Patient story

Frank Williams

I am a Congenital Heart Patient. I was a computer programmer and fully employed until I had a stroke 10 Years ago. In 1985 my cardiologist told me that I had Pulmonary Hypertension due to a birth defect of a hole in the heart, which is now called Tetralogy of Fallot. I was on Cumadin because my heart defect prevented me from getting enough O2 in my bloodstream and to make up for it my body made a lot of blood which became very thick, like goo. When I stroke out the doctors then said it was Eisenmengers syndrome. One of the therapies suggested is a heart lung transplant, so I told my cardiologist lets look into it. After a while I was sent to UCLA for evaluation. The doctor there said my condition wasn't really getting worse, so I should try Tracleer. I started Tracleer this August, I am now looking into returning to school to start a new career. I still can't drive but hope to again soon so I can get on with my life. I attend 2 different support groups now one for the stroke and the other for PAH. I get so much from each of them. I hope to learn soon what is going on with my own body. I don't want to keep starting over.


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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.