‘He told me, ‘It’s all in your head.’ I hoped something bad would happen to me so I’d be taken seriously.’: High schooler diagnosed with Pulmonary Hypertension undergoes open heart surgery, ‘I’m grateful for this second chance at life’

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“Before my sophomore year of high school, I’d say I was a pretty normal girl who went to school and hung out with friends. That being said, my sophomore year took a drastic, unexpected turn. It started out during the end of July and early August before the school year began.

Band camp started and I noticed I was having trouble breathing. It was different from your typical breathlessness while working out, but I just assumed I was getting sick or something. At first, it was just while working out or marching, but it gradually got worse.

When we first went to my primary care physician, he diagnosed me with asthma and gave me an inhaler to use but it didn’t help. Then he diagnosed me with anxiety-induced hyperventilation, then told me it was all in my head, then went back to severe asthma over the course of a few months.

By this point, I couldn’t even walk from class to class without being short of breath and I had to have accommodations made for me, so I had more time to get to my classes. I remember hoping something bad would happen to me so someone would take me seriously and realize there was something wrong.

My mom finally just told my primary care provider, we needed a referral to a pulmonologist at a children’s hospital because nothing was working. At our appointment that December, after about five minutes of the specialist being in the room with me and listening to my heart and lungs, she noticed I had a heart murmur.

I had never had one before and my doctor had never mentioned it. She then immediately sent me to get an echo done and that’s where they found that my pulmonary pressures were extremely high. They sent me straight to a room and told me I wouldn’t be going home. I had so many tests done to figure out what was going on.

A day or two after being admitted, a right heart cath showed my lungs were filled with blood clots. I was then diagnosed with Chronic Thromboembolic Pulmonary Hypertension. Other than that, they had no idea what to do with me because they had never seen this in their hospital, let alone in someone my age.

I felt very alone and terrified of what was going to happen. There was one specialist that came in to talk to my mom and me. They told me I would never get better. All I remember is crying hysterically like they do in the movies. I’m sure he meant it differently but saying it like that to someone who has just had their life completely changed wasn’t the best way to do it.

My doctors contacted the doctor in San Diego that pioneered the surgery and specialized in CTEPH to get some help. He told them to wait three months to see if blood thinners would dissolve the clots.

They let me go home in time for Christmas, but I wasn’t able to continue going to school so I had to switch to online classes. I was constantly scared and worrying about the worst, so it was no vacation. When the doctors realized the blood clots weren’t dissolving, they went ahead and scheduled an open heart like surgery, called a PTE, for March 2017.

I was still getting worse and shortly before we left for San Diego, the doctor told us I was a few weeks away from heart failure. On March 16, 2017, I had an open heart like surgery and it went well. After the surgery, the doctor came out to talk to my mom and told her it was way worse than they thought- they didn’t know how I was even able to eat without being short of breath.

My right lung was 90% full of clots and a small portion died off. My left lung was 70% full of clots. I felt much better than I did before the surgery. I am extremely grateful for the amazing doctors I’ve had and the second chance at life I’ve been given. Few people get that. I am not 100% back to the way I was before.

I still get shortness of breath (though not as bad), dizziness, chest pain, and I’m constantly fatigued and exhausted. Although I still have some physical struggles, the biggest ongoing hurdle is my own mind. I’ve never been an extremely confident person, but I feel like this experience took any trace of confidence and self-esteem I had.

The disease itself makes me insecure but the weight I gained as a result of not being able to do anything has also affected my confidence. I know I need to be as healthy as possible to keep my heart and lungs healthy as well, so I’ve been working to make the changes I need.

Some days it’s hard to see all the progress I’ve made since the start of all of this instead of what I haven’t made. I’m even more self-conscious now and I don’t know how to love myself as I should. I look up to people who have figured out how to be confident and proud of who they are and hope to one day be like that too.

I love reading positive stories about other people’s journeys through things like this and what they’ve done to get through the hard times. It helps me to remember there are still a lot of positives that came from my situation as well. I’ve learned to never take anything for granted and that I’m lucky to have such a supportive family. I’ve even found a career path in radiology, and eventually echocardiography, that I am excited to be currently working towards.

I used to be bitter and angry about this happening to me because it made me grow up a little faster, but it’s also taught me so much about myself and life. I’m slowly figuring out who I am and who I want to be, and hopefully I can continue to grow and figure out how to be confident in my own skin.”

This story was submitted to Love What Matters by Chloe Ball. Submit your own story here, and subscribe to our best stories in our free newsletter here.

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