Since my pulmonary hypertension diagnosis, I’m tragically blessed

We all want to feel a sense of belonging and connection. The tricky part is learning that we can’t force a genuine connection; it has to find us.

Real human connection comes with shared dreams or experiences and is often filled with intense emotions. I didn’t find a sense of belonging until I had my dream career. As a sonographer, I worked within the medical field alongside other like-minded individuals who care about the well-being of others and are passionate about technological advancements in medicine and physics.

I loved being in that fascinating space where math and science meet, where I connected with others who shared my interests. I even considered returning to college to take additional physics courses.

Unfortunately, my dreams and career were cut short because of that horrible word that leads us to a different world: “tragedy.” Everything changed when I received a late diagnosis of pulmonary hypertension (PH). By that time, I had bilateral pulmonary embolisms (blood clots in my lungs) and systolic, diastolic, and right-sided heart failures and had to lie flat to breathe. My life’s trajectory flew straight off a cliff and crashed into a canyon.

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I’d seen at least a dozen doctors, received several ridiculous diagnoses, and had self-treated my symptoms for many years. I’ve had PH my entire life. I’ve tried to get help for it my entire life, too (more on that later), but before my first PH crash, I was driving five hours a day, going to clinicals for eight, and single-handedly raising a child and taking care of a home.

Even though it was a lot to handle, I knew that being busy wasn’t why I was so tired and having so many difficulties. I was going to the doctor or emergency room pretty much once a week for about four months, telling them that both lungs were hurting; that I couldn’t breathe well, walk far, or take stairs; that I felt like I had a big bubble in my chest; and that I was having heart pains. I went so far as to tell one doctor that it felt like air was coming into my lungs, but I wasn’t getting oxygen from it.

No one checked my heart or lungs in any way, nor did they check my oxygen numbers while I was mobile.

I have exercise-induced PH, in which insignificant movement can significantly change my oxygen levels. One week I worked on Thursday, went to the doctor on Friday, rested on Saturday, and ended up in the emergency room on Sunday, unable to sit up and breathe. I was so bad off that the doctors didn’t know if I’d make it through the night, week, month, or more.

But now it’s been 12 years to the day since my diagnosis, and here I am, still kicking it.

And now …

I often think about how lucky I am to have lived through the ordeal, much less improved so much. I attribute my recovery to having the most amazing little boy in the world, a medical background (so I knew exactly what was going on with my body), an incredible response to Remodulin (treprostinil) by IV, a wonderful PH physician, and being, as my family likes to say, badass.

A flier of sorts introduces Jolie Lizana, a new columnist for Pulmonary Hypertension News, and her son, Zaylan. The image at left was taken six months after Jolie’s diagnosis; the image at right is from 12 years after her diagnosis, when she and her son are advocating for the rare disease community at the U.S. Capitol. (Image by Jolie Lizana)

On my last emergency room visit before my near-death, a doctor looked me in the eyes and said, “I don’t know what to tell you. There’s nothing wrong with you.” I lay in the hospital bed for eight months out of the first 12 post-diagnosis, wondering how many people went undiagnosed as I had — and how many people died as a result. I was pissed.

As soon as I was able-bodied, I began raising awareness of this cloaked disease. I had to help others with PH get diagnosed before their dreams were crushed or worse. I felt morally obligated to do it.

Still, I had no idea that I’d ever consider myself an advocate. I don’t think people grow up wanting to be advocates; they become one after being wronged. I also never imagined I’d be a columnist, sharing my PH journey and giving purpose to my pain.

It’s strange how our lives can be unfortunate and fortunate at the same time. While I don’t wish this disease on anyone, me included, I must say I feel so blessed to be here with all of you. I feel tragically blessed. I hope to bring you as much silliness and giggles as I do fearful admissions and vulnerable truths.

Thank you for allowing me to be part of the Bionews PH community and for welcoming me to the team as the newest PH columnist. I’ve once again found a sense of belonging and purpose, and I’m oh so grateful!

Note: Pulmonary Hypertension News is strictly a news and information website about the disease. It does not provide medical advice, diagnosis, or treatment. This content is not intended to be a substitute for professional medical advice, diagnosis, or treatment. Always seek the advice of your physician or other qualified health provider with any questions you may have regarding a medical condition. Never disregard professional medical advice or delay in seeking it because of something you have read on this website. The opinions expressed in this column are not those of Pulmonary Hypertension News or its parent company, Bionews, and are intended to spark discussion about issues pertaining to pulmonary hypertension.