For years following the birth of her son, Jolie experienced pain in her core and difficulty breathing — and medical professionals could find nothing wrong. The truth, eventually discovered after another visit to an emergency room, was that she had a rare and serious condition with no known cause. Now at 45, Jolie enthusiastically advocates for others with Pulmonary Arterial Hypertension (PAH) and cherishes her close family and artistic pursuits. Here she shares an overview of her journey and some hard-won advice.
A Health Mystery Beginning with Motherhood
I first told a doctor “I cannot breathe” when my son was three months old. The doctor said that it was scar tissue on my lung and that intermittent pain was to be expected.
For years to follow, I had flank pains that would make me double over. I just thought, “The doctors will find what is wrong. I’ll be fine.” I went to my PCP countless times over the years and was told I was fine. I figured that if it got worse, they would see what was wrong and help me.
My son was three the next time I went to see a doctor, [saying] I felt like I couldn’t get a deep breath no matter how hard I tried. The doctor said I had anxiety. I wanted to say, “I have anxiety because I cannot breathe.” I wish I would have.
Jolie’s symptoms worsened as she raised her son and studied to be a sonographer, a pursuit she called “a passion more than a career.”
More Difficulties, No Answers
Many doctors and medications later, I was getting worse. I was suddenly on a rapid decline. I went to the ER. I was given a breathing treatment and told by the doctor that I was breathing fine: “There is nothing wrong with you.”
I left the ER believing death was imminent. It took all I had in me to finish school. I needed to graduate for my son. I prayed I would live through graduation. [After that] I would take the time to go to any and every doctor to find out what was trying to kill me.
I graduated and accepted job offers as a PRN sonographer at [two] hospitals. Except for not being able to breath and a nagging feeling that I was going to die soon, life was good.
I pushed patients in their beds and wheelchairs, taking breaks often. I would pretend to look over the patients’ files while I was truly just trying to catch my breath and not pass out.
One day, it hit me so hard I could not breath unless I was lying down. I was brought to the ER and in a few days diagnosed with bilateral pulmonary embolisms and three types of heart failure.
Jolie was also diagnosed with PAH. Her health conditions changed the trajectory of her life. She stopped working and focused on family, creativity and advocacy.
Support For & From Others
I had a deep spiral and crash [and] by the grace of a higher power, made it out alive. As soon as I was able to, I started a nonprofit business. My sister and mom helped me. We gave out information at the world’s largest free fair, gave speeches, did walks, raffles and more. I designed merchandise. I wanted something nice for “PHers.” The website is BreathtakingAwareness.com.
I am art. I love painting, woodworking, welding, anything and everything that I can use to get my inspirations out in an art form. I am passionate about raising PAH awareness in hopes of helping others.
I have a small family. I had my mother for support at times, my aunt oftentimes, my son always, and my sister daily until her very unexpected death. She passed due to a coronary embolism at 40. I got through the most difficult times because of her. Her daughter has been a blessing.
For the last six years, I’ve had a wonderful man by my side that has done and will do everything he can to keep me as healthy as I can be. He takes care of me when I’m sick and never complains. He comes with a very loving family.
My [now 13-year-old] son was always there and he still is. He has taken care of me since he was three. He’s amazing! I [also] have a few friends that stayed by my side.
I am truly very fortunate to have so many people for support. I am forever grateful for them.
I have been on so many medications to find what I like to call my “potion.” I am currently on Adempas, Letaris and Uptravi. I am one of the rare people that has been able to get off of the IV pump for Remodulin, has exercise-induced PAH and has an unidentified type of scleroderma. I am a “PHighter.”
Different medications work better for some [people with PAH], and in combinations can react very differently from one PHer to the next. No one has the same fingerprints. That’s how I look at PAH. No two PHers are the same.
The Wisdom of First-Hand Experience
I would tell anyone that is diagnosed with PAH, new or not, to learn as much as you can about your body and about this disease. The best advocate you can ever have is yourself.
Find a therapist that you mesh with and keep her. Ask your doctor and your healthcare team questions regardless of how silly you think they are. We each have [a] potion and regiment that will work best for us.
PAH takes control of us in varied ways at various times, but at no point can it take control of our spirits or our minds. Remind yourself of that.
Most of all, fight like hell for yourself, your family and friends, and for those PHers that can no longer fight for themselves. Raise awareness. Help others and become empowered yourself.
Diagnosed with pulmonary arterial hypertension, bilateral pulmonary embolisms and systolic/diastolic heart failure