30 Days of PH: Taking Back Control of My Life Has Empowered Me

Photo courtesy of Roxanne Giustini

Day 9 of 30

This is Roxanne Giustini’s (@steelergirlrock) story:

I was diagnosed with idiopathic pulmonary arterial hypertension (IPAH) in January 2016. This was not my first experience with a strange new disease.

In 2002, after a year of terrible symptoms and baffled doctors, I was diagnosed with adrenal insufficiency. I had lived with that for over a decade when I began having “odd” symptoms again.

I was experiencing horrible swelling all over my body, shortness of breath, and, worst of all, fainting spells. Initially, the doctors blamed my existing conditions and tried adjusting my medications. This went on for over a year while I kept getting worse, so I began researching my symptoms online (I know … a doctor’s worst nightmare!).

I read about a heart condition with similar symptoms and asked to be referred to a cardiologist. He knew immediately that something was very wrong and within a week, I went to see a pulmonologist.

Finding out that I had IPAH was a horribly frightening discussion to have with the doctor. The treatments, the prognosis, and the prospect of a possible heart/lung transplant in the future were terrifying. I went through the “why me” phase, the grieving, and the anger. At 39, I had thought I would have all the time in the world.

Once I came to grips with what I had to face, I decided. I had no say and no control over what had happened to me, but I did have control over how I dealt with it. I did have control over my actions.

I am determined to do everything in my power to be as healthy and as happy as I can: to eat right, to exercise, and to find joy in my family and in all the little blessings that we are given. I firmly believe that those decisions and that determination have impacted my health as much as, if not more than, all the medical treatments I’d received.

Taking control of what I could control has empowered me. I do have an effect on my health, my future, and my happiness, and so do you!

Pulmonary Hypertension News’ 30 Days of PH campaign is publishing one story per day from someone who has been affected by the disease for PH Awareness Month in November. Read the full series for more stories like this, and follow us on Facebook and Instagram, using the hashtag #30DaysofPH.