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Patient story

Tina Gillis

Hello, my name is Tina. I am 18 years old. My family found out that I had PPH when I was three years old. I am on Digioxen/Tracleer and I am on oxygen 24/7. I am in the twelfth grade in high school.

PH has been very difficult because I am a teenager and I am scared of what people will say. My family is worried about me because I have fallen sick in the last couple of weeks. I still haven’t gotten my heart and double lung transplant. I’ve been told different stories about how I could get the transplant and then that I couldn’t. I am 18, so it’s frustrating. My doctors just told me that they want me to go on Flolan. I am very scared but I heard it could help me, so I am going to take my family’s and my doctor’s advice.

In the last couple of weeks I’ve been noticing that I am more and more blue, and I have been having trouble breathing. I went to the hospital and they admitted me. I am so small. I hate it. My eleven year-old sister is bigger than me.

Thank you for reading my story.

 

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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.