- Posted November 12, 2012 by
My Diagnosis; A Need for Pulmonary Hypertension Awareness
Life intervened though; a new job and other lifestyle changes accounted for a drop-off in my outdoor activity. After a time I noticed that as I moved at work and started tasks around the house I would get winded easier than I had in the past. I chalked this up to not being as active, and given the area I live in and the stigma of “turning thirty” I figured it was all just part of the game of life. And then life threw me a curveball, I ended up in the ICU after passing out, and neither I nor the doctors knew what was wrong. In January I had my first definite confirmation that something was amiss; with the doctors diagnosing me with congestive heart failure and cardiomyopathy. A visit to my local cardiologist confirmed that I had an enlarged heart, but he wasn’t sure what was wrong with my heart to cause the enlargement. Several scans, tests and procedures later, the best my cardiologist could say was that he wasn’t sure what was wrong with me, but I would most likely need a heart/lung transplant to survive. Luckily he sent me to The Ohio State Medical Center for a second opinion.
Fortunately, the doctors at OSU had an idea of what they were looking at, and after more scans, tests and a second heart procedure I was diagnosed in August of this year with Idiopathic Pulmonary Arterial Hypertension; which, simply stated, is high blood pressure in the right side of the heart and blood vessels between the heart and lungs. This was far removed from the original diagnosis of congestive heart failure, and further away from the shocking need for a heart/lung transplant. About a year from when my first symptoms of breathlessness and syncope became noticeable, I have a concrete, real diagnosis of what is wrong with me. Unfortunately, Pulmonary Hypertension (PH) has no cure, and despite this fact, I consider myself one of the lucky ones.
I am writing this to raise awareness for PH. My story, as condensed as it is, makes me one of the lucky ones to have this disease. I was diagnosed after only ten months of searching, and my body was only in the earliest stages of organ failure. For most patients, it is in the neighborhood of two years before a diagnosis is reached, and many are in multi-organ disfunction by the time they begin medications. I am on medication, and if it works properly for me, I will have more time on this planet than I thought just a few months ago. From diagnosis, the average life expectancy for a PH patient is five years; new drugs are giving us a lease on life, and early diagnosis is helping more people get on medication before their symptoms become unmanageable, but with the late diagnosis of many patients time is limited. We have to become more aware of this condition; more times than not, pulmonary hypertension in its early stages is misdiagnosed as asthma, sleep apnea, COPD or other conditions. Early diagnosis can lead to treatments that can slow or even stop the progression of PH for a time, until there is a cure. In the last year, I have lost almost everything due to this disease. My job, my insurance, my life as I knew it, and I am one of the lucky ones. The public needs to be more aware of this dangerous disease, and that is why the Pulmonary Hypertension Association has decided on November as our awareness month. 30,000 patients and their families have to live with PH in the United States, and more are being diagnosed every year. Knowing the signs and symptoms can be the difference between getting an early diagnosis and finding the disease in its infancy, or not finding PH at all until it is too late. I am one of the lucky ones because I am still here with my family, and I am looking forward to Christmas, the coming holiday season and my 31st birthday, when just 6 months ago, I wondered if I would get to taste another Thanksgiving turkey. I am trying to make November Pulmonary Hypertension Awareness Month, because despite losing so much since January, I still have my life, and for that I am thankful. There is no reason anyone else should go through what I and my family have gone through in the last year. Awareness of Pulmonary Hypertension is the first step towards that goal.