a woman with heart failure hugs a person-sized anatomical heart

My Heart, My Friend

I wouldn’t call it a love-hate relationship, but it’s definitely been a “love-get annoyed with” relationship. My heart worked great until I was 19. I was followed at my local children’s hospital until I was 18 and at that point was told that the genetic condition that had plagued my family for generations appeared to have missed me. I, of course, was thrilled. For the next year, things went great. I graduated from high school and was planning a gap year with the international organization “Up With People.” I didn’t think things could be any better.

It was not happy

A year or so later, my heart decided to get finicky. It was not happy and it did its best to let me know. At times it would beat as though it wanted to jump out of my chest. Other times if I stood to quickly it would give a little hiccup and my blood pressure would drop causing me to feel faint. In later years, after exercising it felt like it was simply saying “okay, you pushed me harder than I wanted so now you’ll just have to lay here and not move for a while.” At this point, I still hadn’t been diagnosed with a heart problem so chalked all this up to being out of shape.

It would be 6 years after getting the “all clear” and many more episodes of near fainting before I would receive a diagnosis of Hypertrophic Cardiomyopathy. And this is when my relationship with my heart changed.

Letting me down

At first, I was angry. “How could you do this to me? The doctors said you were perfect.” I was mad at my heart for letting me down. Potentially keeping me from doing so many things I wanted to do with my life.

Then the anger turned to concern. “How long will you last?” “Will you get worse?” There had already been several instances of Sudden Cardiac Arrest in my family and two members had received heart transplants (side note: as of this writing there have been 7 transplants in my family, my mother was the last).

In the years that followed there have been many times that I’ve been frustrated with my heart. It would work well for a while and then when everything seemed fine, it would act up and misbehave.

Thankful that she is mine

I’m passed all that now. At 30 years post-diagnosis I love my heart. She’s done amazing things and despite having scarring, being too thick in some places, and having numerous electrical issues, she continues to work. She lets me know when I’ve done too much but I understand her now. I know what to do and she does her job as best she can. We make a good team.

Because of her I’ve met some incredible people. People who have had a true impact on my life. My heart rocks! And someday if she needs to be replaced, I will mourn her loss while welcoming her replacement. She is amazing and I am thankful that she is mine.

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