-law, Nancy, was diagnosed. Thanks to people like her mom, she agreed to be put on the intravenous vasodilator later called Veletri (epoprostenol AS) and responded remarkably. What should have been two years turned into eight. She handled her disease like the rest of her life — with grace, gratitude, love, encouragement, and joy. She laid the groundwork for us all with her “count it all joy” attitude.
Her son and my husband, Andrew, was diagnosed in 2016, six weeks after our first baby was born. His pressure was extremely high. We went from experiencing life’s best moments to the crippling reality of a short life. One minute, I was picturing my husband walking my girl down the aisle, and the next, him gone and her sick with this brutal disease. But dark days don’t last forever. My husband has his mom’s “count it all joy” attitude. His treatment path has morphed from Veletri to Remodulin (treprostinil), IV to subcutaneous, and several pills that have impacted his health miraculously. We’ve heard things like “lottery lucky” and “in the top 10 patients.” Seven years after being given those exact years as estimated survival, he’s only improved. He’s laying the groundwork for our children.
In 2020, Andrew’s sister Alyssa was diagnosed, and her twin Jessica in 2022. Thankfully, theirs was caught earlier, although dreams for children were forced to change. Their treatment stories are similar with minor tweaks, thanks to a doctor committed to learning and improving. Like each member before them, they’re influencing a next generation of PHighters.
Five kids are in this fourth generation, with and without the gene mutation. Their future looks bright. Science is amazing. All the family PHighters who came before them, and their spouses, laid the groundwork for handling a complex diagnosis. Collectively, the Brunkers have endured countless surgeries, side effects, pain, complications, lost dreams, medical bills, and frustrating conversations with unaware healthcare professionals. But we’ve also witnessed trial meds take off, grown closer, and gained confidence in our strength.
I hope that this November, people feel encouraged by the grit, resilience, and, importantly, the joy of this community.