OUR JOURNEYS

Patient story

Joanne

Like most PPH patients, I'd never heard of the disease but once diagnosed, I learned everyting I could. And, as most patients know, the information is overwhelming.

As I worked through the diagnosis, I wasn't depressed, I was mostly angry at the random unfairness. Once I started flolan, I threw out all of my dresses, believing I would never wear them again. I also had myself convinced that I would somehow win the fight and I did, for 3 years. I continued to work full-time and traveled to Europe, with my little flolan pouch always attached.

Eventually (and in retrospect, quite rapidly), the flolan stopped working and then even the simplest of movement was both draining and horrifying. I was forced to admit that my fighting wasn't enough and that I was no longer in control-a tough realization. I hated the pitying looks I got. Friends and family tiptoed around me-everyone concerned but no one quite knowing what to say. My appetite was gone and I was down to 85 pounds but filled with fluid-a truly scary sight. I was living on juice bars since digesting food on such a high dose of flolan was not worth the side effects.

The day before I received my transplant, I finally admitted to myself that my life was over-it was at the same time a sad and peaceful moment. Giving up was something I had never done before but I knew I was beaten. The next day, a nurse prepping me for my surgery commented that I didn't look nervous and truthfully, I wasn't. I couldn't imagine feeling any worse and I knew the surgery was my last hope. When I woke up after the surgery the next day and opened my eyes, I first felt for my flolan pouch and it was gone and best of all, I could actually breathe again.

And so, here I am 4+ years later-not the same person but a better person-calmer, grateful and stronger than ever all because of my generous donor and his family. There is life after PPH-when I was at my worst, I couldn't imagine going on and now I can't imagine slowing down.

 

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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.