OUR JOURNEYS

Patient story

Tami Burke-Heckler

"When they say share your journey, they truly mean a journey. PH is a marathon disease, not a sprint."

Tami Burke-Heckler

When they say share your journey, they truly mean a journey. PH is a marathon disease, not a sprint.

I am a 52 year old wife, mother, daughter, sister, grandma, and a full-time ICU nurse. In the spring of 2010 I noticed I was becoming very short of breath walking from the parking lot of the hospital where I worked. I would have to stop at the entrance to catch my breath before walking the long hallway to the elevators. I, like many women, thought this was because I was out of shape and needed to exercise more. My co-workers would tell me my lips looked blue, but I felt okay and told them it was just a capillary running across my lip.

Six months later I developed shortness of breath and experienced chest discomfort on my drive to work. I ended up in the emergency room, and four days later, I had an echocardiogram, volumes of lab tubes, and a heart catheterization under my belt. They sent me home with a diagnosis of idiopathic primary pulmonary hypertension.

My home and portable oxygen equipment was delivered, and my life was forever changed. One year later, I am on Letairis and inhaled Tyvaso. I notice some changes for the better, while other things have stayed the same—and with PH, this is a good thing.

"PH has most certainly changed my life but it hasn't taken my life."

- Tami Burke-Heckler

I can no longer care for patients at the beside as I had done for 30 years. I can't just walk out the door, I must plan what medications I will need, and charge my oxygen fully so I have six hours away from electric. I have the best family, who understands that we may have to alter where we go or what we do on vacation, and are willing to make things easier for me without complaint. I have a husband who watches over me and takes care of those things that I cannot. PH has most certainly changed my life but it hasn't taken my life.

Each day I do what I can, rest when I need to, keep my friends and family close to my heart, and pray that through research, performed daily and tirelessly by many who are smarter than I, they will find better treatments and a cure. November is PH Awareness Month. If one person recognizes the symptoms in themself or a friend, another life will be lengthened and one more PHriend will be made.

 

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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.