I was diagnosed in 2009 with idiopathic pulmonary hypertension at the age of 30. I believe I started experiencing symptoms six months to a year prior: extreme shortness of breath, syncope, chest pain, dizziness, fatigue, and cough. So, I scheduled an appointment with my primary care physician who then referred me to a pulmonologist. The specialist did electrocardiograms and pulmonary function tests, and concluded that I had exercise-induced asthma.
I knew it had to be something else because my mother is a severe asthmatic and commented, “I do not experience what you do on my worst days.” I continued to seek medical attention from hospitals and physicians, but was always told it was asthma, so use inhalers and lose weight - later it was noted the weight gain was from fluid retention. I was also told that I was fine, and what I was experiencing was all in my mind. And, finally, I was told that I must be using illegal drugs because of the symptoms (I never used illegal drugs or smoked.). I thought I was going crazy because I knew I was sick, but the medical community was of no help to me — I was dumbfounded. I continued to pray and hope whatever was wrong would be revealed soon.
Each day I went to work, I had a rough time with my patients because I could not perform my duties due to my limited mobility and declining health. On one particular day I was very symptomatic and briefly fainted, so my best friend who was also working and another nurse took my vital signs, which were normal with the exception of my oxygen saturation and heart rate. I determined I had to go home because I was very weak, so we immediately notified the Charge Nurse, and my friend took me to my car; she offered to take me home, but I insisted I could do it.
I drove to my parents’ house because I knew I could not make it up the stairs to my apartment and I wanted my mom. As soon as I arrived I immediately told my parents what happened, so they called 911. I was taken to the emergency room by ambulance and tests were periodically done, but doctors did not believe I had a serious condition, and the hospital wanted to release me. My mother immediately spoke on my behalf for them to transfer me to the hospital of her choosing and they complied with my mother’s demand. Upon arrival I became unresponsive and tests were urgently performed, including various x-rays, echocardiogram and right heart catherization, which lead to the diagnosis of pulmonary hypertension by two physicians who are also pulmonary hypertension specialists in separate facilities.
My family was told that if the first hospital had released me, my chances of survival were low because I was at stage 4 pulmonary hypertension. Phenomenally, I survived, and once I became responsive, I was told the news that ultimately changed my life forever. “You have pulmonary hypertension.” I was clueless on what this meant for my future.
I am now living a “new normal.” I currently am on combination therapy: treprostinil (continuously through a central venous catheter and a portable infusion pump), ambrisentan, riociguat, and calcium channel blocker. I also use several other medications to help ease the daily side effects of the PH medications. I used supplemental oxygen 24/7 at the beginning; then after doing pulmonary rehabilitation for three months, I was able to switch to during exertion or as needed. After two more separate admissions to the pulmonary rehabilitation program, I am fortunate that my activity tolerance is increasing.
Most importantly, I am determined not to allow PH to stop me from pursing my educational goal. If I give PH the power, then I lose respect for myself. I must be my own advocate and cheerleader.
Also, I lead four support groups because I believe no one should face this journey alone. In addition, I participate in PHA events: I have spoken at PHA’s Congressional Luncheon and two of PHA’s International PH Conferences. I also advocate for those with medical disabilities, speak at community events and at my church.
Additionally, I am a member of the Social Media Advisory Board for PHA, and part of PHA’s Generation Hope, and a mentor for United Therapeutics’ PH peer network program. I am also the co-founder of a very active patient-led PH group on Facebook, PH Family, a growing global forum since 2010 for patients and caregivers to voice questions and concerns about this life threatening disease and to support each other.
Pulmonary hypertension has taught me to live life; I am more appreciative of my quality of life than the quantity. I am blessed to have loving parents because without them and my faith, I would not be able to overcome the daily challenges I face. This is my journey and I must be a testimony, so that others will see that there is life after being diagnosed with a chronic illness.
As a PH community we must stand together and be “empowered by hope.” Every day I want there to be a medical cure for this rare disease, but until there is, I must cherish my moments with my family, friends, and church family because they are a wonderful support system. Pulmonary hypertension has changed my life drastically, but I am determined to ensure it does not negatively impact my life entirely. I know what is important to me; therefore, I will not allow PH to have power over my destiny.
My next goal is to return to the working world and have the most important titles: “Mrs.” and “Mommy.” My journey is not yet complete — to be continued!
My contact: firstname.lastname@example.org