Katherine Standefer on Growing Through a Genetic Heart Condition

Katherine Standefer, author of Lightning Flowers: My Journey to Uncover the Cost of Saving a Life, went into cardiac arrest at the age of 24 and her whole life changed.

Her sister had recently been diagnosed with a genetic heart issue called Long QT syndrome and needed a cardiac defibrillator implanted in her body against the threat of sudden death. Standefer knew something like this was happening to her. Her situation was complicated by being uninsured in a time before the Affordable Care Act, so she had to figure out how to get heart surgery while uninsured in a state without a lot of resources.

Over the years, the story of living with this heart condition remained very complex. She became septic at one point and almost died. Later in her experiences with cardiac defibrillators, she had a breakage in her device that it was hard to get the right care for and she ended up with a snapped off, stripped nest of wire stuck in her right ventricle. And while her story has gone through many phases, it is also ongoing.

The way Standefer got through the initial diagnosis and treatment was by putting weight on certain relationships because she truly couldn't take care of herself. This included trusting medical professionals who said they were going to donate their fees. It required her to lean heavily on her parents who paid for a lot of the unexpected costs. It required her to trust both family members and friends who stepped in to show up for her in the hospital and in the days after she left the hospital.

She learned that her life has been shaped by policy, by the lack of healthcare access in the United States, and then by healthcare access that is unfortunately deeply flawed because the value that sits at the center of our healthcare system is profit.

Standefer also learned that death is not something that any of us can fix, that to be human is to live despite the fact of death. In the beginning of her journey, she wanted to make the threat of death go away. She didn't know how to live when death was nearby, when she could feel it breathing on her. Through the course of her experiences, she saw that a defibrillator can solve one way that it's possible to die, but it can also introduce other things that can go wrong. And a defibrillator cannot prevent a lot of other ways of passing away that are possible.

Standefer's advice to others going through something similar is to ask a lot of questions of your medical practitioners, get second opinions, and do your own research. Become your best advocate. She doesn't have procedures at minor hospitals anymore and doesn't think other people with rare conditions should either because you deserve the practitioners who best understand what you're facing. She recommends getting to whoever the expert is on your rare condition, rather than treating it primarily at your home hospital.