This interview was conducted in Fall 2012 by Mira Kruger, the granddaughter of a PH patient and a volunteer writer for PHA’s Pathlight newsletter.
Where do you live?
I live in Grass Valley, Calif.
How old are you?
I am 14 years old.
When were you diagnosed?
My mom says I was diagnosed as a baby, and I have been on oxygen since birth.
When did you first start having symptoms of PH?
I was symptomatic at birth. My mom says I was a very sick baby. When I was little, I would turn blue even if my mom took off my oxygen just to change my shirt. I am much better now since I am on the medicines TracleerTM and sildenafil, but I still get short of breath easily and I still wear oxygen all the time. Sometimes I get dizzy, and I run out of energy faster than a lot of my friends.
What activities do you like to do?
I like riding my bike and playing baseball and basketball. I also love to read and I especially like looking at maps.
Have you ever felt unable to do something because of PH?
I do get frustrated when I can't keep up in sports or carry heavy things, and sometimes I get tired of having to wear my oxygen. I can't carry my tank upstairs, and it is hard to walk on uneven ground and carry my oxygen.
How would you describe your life with PH?
I have always had PH, so I don't know any other way of living.
What is a message you’d like to pass on to other kids with PH?
Hang in there. I have a really good life despite my PH, and you can too.