Gerry was diagnosed with pulmonary arterial hypertension in September 2018, at just 28 years old. But getting to that diagnosis was a journey. After giving birth and moving from North Carolina to Colorado for her husband’s military relocation, she began to experience various symptoms. But as a young mother living at a new altitude level, her doctors believed they could all be explained by postpartum or altitude sickness. However, many months later she still was experiencing symptoms, which seemed to be worsening instead of improving. “It was just easy to make excuses for how I was feeling. It probably took about seven months before I realized something was more wrong than just postpartum issues,” Gerry said.
After a trip back to North Carolina, Gerry ended up in the ER when the swelling in her legs became so bad she could barely stand. She saw several doctors and a cardiologist once she was admitted, but they struggled with a diagnosis. It wasn’t until months later, after heart failure landed her in the hospital again, that she was tested for pulmonary hypertension. “Many patients go undiagnosed because their hospital has little experience with PH,” Gerry explained. “I had almost every test run on me, CTs, X-rays, echos, and some were done twice to make sure they were accurate.”
The doctors performed a right heart catheterization which led to the first pulmonary hypertension and congestive heart failure diagnosis. A second heart catheterization run by a specialist, along with a myriad of other tests is what finally led to her current diagnosis of severe idiopathic pulmonary arterial hypertension (PAH) and severe congestive heart failure. “The diagnosis process was long and as you can imagine heartbreaking. When I did online research about pulmonary arterial hypertension, what I found was out of date and incredibly bleak.”
Because pulmonary arterial hypertension is a rare disease, a specialist is needed to create a treatment plan. Unfortunately, finding the right management plan for Gerry took some trial and error. She is currently being treated with a pump medication that she wears 24/7 as well as a cocktail of drugs. Gerry has also been enrolled in a clinical trial.
As a young mother and wife, Gerry found herself facing her own mortality far sooner than she expected. She was devastated, but she turned to her faith for comfort. “I think that my faith and having a great community that showed up in the face of something so life-changing was huge for me and my family. We had people all over the country rallying around us and it helped soften the blow,” she said.
Creating a Community on Social Media
It was Gerry’s need for connection and support that first led her to share her story on social media. With her family and friends living across the country, she found social media to be the best way to share information with them. Because her Instagram was public, she began to gain new followers, many of whom were also living with PAH. When she was in the hospital, she met a woman who had a similar story. She too was a young wife and mother who had the same devastating diagnosis. She visited Gerry in the hospital and answered all her questions.
“It's funny because she probably doesn't even realize how big of an impact she made on me, because when you're going through a diagnosis like this, the hardest part mentally I think is seeing yourself outside of those four hospital walls,” Gerry explained. “It was a pivotal moment for me. So that's why I started sharing on social media, because I wanted to be that girl for someone else.”
As a social media influencer, Gerry has found renewed purpose. She has begun sharing her story, building a following and connecting with important organizations. She has begun working on a collab with the American Lung Association. She has also traveled across the country speaking at events and meeting other patients with similar diagnoses.
“Having PAH has taught me that the cycle of grief is a cycle that you go through all the time and not just once. Being diagnosed with a chronic, rare, and progressive lung disease is very sobering and can emotionally take a toll on both you and your family,” Gerry shared. “I would tell anyone dealing with a chronic diagnosis to show themselves grace. Show your body some grace as it tries to fight and heal. Don’t be too hard on yourself because things look different than you imagined.”
Blog last updated: September 17, 2024
