Patient story

Paige Ruffin

I was diagnosed with PH about a year ago. It took about six months for my doctors to figure out why I couldn't even walk to my kitchen without feeling like I was dying.

So let me start at the beginning. 4 1/2 years ago, I was diagnosed with hepatitis-C and cirrhosis of the liver. Today, as of a year and a month, I have been negative for Hep-C. My MAL level was 9 and a transplant was never going to be needed. But then I got diagnosed with PH which shot my MAL up to about 22 which would now put me on the transplant list. But my PH level is 40 so now, no transplant until they can get the pressure down.

So now I have a Hickman line and a pump for the Remodulin to get the pressure down. In January I go for an echocardiagram and I will set up the appointment for another right-heart cath to see if the medication is working. Fingers crossed.

Thank you for letting me share my story... Paige

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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.