Author Details ‘Living With Death’ And Embracing Life With A Heart Condition : Shots – Health News – NPR

"One of the greatest gifts is to feel alive while you are alive," Katherine Standefer says. She writes about her experiences living with an implantable cardiac defibrillator in Lightning Flowers. Luke Parsons/Hachette Book Group hide caption

"One of the greatest gifts is to feel alive while you are alive," Katherine Standefer says. She writes about her experiences living with an implantable cardiac defibrillator in Lightning Flowers.

Eleven years ago, when she was 24, Katherine Standefer was working as a ski instructor and a climbing teacher in Jackson, Wyo., when she suddenly passed out in a parking lot. She later learned that she has long QT syndrome, a genetic heart condition in which the heart can suddenly quiver instead of rhythmically pumping blood.

"[The syndrome] can lead to there not being enough blood in vital organs, which causes someone to pass out," Standefer says. "If they're lucky, they might wake back up. If they're not lucky, they could die of sudden cardiac death."

Standefer was lucky to survive the parking lot incident, but she had a problem: She didn't have health insurance.

"My first thought was, I need to pretend this didn't happen, go find a way to get insurance and then go see a doctor about this which was just an insane sequence of events after you potentially go into cardiac arrest in a parking lot," she says.

Standefer wound up moving to Colorado, where she had family. A doctor there offered to waive his fee; that helped defray some of her health care costs. Eventually she had a small, mechanical device an implantable cardiac defibrillator implanted in her chest. Now, if her heart stops pumping blood, the ICD counteracts the arrhythmia by sending a shock of electricity, which enables the heart to settle back into its normal rhythm.

Stedefer chronicles the ways her condition and the implanted defibrillator changed her life in the book Lightning Flowers. Looking back, she feels particularly grateful for her present health.

"One of the greatest gifts is to feel alive while you are alive," she says. "As someone who's spent so much of their life living with death as a present threat, it's really extraordinary right now to feel the health of my body and to feel what it means to have this book going into the world, starting some of the conversations I've wanted to have."

On moving to Colorado to establish residency in order to afford her surgery

Once I received the medical opinion that I should probably have an ICD implanted, the question of how that would happen was pretty complicated. And we looked at a bunch of different options, but in the end, my best option was to move to Colorado. My younger sister's surgeon offered to donate his fee if I had the procedure at his hospital. And so, in the space of about five days, I quit my life in Wyoming. I walked away from several jobs and different obligations that I had on the calendar. And I drove to Colorado not knowing how I would exactly establish residency, but knowing that that's what I needed to do.

I spent the first few nights sleeping on the floor of my sister's sorority house. Eventually, I transitioned to a local motel and I was applying for every job I found with insurance and also any service industry job that I thought might just get me residency quickly. I was looking for houses. The question was how do I become a Colorado resident as quickly as possible? Because once I was a Colorado resident, if I went to the hospital that this surgeon practiced at, then I would be able to access social programs that could defray the cost a little bit of an out-of-pocket heart surgery.

On being advised by a nurse to fake a heart attack and go to the E.R. as a way of gaming the insurance system

The time I had spent in Boulder was so distressing, in terms of thinking I was going to die at every moment of every day, and hearing politicians talk about why people like me shouldn't receive health care through health care programs. The Affordable Care Act debates were raging and I worried I would die all the time. And I called into my cardiologist's office at one point and just said, "You know what, I can't do this anymore. Let's just schedule the surgery. I'll declare bankruptcy afterward." ... And [the nurse] said, "You know, the place the hospital writes off the most bills is through the E.R. And I didn't tell you this, but if you were to come in through the E.R., if you perhaps passed out, if you forgot to take your medication and went for a run ..." And her voice just trailed off and it was this moment that really struck me about the way our health care system was actually operating, which is that even the practitioners within it understood that people were not getting the care that they needed, that people's lives were at risk, and there were all of these secret trap doors for moving through the health care system.

I've often asked myself: What if I hadn't been a white, upper-middle-class person with a college degree who inspired this particular form of empathy? ... Would health care providers have stepped up and come to my defense in this way and tried to help me navigate a system that was, in 2009, unnavigable? It was really striking. And at the time, the combination of the surgeon offering to donate his fee and the nurse making herself available to me and offering tips like this, I really felt that they were saving my life.

On the emergency that landed her in the Colorado ER (without having to fake cardiac arrest)

My partner and I drove from Wyoming with a moving truck on Oct. 25 of 2009. We drove to Colorado. We unloaded it so that we could take the truck back before midnight. We lay down in bed late at night and as we lay there, I started having these intense chest pains. What was wild is that this was the exact same day that the nurse and I had talked about as being a period in which the surgeon might be available for this procedure. ... I entered the E.R. and they kept me overnight. And the next day the surgeon came to visit with me and he said, "What would you like me to do?" I told them to put [an ICD device] in.

On what it's like to have a defibrillator in her chest

Cardiac defibrillators are really bizarre to suddenly have in your body. They're about the size of an old pager and there's not naturally room in the body for the device, so they're placing it under the skin above your pectoral muscle, and that skin has to stretch and the muscle has to learn to hold the device in place with scar tissue. So when you first wake up from that surgery, not only is there extraordinary pain, but there's the sense of this metal device that shifts inside you before there's scar tissue to hold it down.

Coming out of that surgery, you have a lot of movement restrictions. I woke up in a sling. ... There's a way, when the device has just been placed in you, that if you straighten your shoulder out, you'll pull on the device and it is very painful. So those of us who have ICDs are often a little bit hunched over on the left side protectively for the device. I woke up in a sling that would keep that side stable and it changed the architecture of my body forever.

On how her health issues ended her relationship

It marked me more than I knew at the time. There was this sense I had in my mid-20s, after Sam and I broke up, where I would be on a date with someone, and I would be in some ways, holding a lighter atmosphere, joking around, flirting, able to be very visibly present to them. And some part of me would be wondering whether or not they could hold this other part of me.

To be 25, 26 years old and to have felt death in your body the way that I had, I felt like I had an understanding of something that I needed someone to be able to hold with me. Sam was an extraordinary human and our problem was not love. But ultimately, I needed more from a partner in a hospital setting than he was able to give, and some of the ways that our life had to change as the result of the things that happened to my body just really disconnected us. At this point, I can say I have been single for over 10 years 10 and a half years. I have never stopped really looking at people and paying attention to how they respond to the scar on my chest, how they respond to the stories I carry.

Heidi Saman and Thea Chaloner produced and edited this interview for broadcast. Bridget Bentz, Molly Seavy-Nesper and Deborah Franklin adapted it for the Web.

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Author Details 'Living With Death' And Embracing Life With A Heart Condition : Shots - Health News - NPR