Author Details 'Living With Death' And Embracing Life With A Heart Condition : Shots - Health News Katherine Standefer was uninsured and working as a hiking guide when diagnosed with a genetic heart condition. She chronicles her experience with an implanted heart device in Lightning Flowers.
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Author Details 'Living With Death' In Her 20s And Scrambling For Life-Saving Care

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Author Details 'Living With Death' In Her 20s And Scrambling For Life-Saving Care

Author Details 'Living With Death' In Her 20s And Scrambling For Life-Saving Care

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This is FRESH AIR. I'm Terry Gross. Dave Davies has today's interview. I'll let him introduce it.


Aspiring writers searching for their voice are often advised to write about something they know. Our guest today, Katherine Standefer, has published her first book, and she didn't have to look far for a fascinating story. For years, she's lived with a medical device embedded in her chest, an implanted cardiac defibrillator, a tiny version of the machines in hospital rooms that deliver shocks to someone whose heart has stopped beating or has developed a dangerous arrhythmia. Standefer's device was implanted 11 years ago, when she was 24.

Her book chronicles the ways her condition and the defibrillator changed her life, like experiencing accidental jolts of electricity to her heart as well as her journeys to Africa to visit mines where the precious metals used in making it are extracted. She wanted to explore the human cost of creating these devices. And she writes about making complicated medical decisions with potentially life-or-death consequences while living with little income on the margins of the nation's health insurance system. She was often struggling to maintain medical coverage while Congress was debating passage of or seeking to abolish the Affordable Care Act.

Her memoir is called "Lightning Flowers: My Journey To Uncover The Cost Of Saving A Life." Her previous writing has appeared in Best American Essays in 2016. She earned her MFA in creative nonfiction at the University of Arizona and is now a professor at Ashland University's low-residency MFA program. She joins me from her home outside Santa Fe.

Katherine Standefer, welcome to FRESH AIR. I thought we'd begin with a reading. This is a powerful moment, and it's the way you start the book. You want to just share this with us?

KATHERINE STANDEFER: Sure. (Reading) Prologue - Tucson, Ariz., 2012. Nothing can prepare you for what it feels like to be shocked by an implanted cardioverter defibrillator. Like a badly spliced film reel, my memory of the night is fractured. In one instant, a player on the other intramural soccer team had fallen, and the game stopped. He was getting up, brushing his thighs. In the next, my hands became claws. A maul cracked open my chest with a sickening thump, a hot whip tearing through my back. Did somebody kick in my spine? And then I knew, and I was screaming.

There's no way you wouldn't scream if you felt it, my sister had said. By then, the defibrillator had been in my body for three silent years, resting loyally above my left breast, keeping watch for the arrhythmia that could send me to the ground unconscious, with a heart quivering rather than pumping blood. Now on a crisp November night in Tucson, Ariz., I dropped to my knees in time for the second shock. What if it doesn't stop?

I knew something was wrong, either with my device or with my body, but probably my ICD. If it was an arrhythmia, I should have been collapsed, unconscious, not sharp and alive like this, staring at the backs of houses at the edge of the field, their kitchen lights spilling dully out the windows as I screamed - call 911. A third shock. You can either scream or breathe, a voice inside me said. And I began to pull in air, culled heavy breaths, the way I'd learned to breathe into pain in yoga. I am either alive or dead, and I choose which. The device did not fire again.

Can I get someone behind me? I called out. I don't trust myself not to fall. Someone cupped my back immediately, supported me to the ground. And the sky came into view - a ring of faces, the sharp white field lights, the smell of burning, which was me.

DAVIES: Wow. And that is Katherine Standefer reading from her new book "Lightning Flowers." You know, when I first read this account, I wasn't sure if this device had fired accidentally or if it had saved your life. Did you know at the time? Were you sure?

STANDEFER: I did not know at the time. And a lot of the beginning of the book comes out of the moments after it shocked me and, really, wondering whether or not my life had been saved and what it meant to take this kind of electricity if it hadn't saved my life.

DAVIES: And it turns out it didn't save your life, right?

STANDEFER: It turns out it didn't. Yeah, when I went into the hospital the next day, the tech said that it was an error in my settings, that actually the device had gone off appropriately because a particular box was checked within my software (laughter) - cyborg problems.

DAVIES: So let's back up a little. Explain the heart condition that led to you getting this device implanted.

STANDEFER: The heart condition is called Long QT syndrome. It's a genetic arrhythmia in which the heart quivers instead of pumping blood. And so that can lead to there not being enough blood in vital organs, which causes someone to pass out. If they're lucky, they might wake back up; if they're not lucky, they could die of sudden cardiac death.

