30 Days of PH: With PH Since Childhood, I’m Hyper-aware Now

Elena takes a photo with her brother Kiril, and mother Lori. (Photo courtesy of Elena Dimova)

Day 1 of 30

This is Elena Dimova’s story:

I was born in the middle of 1991 in a country known as Yugoslavia. By the end of the year, Yugoslavia was no more.

The doctor told my family I was healthy. Well, sort of. I had a small hole in my heart, but the doctor said it would go away as I got older.

Fast forward three years and, with the potential of the Bosnian war spilling over into our country, my family decided to move to America. At a routine doctor’s visit, my physician noticed something off. A couple tests later, I was off to open heart surgery. Turns out my heart condition got worse.

I healed well from the surgery — kids bounce back pretty easy — but I still wasn’t 100%. I was 3 years old, turning 4. Little by little, signs started presenting themselves. Diagnosis: pulmonary hypertension.

My parents were concerned. Me? Not much. I was used to not being able to breathe well. I was always behind when running after my little brother or my classmates. I just learned to tolerate my “weakness.”

Now that I’m in my 30s, I’m hyper aware of my PH. Those of us who have had PH since childhood are, in my opinion, very self-aware of the changes we’ve experienced with the disease as we’ve aged.

Personally, depression is a problem and can be quite debilitating. I am now on sub-Q (subcutaneous treatments, administered under the skin) and the pain from changing sites is a major contributor to that depression. Pain messes with your brain, especially when you face it so often. I always seem to push through somehow. It’s pretty amazing how much the human body can endure. You just have to be willing to endure it.

Don’t get me wrong, though! I’m living my life how I want, within the bounds of my condition. I’ve joined a gym and I’m slowly building up my muscles and my stamina, through cardio and yoga stretches. In the long run, along with a healthier diet — bad college/university snacking habits! — I feel I can get better. I look forward to enjoying my life despite having PH.

Pulmonary Hypertension News’ 30 Days of PH campaign will publish one story per day for PH Awareness Month in November. Follow us on Facebook and Instagram for more stories like this, using the hashtag #30DaysofPH, or read the full series.