OUR JOURNEYS

Patient story

Kristie CoulterKristie Coulter

My PPH came out with pregnancy in May 1999. I wasn't diagnosed until July of 2001. By then, I was blue from head to toe and could hardly walk. I had many other symptoms as well that come along with severe PPH. They had attributed my symptoms to the pregnancy...then to severe asthma.

My first PH specialist's appointment was to see Dr. Poon at Mt. Sinai hospital in NYC on Sept. 12, 2001 (you know what happened on Sept. 11th). My husband and I were the first ones over the George Washington Bridge when they reopened it the morning of Sept. 12th. We could see the plume from the twin towers in the distance. I was hospitalized for the next three days for testing and was put on Flolan the following month. Flolan worked very well for me. Within a couple of days, I was walking laps around the cardiac ward (I could hardly make it to the bathroom when I went in). Flolan gave me my life back.

When I was originally diagnosed, the doctors hung their heads and told me I was dying. I didn't believe this at all. I had a baby at home and I wasn't going anywhere. I'm very lucky to have found my specialist and that Flolan has worked so well for me. I'm now told to expect a normal life span.

I now stay home with my daughter, who is 3 1/2 yrs old. Since my insurance company has made it clear that they want me on Medicare asap...I don't expect to go back to work any time soon. I qualify for Medicare in October 2003. I prefer to stay home with my daughter anyhow. It's amazing how busy a toddler can keep a person :) She has dance class, gymnastics class, play dates.... I guess I just did things backwards...I worked first and am doing the 'mother thing' second :) I am very grateful to my family for all their support and for the wonderful people I've met on the PHA message boards. Without them, I would have never found my specialist and probably wouldn't be here now. Thank you to all :)

 

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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.