DAVIES: So this really has to do with the electrical impulses which cause our heart to beat in a proper rhythm. They're a little off due to this genetic condition?

STANDEFER: That's right. QT in the name Long QT syndrome refers to the repolarization interval of the heart. So if you think about the heart, it is a muscular organ that is run by current. And after each beat, the heart electrically resets for the next beat. That's known as the QT interval. And when the heart takes too long to electrically reset or not all parts of it reset at the same time, it can cause this sort of desynchronization that leads to that sort of quivering instead of pumping blood.

DAVIES: OK. And then how does the device remedy this?

STANDEFER: So when a heart is not pumping blood, one of the ways that you can reverse that arrhythmia is to shock it with electricity. And the electric shock actually flatlines the heart, which gives the heart the opportunity to settle back into its normal beat.

DAVIES: Kind of like rebooting your computer?

STANDEFER: Exactly like rebooting your computer.


DAVIES: Yeah. When did you first become aware of this?

STANDEFER: Well, my story follows my younger sister's story by about a year and a half. So in the fall of 2007, my younger sister was 18 and a freshman at University of Colorado in Boulder. And she took a strange fall out of bed one day, and she spent some time at the doctor's getting a head CT looking for epilepsy. They tested her low blood sugar. And no one could really figure out what was happening, and so it just sort of receded from view.

And then a few months later, right as she was about to begin finals in her first semester of college, she passed out several times in a row and ended up in the hospital, luckily with an electrophysiologist who noticed that she had Long QT syndrome. So about a year and a half after my younger sister was diagnosed with Long QT syndrome, I passed out in a parking lot one day in Jackson, Wyo., and that's when I woke up knowing that that's probably what I had.

DAVIES: Right. And, you know, after your sister's condition became clear and she had one of these implanted, your parents kept saying to you, look; you got to go get - you got to go to the hospital; you've got to get checked.

STANDEFER: (Laughter).

DAVIES: And being the post-college student, as we all might have been at one time, you said, yeah, yeah, I'll get to it. And you never did - until you had this dreadful episode.


DAVIES: And they told you what when you went to the hospital?

STANDEFER: Well, in the ER, I told the doctor right away that he should check my QT interval because some part of me knew. And I think it's fair to say that part of why I never made it in to get an EKG, which is the test that you can often tell whether or not someone has a Long QT interval on - I had never made it to the hospital to get an EKG, I think, because some part of me knew that I had it and - or that if anyone in the family had it, it would be me.

And for me to get diagnosed with Long QT syndrome would mean the end of the life that I was living at the time. I was 24 years old. I lived in Jackson, Wyo. I worked as a ski instructor and a climbing teacher and a hiking guide. And I was quite invested in not necessarily knowing if I had this heart condition because it was going to make my life, as I had known it, really impossible. So the day I showed up in the hospital, something in me already knew. But the ER doctor took the EKG. And he came back, and he said it does look like you have it.

DAVIES: So you learn at the age of - what? - 24 that you have this condition, right? Do I have this right?

STANDEFER: Just after my 24th birthday.

DAVIES: Right. And, you know, you live in Jackson, Wyo., and you love the outdoors. And you know your life is going to change.

There's another way in which you were ill-suited for this kind of thing, which is that, you know, this is going to be an expensive medical condition. And that didn't exactly fit with your income and insurance status, right?

STANDEFER: No. The first thing I thought when I passed out and my partner came to pick me up, he wanted to take me to the hospital. And I told him, you can't take me to the hospital. I don't have insurance, and I'll never be able to get insurance again. At the time, it was legal to deny care to people who had preexisting conditions, and so 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.

I had been working all of these jobs that didn't pay very well. Part of why I did that was because I wanted to be a writer. And if I worked outdoor jobs during the summer and winter, then I could take spring and fall to really work on my craft. But what that meant was that I was living in a very shaky financial situation where buying some of the very poor insurance plans that were available was just too expensive and didn't seem worth it because I was so young and so healthy.

DAVIES: Let me reintroduce you. We're going to take a break here. We're speaking with Katherine Standefer. Her memoir is called "Lightning Flowers." We will continue our conversation in just a moment. This is FRESH AIR.


DAVIES: This is FRESH AIR, and we're speaking with Katherine Standefer. She's a writer whose new memoir is about living with an implanted cardiac defibrillator in her chest. Her book is called "Lightning Flowers: My Journey To Uncover The Cost Of Saving A Life."

So you were living in Wyoming when you discovered that you have this condition and may need this really expensive treatment. How do you end up in Colorado?

STANDEFER: 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.

So 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.

DAVIES: You had to figure out a way to make this happen. You knew you needed it, and you knew you didn't have the money or insurance. Now - and at one point, you got some advice from one of the people in a doctor's office which essentially said, you know, if you come through the emergency room - right?

