Patient story

Maureen Hawkinson

It took five years for me to be diagnosed with pulmonary hypertension. The average time it takes for a diagnosis is 2.8 years. Pulmonary hypertension (PH) can be the result of another medical issue, genetics, or side effect of certain medications, but in my case, the cause was unknown. This is referred to as idiopathic pulmonary arterial hypertension (IPAH).

Looking back, I did all the things a good patient should do: I saw my primary care physician (PCP) regularly, pursued multiple referrals, and followed through with recommendations. Still, I wound up in the emergency room (once) and urgent care (twice). Not one of the health care providers I saw recognized the symptoms of PH. What’s really scary is that the symptoms began manifesting long before I was in stage four of this disease. To make matters worse many of the health care professionals, other than my PCP, left me feeling crazy and humiliated. The shame I experienced after being dismissed by different physicians (one even accused me of being a drug addict!) made me skeptical about getting the necessary help. This is one reason PH awareness is critical. No patient should ever be treated with such disregard.

When I was finally diagnosed, I was both relieved and terrified. My life was turned upside down. As hard as those early days were, it will be two years in February 2014 since my first cardiac catheterization; I am now stable on a regiment of Remodulin, Revatio, and Letairis. Exercise and the support of my family have also helped improve my quality of life immensely.

I still have rough days and need extra time to complete daily tasks. I wear an external pump for the Remodulin, which causes discomfort at the injection site becomes even worse whenever I have start a new site. My belly swells up like a hot, red beach ball. Additionally, it feels like a knife is being twisted into my stomach leaving me incapacitated for nearly two weeks.

Along the way any friends I had seem to have disappeared. My family is so incredibly supportive however, my spouse had to take a job out town to pay for our incredibly high insurance premiums. I do have the most amazing daughter, who put her life on hold to help me get back on my feet (I am proud to say she is starting to get her life back on track).

Here is why awareness and early intervention is essential. Had I been diagnosed earlier I would have had greater treatment options which generally means less invasive and less expensive treatments (pills or inhalation Rx's instead of needles). Plus I could be productive member of the work force instead of being forced to go on disability.

So, what now? I’m writing this on New Year’s Day and despite the usual resolutions to lose weight, etc. My biggest challenge is learning how to live life all over again and I can assure you that standing still is not an option.

submitted 2014

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The National Organization for Rare Disorders (NORD) awarded PHA the Abbey S. Meyers Leadership Award in 2012 for outstanding service to PHA members in advocacy, education and other key areas.