My HCM Journey technically started at birth. As a baby, I was pretty fussy, didn’t like people to hold me, and slept irregularly. My mom kept telling my pediatrician something was wrong. It was very hard to understand the symptoms since I couldn't speak. When I was 5 months old, my mom finally got an explanation for my struggles. I was diagnosed with hypertrophic cardiomyopathy. At just 9 months old, I had a myectomy, an open heart surgery that removes excess heart muscle. Once one piece of the puzzle went into place, everything else just stumbled into place from there.
We did not know that HCM was in our family until I got my diagnosis. At that point, my grandparents started telling my family that they had some family members pass away from “some heart thing” that they didn’t know what it was. It wasn’t until later in my dad’s life that we discovered that he had HCM as well. He passed away when I was 8 years old. It really showed that genetics are a huge part of this disease and if you ignore it, there are terrible consequences.
Having this heart disease that lasts a lifetime has a lot of mental health effects that can a bit of a challenge. I have developed anxiety and depression as a result of the experiences I have had due to HCM I am prone to panic attacks, which is a really bad thing while having a heart disease. When I’m in the middle of a panic attack, I can't breathe, I’m hyperventilating, my heart is racing. None of that is what we want for HCM. I am trying to find tactics that work so my heart isn’t under so much strain.
As a 24-year-old woman, a lot of the treatment plan I make today will impact my goal to have a family at some point–from the valve I will get someday to the medications I am going to be on and the genetic testing I have done. I want to have a kid, but I have to be sure the partner I am going to be with is comfortable with the expenses of IVF and that my last trimester is likely going to be pretty rough. That’s the negative of having a HCM diagnosis early. It’s a lot of things I have to piece together to create the perfect treatment for the rest of my life. It’s a lot more planning. It’s a lot more thinking.
On another note, HCM has not been all bad. It actually brought me to my dream job. During one of my many hospitalizations, I met an amazing woman who brought it numerous drums, a keyboard and a warming smile. She introduced herself to me as a Music Therapist. Being in middle school at the time, I rejected her services because I was “too cool for that”. On a walk later that day, I saw the same woman with a little boy. He was beaming with smiles and joy while playing the many instruments. I knew in that moment, I wanted to be a Music Therapist. Thanks to HCM, I am overjoyed to say I have achieved that dream and a Board Certified Music Therapist.