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Episode 63: Living with Long QT

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Katherine Standefer discusses her book Lightning flower and living with the genetic heart condition that lead to the books conception.


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The content of this podcast has not been evaluated by Health Canada or the FDA. It is educational in nature and should not be taken as medical advice. Always consult a qualified medical professional to see if a diet, lifestyle change, or supplement is right for you. Any supplements mentioned are not intended to diagnose, treat, cure, or prevent any disease. Please note that the opinions of the guests or hosts are their own and may not reflect those of Advanced Orthomolecular Research, Inc.

 

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Welcome to Supplementing Health, a podcast presented by Advanced Orthomolecular Research. We are all about applying evidence based and effective dietary lifestyle and natural health product strategies for your optimal health. In each episode, we will feature very engaging clinicians and experts from the world of functional and naturopathic medicine to help achieve our mission to empower people to lead their best lives naturally.

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[01:48] Cassy Price: Hello and thank you for tuning into this week’s episode of Supplementing Health. Long QT syndrome is a condition in which repolarisation of the heart after a heartbeat is affected. It results in an increased risk of irregular heartbeat which can result in fainting, drowning, seizures or sudden death. Katherine Standefer is the author of Lightning Flower: My Journey to Uncover the Cost of Saving a Life and has Long QT syndrome herself. She is here today to share her experience and expertise on the condition. Welcome Katherine. Thanks for joining me today.

[02:22] Katherine Standefer: Thank you so much for having me.

[02:23] Cassy Price: So, I am actually on chapter ten of your book right now. I was hoping to finish it before our conversation, but life has unfortunately gotten in the way there. In there I think you do a really great job of explaining how the heart is supposed to work and the way that it is altered when you have Long QT syndrome. Would you mind sharing that for our listeners?

[02:41] Katherine Standefer: Sure. Part of the fun of being both a writer and someone with a very technical heart condition is that I have had to spend a lot of time trying to make something that is very technical understandable to lay people. Long QT syndrome is a heart condition in which the heart can end up quivering instead of pumping blood. Essentially our heart is normally engaging in a synchronized pumping action that is occurring because of electrical currents that tell certain parts of the heart when it is time to do certain things. Normally that synchronized electrical current results in a synchronized pumping that gets blood into the lungs to become oxygenated and then sends that oxygenated blood out into the body at the kind of rate that allows our organs to do what they need to do so we remain conscious, we remain able to move, all of our organs can do whatever our bodies need them to.

[03:50] With Long QT syndrome, there is a particular part of the heartbeat that becomes longer than normal, as you might have mentioned from the name. So, the Q in the role of the heartbeat refers to the repolarisation interval. Every time the heartbeats it is sending that electrical signal to different parts of the heart to muscularly contract and when that signal gets a little bit unsynchronized, or it takes too long sometimes, parts of the heart are ready to fire and other parts of the heart haven’t got the memo yet. So, what ends up happening is a loss of that synchronization. The heart is pumping but it is not pumping in the neat sequence that really powerfully sends oxygenated blood around the body. So, with that quivering instead of pumping, parts of our body may not get oxygen and that is going to look like passing out for some people. Maybe they are lucky, and the lack of oxygenation doesn’t last that long so they don’t actually go into cardiac arrest but often folks who die of sudden cardiac death are dying of cardiac arrest from that blood not getting out appropriately.

[05:14] So, Long QT syndrome is fundamentally a problem with this repolarisation interval and Long QT is a little tricky in that it is not that having Long QT syndrome you suddenly have a repolarisation interval that just takes the same amount of time even though its long, it is always changing and responding to things in the exterior environment or what you are choosing to do with your body. So, the type of Long QT syndrome that my younger sister and I have is known as type 2 and it is specifically related to the potassium channel in the heart. That type of long QT tends to get exacerbated by emotional intensity or being startled. Often it is related to epinephrine or adrenaline in the body. For us it is not that it is necessarily dangerous to go for a run. It is more dangerous to go for a run and be startled by a bear. My younger sister started going into cardiac arrest when her roommates alarm clock would go off and other people have had trouble when a car horn honks at them. In my story I pass out in a parking lot at age twenty-four because my cell phone goes off. These are not necessarily external triggers that you can entirely prevent although definitely there are things that we can do that affect when Long QT shows up in the body.

