Friday, 1 August 2014

PHighter Friday: Evelyn

On December 21, 1988 I was born a preemie. A few days later I was diagnosed with a small heart murmur, Dextrocardia. Dextrocardia - is a condition in which the heart is pointed toward the right side of the chest instead of normally pointing to the left. I was also diagnosed with Mitral Valve Prolapse (MVP). MVP occurs when the valve between your heart's left upper chamber (left atrium) and the left lower chamber (left ventricle) doesn't close properly. 

Despite all of this, my parents were told not to worry and that I would grow up to be a healthy young lady. Every year I would just come in to get a check up. As a child I was very active, always riding my bike, running around with the neighborhood kids and swimming. I don’t remember ever getting out of breath.

It wasn’t until my preteens that I noticed my breathing had started to decline, and that I couldn’t keep up with my friends anymore. Even if we were just taking a walk I often had to stop to catch my breath or I was given piggy-back rides. Luckily for them, I was a tiny little thing. But that didn’t stop me from doing everything they did even if it took me a little longer or it meant we had to walk slower because of me. At the age of 15 I was in the10th grade and I had two classes I had to walk outside to get to. It didn’t seem to be a problem until the cold weather started to come in. Once again, my breathing was acting up and I often had to take a break causing me to be late for class. I ended up going to the doctors and they did a few tests to find out I had asthma. They gave me an inhaler and sent me home. A month passed and I didn’t see a difference in my breathing even though I was doing my inhaler as instructed. A few times walking to class my lips would be tinted blue but I wasn’t alarmed because it was the middle of December and it was freezing out.

One morning walking to class I felt myself starting to get a panic attack. The school nurse sent me home. I couldn’t seem to calm myself down so I laid down on my couch to see if a nap would help. I hoped I would wake up feeling better but instead I woke up about ten minutes later drenched in my own sweat. I was coughing uncontrollably. I could feel myself passing out, everything seemed to get blurry around me. I woke up a few seconds later to my mother hovering over me, crying hysterically. I was in heart failure and if my mother wasn’t there to give me CPR I don’t know if I would be here right now telling you my story.

I was rushed to one hospital and then another, finally landing at Children’s Hospital of Philadelphia. I was so weak that I couldn’t talk but I was very aware something was wrong. I pushed myself to not fall asleep again for fear of not waking up. I was 15 years old and I was not ready to die. Children’s Hospital Of Philadelphia would soon become my second home and family. I was tested right away for pretty much everything you can think of. One of my earliest memories was of a Doctor coming to see me in the Cardiac ICU. He told me he thought he knew what was wrong but that I’d have to have a right heart catheterization to officially diagnose it.

A few hours later I woke up with a port in my chest and medicine flowing through it, into my body. As sick as I was I truly did not care what the doctors needed to do. I just wanted to get better and get out the hospital. At this point I didn’t realize how serious the situation was. I was finally diagnosed with Pulmonary Arterial Hypertension by my Pulmonary Doctor, who is now like a second father to me. I will never forget when he told me “you’re crying, that means you understand.” He promised me I would walk out of Children’s Hospital but I didn’t believe him. All I saw was a dark cloud over me for the longest time. He was true to his word, though, and I can never repay him for being the amazing person he truly is to me, and many others.

Pulmonary Hypertension can be very hard to wrap your head around. There are many questions to ask and some will always be unanswered. It’s scary for the patient and also for your friends and family. I am truly blessed with my support system. As long as you have people around you that care about you, things will be okay. While I was in the hospital getting used to my new life with PH I met my first PH friend. She is no longer with us but she will forever be in my heart. I’d be lying if I didn’t think I was going to be next. Whether you have PH or not though, everyone’s body is different and that’s important to remember.

I was finally well enough to be sent home. Going back to school with PH was very very hard; being a teen itself can be hard. Your teenage years are when you start the journey to discover who you are and there I was, hit with a curve ball with my health. But in some weird way it has shaped me to be stronger than I ever imagined. I’ve met so many wonderful people due to PH. I introduced PH to every classmate and teacher I had over my high school years. I figured, if I’m going to have it, I might as well make it aware and known. My way of dealing with things was to talk about it and educate others. All in all it makes me value life so much more than I ever would have if I didn’t have PH. Because of it I know what it’s like to be at the bottom. Now I’m at the top.

I wish I could meet everyone who is newly diagnosed with PH and let them know they’re going to be okay and not to focus so much on the negatives, which I know is easier said than done. Always keep your head held high with pride and know who you are. PH does not define you or own your life. Everything will become second nature and fall into place and that port you’re attached to 24/7 or all the pills you have to take everyday will become completely normal and a part of your routine. There will be times when you will question “why me?” and like I said earlier, some questions might never be answered. Just know that even though PH might take you for a ride every once in awhile and you will have some bad days, just go with it and remember you’ve come a long way already.

I’m 25 years old today and just celebrated my ten year anniversary with PH. I’m excited to celebrate many more.

Make sure to follow Evelyn on Instagram to see what she is up to!

The PHight or Flight Project would like to thank Evelyn for sharing her incredible PH journey for PHighter Friday!

* If you have an inspirational PH journey that you would like to share to help provide hope to those who are newly diagnosed, please contact me at More information about sharing your PH journey for a #PHighterFriday can be found under the Share Your PH Journey/Contact tab.

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