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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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.