STANDEFER: (Laughter).

DAVIES: Were you being asked, in effect, to fake a heart attack?

STANDEFER: I was. I was advised to fake cardiac arrest. And I'm very grateful to that nurse on that particular day. 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 in to 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 she said, be careful, you know. Are you really sure you want to do this? And she said, you know, the place the hospital writes off the most bills is through the ER. And I didn't tell you this, but if you were to come in through the ER - 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.

And 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? What if my younger sister hadn't already been a patient of Dr. Oza's? 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.

DAVIES: Well, as it happened, you didn't have to fake a heart attack. Nature intervened. What happened?

STANDEFER: This was a very strange night. So my partner and I drove from Wyoming with a moving truck on October 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.

DAVIES: The perfect day to get into the ER.

STANDEFER: That's right. That's right. I entered the ER, 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 him to put it in.

DAVIES: So you get this thing implanted in your chest. Just talk a little bit about what did it feel like, this thing in your chest?

STANDEFER: 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.

DAVIES: Did it change your posture? Do you feel like it kind of permanently altered what your body felt like?

STANDEFER: Yes, absolutely. 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 - the left side - protectively for the device, and it changed the architecture of my body forever.

DAVIES: In this book, you weave in the story of your relationship with Sam (ph), the man that you were with, when, you know, when the - when you first discovered the condition, who loved you, but he also loved this life of outdoor activity, particularly rock climbing. You eventually broke up. And it's - this is painful. It is well written. And I'm wondering how you then looked at, you know, future relationships, dating, knowing that you had this thing that whoever was going to be with you had to kind of understand and cope with.

STANDEFER: 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 1/2 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.

DAVIES: You decided at one point that you must keep in your life only men who are good in the hospital.

STANDEFER: (Laughter) That's right.

GROSS: We're listening to the interview FRESH AIR's Dave Davies recorded with Katherine Standefer, author of the new memoir "Lightning Flowers." They'll talk more after a break. Also, jazz critic Kevin Whitehead will review a new album from Susan Alcorn, a pedal steel guitarist who used to play in country and Western bar bands but has found a new role for her instrument. And Maureen Corrigan will review a true crime story about the murder of a Harvard graduate student. I'm Terry Gross, and this is FRESH AIR.


GROSS: This is FRESH AIR. I'm Terry Gross. Let's get back to the interview Dave Davies recorded with writer Katherine Standefer. Her new memoir is about living with an implanted cardiac defibrillator in her chest. It's also about her struggles to pay for medical care with little income and her exploration of the human cost of producing such exotic medical devices. The book is called "Lightning Flowers: My Journey To Uncover The Cost Of Saving A Life."

DAVIES: One of the kind of fascinating moments in this book is when you describe you're on an airplane flying to Bogota. You got a cheap fare, and you're going to go hiking with a friend. And there's this buzzing. You think, is that in the airplane? And it turns out it is in your chest. What's going on?

STANDEFER: Yeah, the way the device lets you know that it has low battery is that it starts vibrating inside you. It's very strange. Each vibration lasts about 10 seconds, and it happens three times, and then it takes a break for about 12 hours, and then it happens again, and then it takes a break, and then it happens again. And so over the course of the next day, I experienced several rounds of this vibration inside my body. I mean, it feels exactly like what you might imagine a cellphone going off inside your breast would feel like.

And on the airplane, I had no idea what was going on. And when I figured it out, it was this slow dawning of, like, oh, wow, because I had assumed that my health story was over in some way. All of a sudden, I understood that this was a warning shot, that by having to decide whether or not I was going to re-implant this device and then going through that surgery, I was really reopening to things going wrong.

DAVIES: And this is a fascinating part of the book, and it's a little too complicated to relate all on here. But you had three months to get the battery replaced. You end up getting a new one in and discover that there's a problem in your chest. You want to just explain this? It's not quite as simple as, we take out the old one and put in the new one. What did you discover?

STANDEFER: So when I woke up from the reimplantation, which essentially is a procedure where they open the same scar, they take out the old device, and then, ideally, they just plug a new device into the same wire that is already screwed into the heart - instead, I woke up and was told that at the end of the surgery, they had tried to do a test they always do where they actually induce an arrhythmia and wait to see if the device will correct it. It's part of how they know that the system they've just implanted is working appropriately. And instead, it didn't work. The device didn't go off.

And they rolled me over to an X-ray machine, and they figured out that the wire had actually gotten crushed at some point between my clavicle and first rib. It had slotted in there, and it had gotten cracked. We didn't know at what point this happened. It's possible that it had happened a long time ago and the scar tissue that had developed around the wire had simply held it in place so that when I got the device tested, it tested normally. But once they unplugged the old device and plugged in a new device, the wire must have gotten shifted enough that the insulation that had cracked shifted and electricity no longer conducted normally.

