October 2013 is when I first started to notice unusual symptoms that would soon lead a diagnosis of idiopathic pulmonary arterial hypertension. I can’t recall having any symptoms prior to that month, which is rather unusual. Most PH patients show symptoms for two years before receiving a proper diagnosis, because PH is the great disguiser. It can mask itself as anxiety or asthma. Sometimes the symptoms are simply chalked up to being “out of shape.” I soon learned that finding a doctor who knew what was going on would be difficult.
Prior to those first symptoms, my life was pretty active. Up until May 2013, I worked at the busiest bakery in town for nearly a year. I was on my feet all day, six days a week. I carried heavy boxes up a full flight of stairs with ease. In June 2013, I flew to Montreal, Quebec, for training for a new job. Everyday I would spend hours wandering that hot and humid city, walking up giant cobblestone hills and flights of stairs in old department stores. Then I would go back to my hotel and work out.
Between returning from my business trip and noticing symptoms, I also managed to get stuck on a bus during a mini tornado and had to walk several miles to meet my dad, since all the roads were clogged with fallen trees. I was also followed by a man after work to my hair salon, and ran to the salon to get help. Both of those instances are huge stressers. I’ve noticed that since being diagnosed I cannot breathe, and my heart thumps aggressively, with any sort of panic. I was obviously very scared in both situations, but I didn’t notice trouble breathing or a dangerously fast heart rate.
When I think back to my life prior to October 2013, nothing really sticks out in terms of PH. I can’t really remember noticing anything abnormal that made it difficult for me to function. Even up to October, I was walking a few miles everyday, running uphill to catch a bus daily, and doing a 20-minute bootcamp workout most nights. Again, I didn’t notice anything.
My first symptom was an inability to walk up the stairs without becoming extremely short of breath. My parents have two really large staircases in the house, and October makes my asthma flare, so I attributed symptoms to that. However, I soon noticed that I was uncharacteristically short of breath. I tried using asthma inhalers, but they soon made me feel worse. Clearly, this wasn’t asthma.
Symptoms begin to escalate alarmingly
I started to miss my bus after work, because I could no longer run up the giant hill in time. In fact, I could no longer walk up the hill. I started to see black, but never officially “blacked out.” My dad began picking me up from work but, still, I was able to do less and less. I used to always walk with my boyfriend and his dog along a river near his house, but began to stay home, physically no longer able to join in.
My symptoms escalated an alarming rate, and developed in a matter of months. It was scary. I started to go to the ER on a daily basis, and noticed that I had stopped breathing a few times in my sleep, which was a horrible way to wake up. I also started to get out of breath while kissing my boyfriend, which was really weird.
At the ER, I repeatedly explained that my symptoms were more than asthma, but each doctor wrote a prescription for a new inhaler without any sort of thorough examination. If they had hooked me up to an oximeter and asked me to walk, my oxygen saturation probably would have dropped to the 70s. But I looked young, I seemed healthy. Many ER visits took place during work hours, and since I managed an office, I usually looked pretty “put together.” A lot of doctors didn’t even second-guess the severity of my symptoms as a result.
I was finally diagnosed in December 2013, three months after the first noticeable symptom that something was wrong. My first PH doctor said I probably had the disease for two years, because the diagnose was stage 3 to stage 4. This still leaves me puzzled. How did I not notice any symptoms, given how active I was? Why did this disease feel like it came on so incongruously, so quickly?
Sometimes I feel frustrated thinking of all the ER doctors who ignored pleas that my symptoms were more than asthma. From October to December, there was a huge decline in my health. I went from being short of breath going up stairs, to being almost completely bedridden.
It is now three years later. While things aren’t ideal, I am glad to say they’re better than they were. Just the other day, I walked along the river with my boyfriend and his dog, admiring the changing color of the leaves. We didn’t walk as far or fast as before my pulmonary hypertension diagnosis, but it felt good to do something I hadn’t done in exactly three years.
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