From Misdiagnosis to PAH: Jolie's Six-Year Journey to Answers

For years, Jolie struggled to breathe, visiting doctor after doctor who dismissed her symptoms as anxiety, asthma, GI issues, or stress. Her journey sends a powerful message to anyone facing unexplained respiratory symptoms: don’t settle for dismissals—persistent symptoms deserve answers. Be your own advocate, it could save your life.

Jolie’s symptoms began early in childhood, with difficulty breathing during physical activities. Since Jolie was very active in sports, playing on various sports teams her school had to offer, doctors brushed it off as exercise-induced asthma. As she got older, her symptoms became worse, and she began passing out, experienced heart palpitations, and had extreme fatigue all the time. These symptoms impacted her life as a mother and sonographer. Despite multiple medical consultations, her condition went undiagnosed for six years because Jolie was still active and seemed healthy overall. The turning point finally came when she landed in the emergency room again. This time, the doctors took an extra step. They ran a BNP (B-type natriuretic peptide) blood test, which revealed her BNP levels were critically high at 467, indicating severe heart failure. “I felt like the air was coming in, but the oxygen was not getting to my body. No one could believe that someone who looked young and healthy could have heart failure,” Jolie recalls. 

At that moment, Jolie wasn’t sure if she should be happy that she was now getting some answers or terrified that she had heart failure at such a young age. Her experience underscores the importance of patients advocating for comprehensive testing if they think they have PAH, including a BNP blood test, which can indicate potential heart and lung complications early. After countless tests, ultrasounds, stress tests, and EKGs, Jolie was diagnosed with pulmonary arterial hypertension (PAH), confirmed by a right heart catheterization, which can measure the blood pressure in the lungs.

PAH is a rare and progressive condition, with only 500–1,000 new cases diagnosed each year in the U.S. Roughly 15–20% of cases are inherited. It most often affects women between the ages of 30 and 60. There’s currently no cure for PAH, but with the right treatment, symptoms can be managed and quality of life can improve. Unfortunately, the path to diagnosis is often long—on average, it takes over two years. For Jolie, it took six years of being misdiagnosed before finally getting the care she needed.

Now, Jolie dedicates her time to advocacy—not just for herself, but for something greater. She describes it as “scouting the woods, clearing a path for those who follow in her footsteps.” What carried her through years of misdiagnosis? Hope—and her son.

Her advice? See a pulmonary hypertension specialist. This condition is complex and requires a care team that truly understands its nuances. The right specialist can make all the difference in helping patients navigate their treatment options and improve their quality of life.

Jolie manages her PAH with a combination of therapies and the support of a dedicated care team, including both a cardiologist and a PAH specialist. Her journey is a powerful reminder that you know your body best. If you’re experiencing unexplained shortness of breath or persistent symptoms, don’t dismiss them. Trust your instincts—self-advocacy can be life-saving.

Key Takeaways:

• Talk about BNP testing with your health care professionals if you’re experiencing persistent breathing difficulties, chest pain, heart palpitations, edema, or dizziness/fainting spells.

• Seek a pulmonary hypertension specialist early on for comprehensive care.

• Always advocate for yourself, ask questions, and don’t let others discourage you.

• “PAH is not your typical chronic illness, it is something that can go up and down at any time, you have to take it moment by moment.”

• Remember your mental health is just as important as your physical health if not more—have a sound support system and check in with others.

Resources: 

• Pulmonary Arterial Hypertension (PAH) | American Lung Association

• Pulmonary Arterial Hypertension Symptoms and Diagnosis | American Lung Association

• Treating and Managing Pulmonary Arterial Hypertension | American Lung Association

• Understanding The Results of Your BNP Test

• Finding a Specialist | American Lung Association

• American Lung Association’s Lung HelpLine