OUR JOURNEYS

Patient story

Julie Clark

In May of 1986, I received my Bachelors Degree from North Texas State University. I was five months pregnant with twins but I did it!

In May of 1996, eight months after my fourth daughter was born, we got a bacterial infection, and were taken to the ER but my baby got to go home. I on the other hand was ventilated and learned that the infection had turned to ARDS and wound up on life support for two weeks on a paralyzer drip and with the infection in my heart known as Endocarditis found on an echocardiogram which also showed severe pulmonary hypertension with pressures in the 60’s. I guess they found this a trivial thing as it was never mentioned to me.

Did the ARDS cause me to develop PAH? It is anyone’s guess, but with years of an un-healthy lifestyle of diet drugs, street drugs and smoking, and symptoms of dizziness and repeated fainting spells going clear back to elementary school that were never explained I will never be certain.

Anyway, a few years after my brush with death, I went in to see my PC for the swelling in my feet and was sent to a specialist and cardiologist who first diagnosed me with PH with a tricuspid regurgitation. He wanted to do a right heart catheter and I just couldn’t bring myself to do it. My circle of friends and too much reading on the internet had me afraid I would die right there on the table, and what would happen to my girls? I decided I didn’t need doctors, they tend to keep you in a sick mode; after all I didn’t LOOK sick and got through my days fairly well. I had walked on jiggly fluid filled feet while pregnant and I could do it again.

Then I lost the only two men in my life that I cared about and who shared my views that I was just fine … my dad and my boyfriend—the second of whom died in my arms from his heart valve problem. In an instant he was gone and could not be resuscitated. My dad had me convinced I had a different type of PH than the one I read about on the internet with a 3-5 year life span after diagnosis. What a relief as that was some scary stuff. My dad being a doctor himself surely knew what he was talking about and he had consulted with my cardiologist. He passed away in May 2000, and with him went my safety net.

I decided to have the right heart catheter—I had to know for the sake of my girls. Well, the doctor told me that with my pressures in the 90’s we were going to tackle it hard and aggressively and tried but failed to find a specialist for me who would take my Medicaid. So I found him! I got on the internet, found the PH Association website and found an email address for a doctor in Dallas that didn’t take my Medicaid, but I wrote him for suggestions as to what I should do. He told me insurance or not when it came to PPH he would be happy to help me. He saw me for eight months, never getting paid and then they changed my insurance to standard Medicaid so that he could. Tracleer had just hit the market so I was lucky to start my treatment with an oral medication. I believe it has been another seven years that Dr Kuiper has been my PH specialist. He has seen me through the ups and downs of this disease but always with an attitude that he wouldn’t see me go down without a fight.

In May of 2006, I was put on SubQ Remodulin and now have switched to IV. After twelve or more years with this disease I believe my PH specialist has helped me beat the odds and I owe my life to him and the PH Association for being out there for me. I still have a lot of fight left in me and with all this support and the help from Texas Medicaid who pays the $200,000 or more for the medicines I need, and Accredo who is just a phone call away keeping me on track with my meds, I know I don’t have to go it alone!

Thanks to all of you who have shown you care. In May 2016, who knows, maybe I can brag about a cure being found, if not I still rest assured some awesome and miraculous milestones with have been reached!

 

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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.