It’s November, which means it is Pulmonary Hypertension Awareness Month.
For those that do not know, Pulmonary Hypertension (PH) affects the arteries in the lungs and the right side of the heart. It is a progressive disease that is often misdiagnosed and currently has no cure. I have a form of PH called Pulmonary Arterial Hypertension (PAH), due to Hereditary Hemmorhagic Telangiectasia (HHT). This post today is about my PH story, and why is important to spread awareness.
When I was much younger, I was genetically tested for HHT and was found positive for the genetic disorder. While I would monitor my HHT, I had no complications from it for most of my life.
Fast forward to 2017. I was in the best shape of my life. I completed 2 half-marathons, a few 10Ks, walking about 10 miles walks every 3 days and was working out each day either doing spinning or yoga.
In my normal workouts I would feel fine, however walking up a flight of stairs or hills would be hard for me. I would get out of breathe, my hearing and sight would go out, and ultimately I would pass out. I remember one time walking up a hill and my heart rate got up into the 180s. This was not normal for me, nor the hill I was walking up warrant it to get this high. There were numerous occasions where I would pass out and lose consciousness after walking up a flight of stairs, but would write it off as something else - altitude, dehydrated, tired, etc.
After it became harder and harder to walk up stairs without losing my breath or passing out, I decided to see an internal medicine doctor in September 2017. At my visit, she first took my blood pressure and pulse, and noted it was higher than normal. She asked if I was nervous, to which I replied no, and said sure no one wants to admit they are nervous to see a doctor. As a daughter of a physician, and seeing a doctor since I was 14 for Crohn's Disease, my high blood pressure and pulse were not due to this reason. Additionally, when I told her my symptoms, she concluded that it must have been due to my weight or that I was making these symptoms up, so it must be something in my head. She said none of these symptoms, nor my high blood pressure or pulse, would amount to any medical diagnosis and if I wanted to waste my time and money she could order a CT scan.
After leaving her office, not more than a few days later I passed out again after walking up the stairs in my home and made an appointment with a cardiologist. Here, they took me seriously. I wore a heart monitor for a week, where I was told to do my normal workouts and routine to see what was going on. However, the heart monitor did not show anything out of the norm. My heart rate would spike during physical activity, but nothing alarming. My next step was going in for a bubble echo. However, my insurance would not approve this procedure based on the information from the internal medicine doctor. This procedure would be pushed back until January 2018 when the cardiologist helped to finally get approval for the test. The only time the cardiologist team could do the bubble echo was the morning I was supposed to leave for an international trip. I already took off work so I figured it worked out perfectly. While I was last minute packing for my trip, I received the call that would change my life. My cardiologist expedited reading my echo since I had waited so long to get it done, and was leaving for this trip, and saw elevated pressure in my pulmonary artery. I was told I could not get on the plane, let alone go on this trip. At that point I was more concerned with cancelling flights, hotels and other parts of the trip than thinking about what this actually meant.
I am lucky enough that I got right in with my current medical team. We drove to a PH center where after more testing I was officially diagnosed with Pulmonary Arterial Hypertension (PAH), a form of PH caused from HHT. Within a few weeks I was put on Remodulin sub-q and other PH related medications. After going through my medical history, times I felt dizzy or fainted each could likely be pinned on having PH, dating even as far back as 2012. I had the telltale signs of PH, shortness of breathe, dizziness, high blood pressure, high heart rate, which went undiagnosed.
While its not an easy road, I have a great support system in my family, friends and medical team. My pressure has gotten better and my heart is no longer enlarged and is working better. While I've had to modify and give up parts of my "old life", I resumed what I really love to do, travel.
Pulmonary Hypertension Awareness Month is important, since as you can see by my story, not many people are aware of PH, the symptoms to look out for, or its existence in general. It is also important to spread awareness that even with PH you can still do what you love, just with some modification. This November let’s spread #PulmonaryHyptertensionAwareness and #Phight for a cure.
#pulmonaryhypertension #pulmonaryhypertensionawareness #PAH #PH #PHAwareness #MyPHStory #pulmonaryarterialhypertension
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