Patient story

Valerie NortonValerie Norton

I was told I had secondary PH in February, 2000. I was only 19 years old. The doctors here in Wichita and the Mayo Clinic thought I had blood clots. After having a Heart Cath. in San Diego, I was diagnosed a Stage 3.

I honestly believe that I had the symptoms when I was in middle school because I couldn’t run very far without being short of breath. I thought I was just unfit, but I tried my best in PE. The doctors said it was bronchitis. In high school I was in the Flag Corps and I passed out at a game. The ER said I had asthma. It wasn’t until I was five months pregnant when I started having more symptoms. I could hardly breath. Even sitting left me gasping for air. My chest was tight and I experienced frequent chest pains. I was still in a size 29w-32l pants. I was barely showing. Only by looking really close could you tell I was pregnant. My doctor thought it was the baby. She checked my lungs and said that they were clear and then prescribed Albuterol, for asthma. Of course that did nothing to help. After I had my son on January 7, 2000, I weighed 126 pounds. The doctor put me on oxygen for a couple of minutes after the birth because my lips turned blue. When I was released, I was retaining water and the breathing problems remained. Everyone thought this was because of the pregnancy. After going to the ER three different times, they gave me lasix. Eventually I was sent to a cardiologist who ran many tests and diagnosed me with secondary PH. I was put on blood thinner and improved just slightly and I mean slightly.

I am now on Flolan, coumadin, lanoxin, and aldacton. I am now a stage 1 and am on the transplant list. I am also signed up for the clinical trial with Viagra.

PH has changed my life in many ways. Before I got on Flolan I couldn’t taken care of my son. My mother took care of him for the first 5 months of his life. I couldn’t walk or play. I couldn’t be a mom or even a person for that matter. I was white as a ghost. I looked dead and I was depressed for a while. Now, my priorities have changed. I don’t take anything for granted and I am thankful for what I do have- even my health. Now I can be a mom. I am getting active in my church. I have some color in my face and I can get around a lot more. I volunteer at a local hospital and I want to go into the medical field and possibly specialize in PH. I am becoming happy and enjoying life now. I am becoming a regular person.


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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.