The heart and lungs are vital to life; I never imagined both of mine wouldn’t be ‘normal’. Have you heard of Atrial Septal Defect and Pulmonary Arterial Hypertension before?
Atrial Septal Defect and Pulmonary Arterial Hypertension
As a 25 year old female, I’ve faced many challenges, but none quite as daunting as those presented by my health conditions—Atrial Septal Defect (ASD) in the heart and Pulmonary Arterial Hypertension (PAH) in the lungs. This blog is a candid exploration of my experiences, the lessons I’ve learned, and useful facts about these conditions, and how I manage them in daily life.
My ASD and PAH Diagnosis:
My journey began when I started experiencing unexplained shortness of breath and fatigue, which worsened over time. It felt like I could never catch my breath. I would walk for less than 3 minutes and I would be breathless, on flat ground. These symptoms persisted for about a year before I finally received a diagnosis. After a series of tests and consultations, I was told I had a “very large ASD,” a congenital heart defect with a hole in the heart, and PAH, a rare and progressive lung condition characterized by high pressure in the arteries. My PAH is secondary, likely caused by the ASD.
The Initial Challenges:
At first, I didn’t really understand what I had. I had never heard of ASD. Then, I received an email about my diagnosis, stating I had “severe pulmonary hypertension with a very large ASD.”
I didn’t know what PAH was, so I Googled it. Searching online for information about PAH was disheartening, as the first related searches were about “PAH life expectancy.”
The first few months after my diagnosis were a whirlwind of emotions. I was scared, uncertain, and in denial. At 25, how could I manage these conditions and still live a fulfilling life? I had just started a new job when I received the news and didn’t know if I would need to resign, when or if I could have a heart surgery, or if it was even possible. I wasn’t sure if I should resign my 9-5 and travel the world, if I could get married, or have children.
Having a hole in my heart was already overwhelming; PAH was another shock I couldn’t handle. Learning that PAH has no cure and requires lifelong medication was devastating. The mental challenges were even harder to face than the physical ones.
Embracing a New Normal:
As I delved deeper into understanding my conditions, I realized that adapting to a “new normal” was crucial. I learned to listen to my body, pace myself, and make lifestyle adjustments to accommodate my needs. Seeking support from a compassionate medical team and connecting with others who shared similar experiences became invaluable. Acceptance took time, but once I reached it, I could focus on living my life and planning around my health conditions. While ASD and PAH are part of my story, I didn’t let them control my life.
Inspiring Others: As I continue to share my journey through this blog, I hope to help others facing their own health battles. Whether you or a loved one is navigating ASD, PAH, or any other chronic condition, you are not alone. Let’s live life as it is, to the fullest.
