OUR JOURNEYS

Journeys Memorials

Amy Caroline Stamp

As told by her daughter, Leah Stamp

"My mother always kept a positive attitude no matter what. She never let anyone feel sorry for her. She kept her pride and took joy in the small victories, like gaining a dozen steps in the most recent walk test. She would talk about how her and “flo" (as she nicknamed her pump) were off for another adventure."

My mother was diagnosed with primary pulmonary hypertension when I was 13 years old. She progressed to the point where the left side of her heart was swollen four times the size it should have been. It had taken months for the doctors to figure out what was going on, and when she was finally referred to a specialist, she was diagnosed immediately and within one week was placed on Flolan. I remember hearing the doctors talk about how they only projected another two years for her and not really comprehending what was happening.

When she finally came home from the hospital, she brought with her thousands of dollars of medication and equipment. I was taught how to mix her medicine in case she was unable to do it, and I remember the nurse being very specific on the fact that if there were any mistakes in ratios, or too many air bubbles left in the cassette, it could kill her in a matter of hours. Not to even mention the risks of infection—given that the port went straight into her heart! That's a burden that no child wants to bear.

I remember being terrified the first dozen or so times, and going through about three cassettes every time I mixed the medicine, because I was so paranoid that I had made a mistake. My mother always kept a positive attitude no matter what. She never let anyone feel sorry for her. She kept her pride and took joy in the small victories, like gaining a dozen steps in the most recent walk test. She would talk about how her and “flo" (as she nicknamed her pump) were off for another adventure. My mother would always try and educate people about her condition, as many were very confused as to what it entailed. She became actively aware and even convinced our local congressman to support the PH Awareness bill. Her efforts led to the discovery and diagnosis of both her sister and her niece with PH, thus saving their lives.

She lived with her condition for nearly seven years, far surpassing all of the medical community's expectations. Her positive energy and refusal to lie down and let PH run her life have inspired me in several different ways. Since then, a very close friend and I have established a charity group known as “Running PHor Amy”. It was founded in 2010 and has so far raised nearly $1,500 for the Pulmonary Hypertension Association in honor and loving memory of Amy Caroline Stamp.

 

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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.