I am a Medical Unicorn: Jessica Kiser
I was only 26 when I was diagnosed with pulmonary arterial hypertension (PAH) associated with hereditary hemorrhagic telangiectasia (HHT). I had known all of my life I had HHT, but never thought anything of it, since the most significant symptom I had was nosebleeds. That was until I returned home after traveling to New Orleans for my job and realized I could not lie flat to sleep. I would gasp for air, my heart would race and skip beats, I could feel my pulse in my stomach and throat, and my legs were swelling. I finally made an appointment to see a doctor, and from that moment, my life became a whirlwind.
I was given diuretics and I saw heart specialists. I was diagnosed with pneumonia, and started coughing up blood. I was finally admitted to Johns Hopkins for the “million dollar workup.” I had so many tests done that I could not even remember them all, including a right heart catheterization. Blood was taken almost six times a day, and they took 20 pounds of fluid off me over the course of just two days. Then the pulmonologist came in to talk to me.
I was diagnosed with advanced heart failure and was weeks away from dying. Then the words “pulmonary arterial hypertension” were uttered. My new doctor explained what it meant and what we could do to treat it. Approximately 20% of patients that have HHT will develop PAH. I had no clue about this, and felt unprepared for life going forward. My doctor explained to me that there was no cure for PAH, but he was hopeful with medications and lifestyle changes I could live almost normally.
And I almost can! A year after starting my new normal, I repeated my tests. My numbers decreased by almost 75%. My walk test came back as if it were a healthy person taking it, and my heart was pumping out more blood then it did a year prior. I baffled my doctors with these numbers, but they have yet to change in the last four years. My doctor refers to me as a medical unicorn for all of these reasons.
Going forward, I learned how to cook without much added sodium—an extreme change from how I lived before and a major contributor to heart failure and hypertension. I now challenge myself to make as much as I can from scratch, or convert much-loved recipes to a low sodium version. I also limit my liquid intake to keep extra fluid off my body.
These changes have made a world of difference in my life. I can breathe easier, walk up stairs, exercise without gasping for air, and live my life as normally as possible with two rare diseases. I also make it a point to spread awareness to both HHT and PAH groups about the connection that can occur between both diseases. If I can help prevent someone from going through what I had to, I will.
I turn 30 this year. This is an event that was not in my cards four years ago. I thank every one of the medical staff and fellow PH patients for getting me here and championing me on the way.
Jessica is a recipient of the Team PHenomenal Hope Unmet Needs Patient Impact Fund. Learn more about how this fund supports PH patients at teamph.org/unmetneeds.