My PAH Diagnosis: Suzanne Miller
When I was 16 I discovered the “Diet Doctor.” I lived in an affluent community where vanity was more important than good sense. I started a regiment of pills and a strict diet. After a loss of thirty pounds, I was a Westlake Girl. I was blond, blue eyed, tanned, and I fit in. As I grew up, my weight and my moods fluctuated. To my delight I found adderall and it fixed both. Little did I know I could have potentially damaged my future health.
I was an artist and my medium was living walls, made from succulents and colorful sustainable botanicals. The work was long, strenuous, and demanding. I worked day and night, slept little, and only ate when forced by family or friends. In January of 2019 I came down with the flu that developed into pneumonia. I continued to work as much as I could and moved into an artist community where I felt my business could thrive.
The three story condo with a workshop on the first floor and a rooftop garden was very appealing at first, until I found it increasingly difficult to manage the six flights of stairs. I made an appointment with the doctor to discuss my shortness of breath and lack of energy. He treated me for asthma and prepared me for the possibility of stomach cancer. I took little stock in this diagnosis and did not inform my family. I continued with the breathing treatments, but they didn’t seem to help. I couldn’t work, sleep, or eat, and my symptoms worsened.
On July 13th I was to attend a going-away party for a friend, but I couldn’t get out of bed. I must have laid there for over twenty four hours when my mother found me unresponsive and blue. She called 911 and I was rushed to Community Memorial Hospital. Minutes away from succumbing to this illness, a doctor passing through the emergency room stopped in.
Fortunately for me, this doctor was a pulmonologist and recognized the signs of pulmonary hypertension (PH). He had the emergency room doctor order an echo of my heart and it confirmed his suspicions. CMH was not equipped to treat PH so I was transferred the next day to Cottage Hospital in Santa Barbara. There I met my specialist and after numerous tests, I was informed I had an even more rare disease, pulmonary arterial hypertension (PAH). I remained in the ICU for the next nine days where I was treated and educated as to the necessary changes that I needed to make in my life because of this dreaded disease.
I didn’t realize the life as I had known it was over, until I experienced the daily pain, dependence, and restrictions this disease brings. Long and short term planning is impossible. My business has suffered, I have lost my home, and livelihood. Pain, medications, and doctor visits rule my life. After five months I am at the mercy of two life saving drugs and all their side effects as my body gets used to them. I’m told they will subside in time. So I wait and hope this is true. No longer is vanity an issue for me, but waking up every day is.
Suzanne 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.