Tragically Blessed: My Journey Through Misdiagnosis, PH, and Advocacy
Jolie
State: Louisiana
Congressional District:
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Diseases
Chronic Pain, Immune Disease, Lung Disease, Mental Health, Rare Disease
Issues and Challenges
Jolie has encountered: Access to Expert Providers, Medicare / Medicaid Issues, Mental Health Access, Rare / Underserved Disease, Disability, Gaslighting, Invisible Illness, Social Security Disability
My Story
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 tragically late diagnosis of PH. By the time I was diagnosed, I had bilateral pulmonary embolisms, 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 in a canyon.
I had seen at least a dozen doctors, received several ridiculous diagnoses, and had self-treated the signs and symptoms for many years. I’ve had PH my entire life. I’ve tried to get help for it my entire life, but before my PH crash, I was driving 5 hours a day, going to clinicals for 8, single-handedly raising a child with all of the responsibilities that come with taking care of a child and a home. Even though it was a lot to handle, I knew that wasn’t why I was so tired and having so many issues.
I was going to the doctor or ER pretty much once a week for about 4 months, telling them that both lungs were hurting, 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 the air was coming into my lungs, but that I was not getting the oxygen from it. No one checked my heart or lungs in any way, nor did they check my O2 stats while I was mobile. I have exercise-induced PH, where moving causes a significant change in O2 levels.
I worked on Thursday, went to the doctor on Friday, rested on Saturday, and ended up in the ER on Sunday, unable to sit up and breathe. I was so bad off that the doctors didn’t know if I would make it through the night, week, month…but now it has been 12 years to the day since my diagnosis, and here I am, still kicking it.
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 (knowing exactly what was going on with my body), having an incredible response to the IV medication, having a wonderful PH physician, and being, as my family likes to say, bad ass.
The last ER trip 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 8 months out of the first 12 post-diagnosis, wondering how many people went undiagnosed as I had and how many people died because doctors didn’t do their damn jobs. I was pissed. As soon as I was able-bodied, I began raising awareness of this cloaked disease.
I had to help others get diagnosed before their dreams were crushed or worse. It was something I felt morally obligated to do. Still, I had no idea that I would ever consider myself an advocate. I don’t think people grow up wanting to be advocates. You become an advocate after being wronged.
It’s strange how our lives can be so 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 have once again found a sense of belonging and purpose, and I am oh so grateful!
My Motivation and Inspiration
My motivation to better myself is my son. My motivation to help others is driven by empathy and an inability to say, "That's just the way it is."
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