The Search for Truth -- A Diagnostic Tale (Part Two)

Just before the P(H)arty . . .

My health was continuing to deteriorate -- fatigue, dizziness, and shortness of breath were quickly becoming unsolicited staples of daily life. It was all too easy to dismiss these "symptoms" or, rather, to attribute them to other, already suspected causes (e.g. fatigue was the effect of my poor sleeping patterns or worsening anemia, dizziness the effect of dehydration, shortness of breath of poor physical conditioning, etc.). Rationalization can only take one so far and, in part due to suspected pneumonia, I eventually scheduled an appointment to see my general practitioner.

Following some blood-work, an x-ray and a very brief "chat" with, who I believe was a physician's assistant, I was instructed to get some rest, to attempt to reduce general stress, and to adopt a daily exercise routine. In short, I was informed that my symptoms were psychological, not physiological. Surprisingly to me, at the time, I left the appointment frustrated and angry. I was confident that something was awry and desperate for answers -- even if those answers were unpleasant.

"I was informed that my symptoms were psychological, not physiological."

Two long days after being dismissed as a nut-case, I received a call from the doctor's office. I was advised that my x-ray had been sent in for further consultation and that the consulting radiologist found some abnormalities -- specifically, pulmonary aneurysms. I was immediately scheduled for a CT scan, angiography, and a chest MRI. Following these tests, I was referred to both a pulmonologist and a cardiologist. The first pulmonologist that I met with told me that everything was fine and that I should consider having a follow-up visit in the next few years. By this time I was beginning to become disillusioned by the vast amount of misinformation assaulting me -- I was starting to learn how to advocate for myself.

I sought out, and scheduled an appointment with, one of the best pulmonologists in my area. Dr. Rennard was kind, attentive and knowledgeable. After several visits and many tests, he told me that I did not have aortic aneurysms but, rather, many arteriovenous malformations (AVMs). Dr. Rennard diagnosed me with Hereditaty Hemorragic Telangiectasia and referred me to an interventional radiologist who would later preform embolizations on 13 of my largest AVMs.

This blog is about my journey with Pulmonary Arterial Hypertension, so why am I spending so much time talking about AVMs and HHT? I strongly believe that understanding the setting is integral when attempting to apprehend the greater story . . . this is the setting from which my journey with PH sprung.

The Search for Truth -- A Diagnostic Tale (Part One)

Prior to the P(H)arty . . . 

As a young child I was "diagnosed" with exercise-induced asthma -- this was something that greatly limited my involvement in any activity that required physical exertion. Despite my limitations, I had a deep desire to be "normal", to be able to run with my brother, to play basketball with my friends; however, no matter how hard I tried, I was continually left frustrated and gasping for breath. As I grew older I joined a gym and began an intense conditioning program. My determination paid off, a little. I still couldn't jog for more than a minute at a time, but I could ride the stationary bicycle for two hours. I couldn't foster the strength to stay on the stairmaster for more than a minute or two, but I could work my magic on the elliptical for nearly a half of an hour. I was dedicated, so dedicated . . . but the frustration and breathlessness remained and eventually worsened. 

"The medication that I was prescribed did little to ease my condition"

As time passed my symptoms grew worse. The medication that I was prescribed did little, if not nothing, to ease my condition. Leisurely strolls quickly became a grueling task with the introduction of even a slight incline, climbing a single flight of stairs became a daunting task. By this point, exertion not only left me breathless but disorientated and dizzy -- I even passed out after a very short run while at work. Although it took me a while to come to terms with it, I began to realize that I must be dealing with more than a simple case of asthma. My search for truth was about to begin . . .little did I know, I was about to embark upon a journey rarely traveled. I would soon have the chance to experience the beautiful, the terrifying, and the strange world of Pulmonary Hypertension -- this blog will chronicle my journey.