Pulmonary Arterial Hypertension changed my life
Congressional District: FL08
Heart Disease, Lung Disease, Rare Disease
Issues and Challenges
Gerry has encountered: Copay Issues, Insurance Issues, Rare / Underserved Disease, Financial Assistance, Gaslighting, Invisible Illness, Medical Devices, Prior Authorization, Step-Therapy / Fail First, Underserved Community
In January 2018, we relocated to Colorado Springs, Colorado for my husband’s job. My earliest memory of difficulty breathing was when we arrived in Colorado. One morning I woke up and was so tired, I could barely stay awake. I had no appetite and I could barely catch my breath. I told my husband that I was scared — something was wrong. The next morning, I woke up and couldn’t breathe. I could barely stand because my legs were so swollen. I went to the emergency room.
The admitting nurses asked me what my symptoms were, and I hashed this whole story to them. The nurse taking my name asked me if I had heart failure in my family and I told her no. She asked me if I had ever been seen for a heart problem. Also no. She said it sounded like heart failure to her and she ordered an EKG while I was filling out paperwork. They diagnosed me that night with idiopathic pulmonary arterial hypertension (IPAH).
I went to Denver a week later, and my doctor asked that I be admitted to the hospital so that they could run their own tests and get a better idea of what was happening. I was admitted a week later, with the expectancy that I would be there a couple days and go home on oral medicine. The night I was admitted they did a thorough echo on my heart and realized that the severity of my PAH was not just moderate. They found that I was severely sick and that I needed immediate treatment or I would die.
The shock of this diagnosis was unreal to me. I cried, I called my husband, I called my parents who were half way across the country, I called my closest friends and I cried. I let the fear overwhelm me as I let it sink in that life was about to look really different. The doctors did a right heart catheterization and put in a central line that administers continuous infusions of Remodulin via an IV pump, 24/7/365.
PH has changed my life, I hope that my story will be one that helps raise awareness for the seriousness and severity of PH.
My Motivation and Inspiration
My people start coming out of the woodwork, other Phighters who had the same experiences as me in groups, same positive outlook and same desire for hope. The sweet, sweet phighters that I have met in the last two years have made this journey worthwhile. They have given me so much hope and so much inspiration, and I hope that I have made as much of an impact on them as they have on me.