OUR JOURNEYS

Patient story

Pam

"I can't keep up like I use to but, I take care of my grandchildren five days a week and do most everything I did before, with only a few exceptions. I don't know how long I'll feel normal."

Pam

My journey with PH began with a diagnosis of heart failure and pulmonary hypertension just three months ago. It had been six years since I first began experiencing symptoms of lightheadedness and pressure in my head after standing from a sitting position.

After visiting my cardiologist, they picked up a 2nd degree heart block and an electrical problem in my ventricle. I ended up with a pacemaker. Over the years I would experience shortness of breath (SOB), dizziness, and pressure in my head. I attributed all of these symptoms to my pacemaker, and ignored them all.

Three months ago, I began experiencing additional symptoms; dry cough, mild swelling in the right side of my face, flushing, more pronounced SOB, and increased high blood pressure. Yet still, I continued to ignore these symptoms and blamed them on being older and out of shape. My new normal for having a pacemaker just trucked on.

My journey with PH began at a routine pacemaker check-up, where I was minding my own business. They found that my heart rate had reached 200 beats per minute at one point, and I was sent for an echocardiogram.

They detected heart failure, high pressure of 48 in my lungs (normal is 25), and I was diagnosed with pulmonary hypertension. Testing ruled out secondary causes, and they put me on a variety of medicines, a diuretic, and an ace inhibitor.

Since then, my symptoms have improved, and I will have another echocardiogram in two weeks to see if my pressures have lowered as well. This will determine whether or not I'll need to see a pulmonary doctor at this time. If the pressures are down, I will continue with the medications I’m on and continue seeing my cardiologist. I can't keep up like I use to but, I take care of my grandchildren five days a week and do most everything I did before, with only a few exceptions. I don't know how long I'll feel normal.

My first echocardiogram said I had moderate PH, but for now, I'm going to live life as normally as I can and hope this disease can be controlled by my doctor for along time to come.

 

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NORD

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.