OUTNUMBERING PAH
Katie’s story
Katie is a lot of things. She’s a daughter, a mom to a wonderful young son, and a lawyer. She’s also a world traveler.
Traveling the world is exactly what Katie was doing when she realized there was something wrong.
She and a few friends from college had traveled to Jordan, and they were climbing 900 steps to the top of the Ad Deir Monastery in the ancient city of Petra. Although she was young and active, Katie found herself struggling to breathe.
For Katie, PAH means that she doesn’t always have the energy she’d like to have as a busy mom. But now, Katie’s learning how to balance PAH with motherhood.
Her symptoms persisted when she got home. But Katie also had a demanding job and was adjusting to single motherhood after losing her husband to complications secondary to cancer. Both she and her family assumed her symptoms were a result of her immense grief.
Katie’s breathing and fainting spells worsened, and the people around her grew more concerned and pushed her to get checked out. When she did, doctors realized the right side of her heart was dangerously enlarged.
After more tests, Katie was diagnosed with pulmonary arterial hypertension (PAH).
Learning you have a rare illness can be scary, but Katie wasn’t alone. With help from her friends and family, Katie is outnumbering PAH.
The power of connection
Katie is used to advocating for other people. As a lawyer, she advocates for her clients. And when her late husband had cancer, she was his champion and pushed to make sure he got the best care and asked all of the right questions.
But when faced with her own diagnosis, Katie found it wasn’t as easy for her to advocate for herself.
I’m so good at advocating for somebody else. But then when it came to myself, I kind of failed.
Luckily, her friends and family stepped up to support Katie as she learned to navigate PAH. After her diagnosis, her parents flew into town so they could help her ask questions and support her through her tests and appointments.
Her in-laws also helped by taking care of her son so she could rest and go to her doctor’s appointments. Additionally, Katie’s friends started using their connections to help her get in to see a nearby PAH specialist care team.
Katie’s PAH specialists worked with her to create a management plan. The hard work of her care team and her loved ones’ support got Katie through her initial diagnosis, and they continue to encourage her throughout her PAH journey.
The power of sharing
Katie is grateful for her family and friends and the many ways they help her.
But the reality is no matter how much they care, there are some things only another person with PAH can truly understand.
Katie found the additional support she needed online, connecting with a small group of women who knew what it was like to try and balance their careers, motherhood and life with PAH.
