My wonderful, vibrant sister passed away in March 2023 at only 36 years old. I was commuting to work on a Friday when I received the news, just before a weekend trip we were supposed to take together.
We eventually learned from the forensic pathologist that she had a genetic heart condition known as ARVC/D. This condition causes the right ventricle walls to be replaced by scar tissue, resulting in a fatal arrhythmia.
I wish I could say this was a total surprise, but she had been experiencing symptoms. About a year prior, she sought emergency care because her heart was racing and skipping beats. She was terrified. While in the ER, she messaged me, worried that she was making a big deal out of nothing. Rather than providing real help, the medical staff performed a simple EKG and told her she was merely “stressed.”
Following that, she visited her primary care doctor with the same issues. She used a heart monitor for a week and had another EKG. Much like the emergency room staff, he dismissed it as anxiety. She admitted to me that while she felt stress, it didn’t feel intense enough to cause these physical problems. She never saw a cardiologist because she felt it would be pointless. I am haunted by the fact that I didn’t insist she go.
Since discovering the cause of her death, I have been filled with a deep, unrelenting rage. She had so much life left to live. She was an incredible sister and my closest friend. Her future was stolen because those doctors didn’t care enough to investigate further or simply trust her when she said something was wrong.
I can’t change what happened, but I want to remind everyone to be your own ADVOCATE. Don’t let a physician make you feel small. Stand your ground and listen to what your body is telling you. You understand your body better than anyone. Demand the tests. Seek a second opinion. Your life might literally depend on it.
EDIT: I appreciate the support from everyone. I want to clarify a few things based on the feedback.
To those sticking up for the doctors: I realize that primary care physicians are often undercompensated and overworked in the American healthcare system, which prioritizes profit over patient time. I’m sure it’s a high-pressure environment, and I believe most people enter medicine to help. I also know family doctors aren’t specialists; I didn’t expect a specific diagnosis from her PCP.
However, when a patient is clearly distressed about their heart, the response shouldn’t be to run the bare minimum tests and tell them to just relax. Suggesting a cardiologist as an afterthought in a defensive way isn’t enough.
My intent was to motivate you to book that appointment, seek another perspective, and trust your instincts. Don’t worry about being a nuisance to your doctor. Seeing comments from people who were moved to schedule their own checkups has been very emotional for me. Even if I’m just venting, I hope these words reach someone who needs to hear them.