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Patient story

Honey Kennedy

This is my first Conference. I was diagnosed with PPH almost two years ago. I have been on Remodulin for almost two months.

Two months after being diagnosed my father was killed in a car crash. He had been on his way to come and take care of me for a couple of weeks. Because of this I cannot remember how I felt about finding out that I had PPH. I do not know if I felt like a victim or a survivor. I do remember often thinking, "are you kidding me? This and I lose my father?” I know I hated having a conversation with my husband about how our future together may be changing.

Now my focus is keeping myself in this moment, while being aware that there are things that I do have to stay prepared for, such as keeping medicine handy when I go out and making sure there is plenty of freezer food for my husband during the week of a site change. I call the site change week my vacation week. I try to make the area around the couch into a little haven complete with fluffy pillows and a foot massager.

Other than a bit about my story, there really are just three things that I want to share.

If you are starting on the subcutaneous Remodulin, the first twenty days are horrible. But you can handle it. You will persevere. It does get better.

Pulmonary hypertension can be scary and overwhelming, but you are still you. You can still do what you want, you just have to adapt. I love to go into the hot tub, and I still do, I just go in wrapped up in plastic and waterproof tape. So again, you are still you, just be this every now and then.

Whenever you get tired and you need a pick-me-up, sing "Just Keep Breathing" to the tune of "Just Keep Swimming" from Finding Nemo.

 

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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.