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Patient story

Jacqueline Kirk

"I have really come to see how the people around me that I love are really extraordinary....giving, selfless, and positive."

I am a 29 year old woman living in the San Francisco Bay Area. I was diagnosed in November 2004 with primary pulmonary hypertension after having a grand mal seizure in my evening ballet class at San Francisco Dance Center. I had noticed over the years that all of the physical things that I loved to do were becoming extremely difficult or even impossible. I have always been an athlete—soccer, basketball, softball, track and field, road & mountain biking, cross country, dance, skiing, backpacking, scuba diving, snorkeling, rafting, hiking—you name it, I was sweating while doing it. I guess my little skinny ballet teacher, the wonderful and warm and supportive Kathy Mata, finally had a class that was too hard for me, and from that moment on my life has been completely transformed. In the time since my diagnosis, I have really come to see how the people around me that I love are really extraordinary....giving, selfless, and positive.

I have been on Flolan since my diagnosis, after a scary rebound reaction during testing that left me in the ICU for 3 days and in the hospital for 6. My doctor is the warm and motherly Dr. Teresa DeMarco at UCSF Cardiology. I see her regularly, along with Nurse Coordinators Georgia Davis and Amanda Brown. I can't ask for a more supportive team of doctors and nurses. They all want to kill me because I slack on my blood tests. The thing that I probably have the hardest time with when it comes to Flolan is...don't laugh: fashion. I love beautiful clothes and I love to wear beautiful things so it often pangs me to have to pass up some beautiful silk camisole or low-cut dress because of my Hickman. Ask my friends and family, I am vain! :o) Although my pump fits beautifully in my new Balenciaga Le Dix handbag! And now, I focus more on having beautiful shoes since my upper body is kind of compromised!

I am not going to talk too much about what I can't do because of my condition—actually, most of the things that I want to do that I can't do are because of the complicated logistics of Flolan (uh, no scuba diving and no safaris to hot sub-Saharan Africa...boo-hoo) and not PH. The Flolan works really well, so I am still active, going to ballet 4 times a week, walking, and hiking. I am going to try to bike ride again once San Francisco's summer gets here (November, anyone?).

"I am not going to stop doing what I love because it is a little more difficult."

I have traveled a lot in my life, hitting every continent now except Antarctica. I will continue to do that. I was in Europe again over the 2004 holidays, and will go to Latin America by the end of the year. I need to be a touch more organized because of the Flolan, but it is worth the extra effort. I am not dead yet and I am not going to stop doing what I love because it is a little more difficult.

It is a cliché, but thinking about and being faced with the possibility of dying young makes me want to cram in as much experience of this world that I can. If you ask my family and friends, they will all probably tell you that I have always been that way—trying to maximize every moment, trying to compress time because life is short and the world is so awesome that I don't want to miss anything. They're always saying, "Slow down, chill out Jacki!" I couldn't have this positive attitude if I did not have the love and support of the people around me. My boyfriend Thomas has been there through the whole thing, giving of himself even when it is too heavy. My parents have been extraordinary, and my friends Aime, Yuka, Brooke, Steven, Louis, Helene, Yannick, Travis, Holger, Gwen and Dennis are my little cheerleaders. I don't know if I wouldn't have already given in to PH if it were not for them.

 

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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.