So when I woke up, what I learned was not only was my wire broken, but I also had a device that perhaps had fired on itself. It had certainly generated the electricity to reverse the arrhythmia. But then where that electricity went was sort of unclear. And so I woke up with a broken device inside me.

DAVIES: Right. And a wire that's very problematic. I mean, you end up - they try and extract the wire and can't do it. So the wire's just hanging there in your heart - right? - like a - I don't know - clothes hanger at the bottom of your closet, except it's your heart.

STANDEFER: Yeah, they tried to remove the wire, and it actually snapped off.

DAVIES: You knew of a terrific cardiologist at the Mayo Clinic. And you decide, I want these folks to figure out what we're going to do here. The problem is you had a plan from the Affordable Care Act - right? - by then, and it's the only plan available, and that would require preapproval to travel out of state. And, you know, anybody who's dealt with an insurance company has had some frustrating moments. If you can, just give us a sense of what it was like to try and get your insurance ducks in a row so that you could go and get this critically needed testing and treatment.

STANDEFER: Yeah, it became clear very early that having a snapped-off wire stuck in my heart that had already had one attempted removal fail was something that required a practitioner beyond what was available in my network.

I think what people don't understand about the American health care system is that access is only the first step. Having access to an insurance plan is really the bare minimum we can ask for. In a situation like mine, receiving appropriate care, receiving the care that enabled us to actually manage what was going on in my heart ended up requiring just hundreds and hundreds of hours of labor from me as a person who was terrified of what was going on in her body.

And so, I mean, it's not an exaggeration to say that the months I spent trying to pre-authorize an appointment at Mayo ruined my life. I spent my time doing nothing else. My ability to do paid work deteriorated. My ability to maintain relationships deteriorated. I spent all of my time working on insurance paperwork that, ultimately, I had no control over. I couldn't force offices to talk to one another.

DAVIES: So when you finally get to the Mayo Clinic, you meet with Dr. Ackerman (ph) and his team, and they do seem like the really experienced, empathetic cardiologists you had hoped for. They listened carefully, and you discovered maybe you don't need, actually, the device in your chest. So there's a question, do you want to get another one implanted? And it turns out it's not one wire, but a tangle of wires in your heart now. Should you try and extract those? Book doesn't quite tell us what you did. Do you want to share this with us?

STANDEFER: There is really another book to be written about the things that happen after I have this first Mayo Clinic visit. The short version is that I never made it back to Mayo Clinic to continue care. And so as of now, I don't officially know whether or not I ever needed an ICD. I continue to suspect that I did not. And one of the things that was so extraordinary about Dr. Ackerman and his team is that he's not wedded to the technology. He's wedded to the patients. And the Mayo Clinic implants ICDs at a remarkably low rate, in part because they are the research team, in many cases, driving what we know around how else to manage Long QT syndrome. On the other hand, while I was at Mayo Clinic, yes, a 3D X-ray revealed that when we previously tried to remove the fractured wire, the tugging had perhaps stripped the polyurethane insulation, like tugged it up. And so the wire that that insulation used to hold together had spidered into a nest. And that meant that a procedure to remove the wire was really unlikely to be successful unless it was done as an open chest procedure.

So I understood when I left Mayo Clinic that at some point in the future I would need to have open heart surgery to remove this wire. The question of when is really an open one. And so I still have this tangle of wire in my heart, ideally that I would be checking on every six months to a year or so. That's not actually the case right now. I don't actually even have a cardiologist, in part because my experience within the American health care system has been so disempowering and it feels like my health is better the more I can stay out of doctors offices. So for now, it's just in there.

DAVIES: Oh, wow. That's just dispiriting to hear. Your writing is getting a lot of recognition. I think this book is very well received. Apart from the wire in your heart, how are you? How's your life?

STANDEFER: You know, my life is rather amazing right now. I just moved in February to New Mexico, where I have some chickens and I live on a beautiful mesa, and it's been a very safe place to hide out from COVID. So I feel incredibly fortunate. One of the greatest gifts is to feel alive while you are alive. And 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.

DAVIES: Well, Katherine Standefer, I wish you good luck and good health and success in your writing. Thanks so much for sharing your story with us.

STANDEFER: Thank you.

GROSS: Katherine Standefer spoke with FRESH AIR's Dave Davies. Her new memoir is titled "Lightning Flowers: My Journey To Uncover The Cost Of Saving A Life." Coming up, jazz critic Kevin Whitehead reviews a new album from Susan Alcorn, a pedal steel guitarist who used to play in country and Western bar bands. This is FRESH AIR.


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