By Jesus Cornejo

Last weekend it was the Homecoming Dance in my High School. My date dumped me, but nothing would ruin the occasion. I wore a suit, a nice shirt, and bowtie. At the party, not having a date didn’t stop me from dancing. As the music started, I embraced my oxygen tank and hit the floor without hesitation. Then, a miracle happened: Many girls approached and invited me to dance. At the end of the night, I was the most popular and tired guy of the party.

The Journey

I was born and live in the middle of nowhere — in the Valley of Coachella. Not the Coachella of endless raves, where famous artists perform every April. No! My Coachella Valley is full of dust storms and heatwaves with temperatures of over 118 degrees. This environment adversely affects anyone who suffers from respiratory diseases — asthma, cystic fibrosis, pulmonary hypertension (PH), COPD… you name it. And if the patient happens to be a child, the nearest pediatric hospital is miles and miles away.

Before this exhausting journey of being diagnosed with pulmonary hypertension, I had a harder one. Doctor after doctor failed to find out what was affecting me. You could see that I was I different from other kids of my age. The dyspnea (shortness of breath), the fatigue and the inability to play without feeling exhausted where signs of something deeply wrong. As the years passed, the level of dyspnea changed from just noticeable to extreme discomfort. This scared and disturbed me because it was huge change. Other symptoms that started to develop were chest tightness and tachycardia. I was diagnosed with asthma long ago, but the medicines weren’t helping.

The new symptoms made me want answers, so my Mom took me to a different doctor. He prescribed an inhaler for my shortness of breath and chest tightness. I hoped this would solve the downward spiral I was in. This didn’t solve it, because I didn’t have asthma. More studies were needed.

Even though I got referred to an amazing pulmonologist, change didn’t happen fast enough for me. Taking the new medication didn’t help either. This unknown disease got worse as time passed. It was horrible, and I honestly thought I was dying. Being filled with all this Albuterol was a huge adrenaline rush. My physician told me to use it as needed, but that soon became all the time. My health declined to a point that I need to be admitted to ICU twice.  Then, after this roller coaster of madness, I finally was diagnosed with pulmonary hypertension.

After diagnosed with PH, I felt many mixed emotions. But, as unbelievable as it can sound, my main emotion was that of HAPPINESS. Why happiness? Because I was drained by the insane journey of “not knowing.” Once that the problem was identified, and even when the news wasn’t great, I found some peace and tranquility. As I listened the words of my doctor, my eyes got watery. This feeling of relief came over me like a tidal wave, lifting this huge weight off my chest.

Now WE, as a team, can finally do something about my condition. The hard part of adjusting to PH is now my life’s work. My condition was so extreme that I was forbidden to attend school and even walk five steps. This was a shock.

Things started to bottle up as I watched the world pass without me.  I began to write about adjusting to life with PH pain and depression. I found a new way to express my feelings in writing poetry. This helped me a lot while I was trapped in the house.

I also got a new perspective on life, noticing the amount of love I received from my Mom, Stepdad, and Dad. This love was exactly what I needed in life. I learned to appreciate my loved ones and value them more. When going through these bouts of depression I found hope! This quality called hope pushed me over the road blocks of depression and brought me back to life.

At this moment, I feel alive again. I am reincarnated! Finally, I received the approvals to attend school. I’ve been going to school for almost a year. Now that I’m going to school, I am enjoying and value my friendships like the precious moments that are in my life. I try to make every day count. There’s huge feeling of joy and positivity in my life, which I had missed for a long time. Changing what you can is what I look for through this tough process.

When it comes to my goals in life, the first goal is to be healthy. From there I want to live my life and start a career, become a paramedic or a nurse, and give back to my community. I will not let this disease hold me back from that!

PH Bill

This post is part of PHA’s The Right Heart blog series. Find out how you can share your story. Click here.