[06:51] Cassy Price: Those are all such everyday things. Things that we totally take for granted, maybe not being startled by a bear in the woods for everyone but a cell phone going off or a siren outside, those sorts of things are things that we totally take for granted and in a lot of ways bring a lot of positivity into our lives but obviously not when you have a condition like your own.

[07:13] Katherine Standefer: That’s exactly right. There was a funny moment when I was first diagnosed when an ambulance passed me, and I was like “how ridiculous is it that the sound of the ambulance could be the thing that makes me need an ambulance?” I mean it just really underlines in a disturbing way the sort of chaos that exists in all of our human lives that I think we don’t always have to think about or attend to. Normally we get to proceed through our day as though we are safe, and we put on the seatbelt or are careful not to take too many Ibuprofen or whatever it is that we think we are making decisions that improve our safety but there is a way that some of these conditions remind you that we are not in control of all factors.

[08:04] Cassy Price: Absolutely. So, you and your sister both have the condition and I know your sister was diagnosed quite young. Was it at age twenty-four that you got your diagnosis or was it prior to that?

[08:16] Katherine Standefer: It was at age twenty-four. My sister was eighteen and a freshman at the University of Colorado at Boulder when she began going into cardiac arrest in her dorm room. We did not know why she was passing out. Of course, you might imagine with college freshman, my parents first response was a little closer to “were you drunk?” As time went on and it happened a few more times, she did have some tests around is it a seizure or what’s happening and she ended up getting, I suppose you could say, lucky, but the whole situation is obviously not lucky. She was in a health clinic because of some flu like symptoms which often can be related to heart health difficulties in women and she had an event actually at the school health clinic and they were able to transfer her to the hospital and in the hospital is where she was actually hooked up on a machine when she had another event and that allowed the rhythm to be captured and a nurse on staff to say “oh, this looks like we may need to have a cardiologist look at it.” So, my younger sister had her first implanted cardiac defibrillator placed in December of that year, so at the end of her semester of college, that was in 2007. I lived in Wyoming at the time, about five hundred miles away. We weren’t super close.

[09:44] I didn’t go home for Christmas that year because I was working as a ski instructor and so I really only saw her maybe once in a year and a half, maybe twice, but she also being so young and having the personality that she has she wasn’t sharing a lot about her experience. To me it very much felt like “okay, my sister got diagnosed with this thing and it is solved because she has an ICD.” I knew my parents really wanted me to go in and have an electrocardiogram done to look at my own heartbeat. That was something that they were doing in Illinois where I grew up, but I was uninsured and as a twenty-two- and twenty-three-year-old, at the time of my sister’s events, I was uninsured and working as a ski instructor and climbing guide and really not feeling like it made sense to walk into a hospital and say “hi, can I pay out of pocket for an electrocardiogram?” I think like so many young people I was steeped in the myth of my own immortality or invincibility and was super healthy so I didn’t ever have an ECG and then on June 19th 2009 I had just gotten back from a hike and I went to band practice and as my guitarist and I were getting going, a phone call came in that a really needed to take so I grabbed my phone and I ran outside and that is when I passed out. So, we will never know if it was an official cardiac arrest or the term in medicine is syncope. Just passing out from that momentary loss of oxygenation. When I woke up, I knew pretty much right away that I must have the same thing as my younger sister.

[11:36] Cassy Price: It is a genetic condition, right? That is why your family all got tested once your sister found out?

[11:42] Katherine Standefer: That’s right. It is a genetic condition. There is a form of Long QT syndrome that is caused often by medications so any normal person can take certain medications that might elongate the QT of their hearts and so sometimes especially with older adults who are on a lot of medications you will see people who have Long QT syndrome or need to make decisions about their life as though they have Long QT syndrome but it is not the genetic version, it is from the medications. For those of us who have this genetic version, there is a number of them and they operate slightly different ways and have different triggers: Long QT type 1 tends to have a little bit more impact form physical activity and type 3 tends to have a little bit more impact on sleep. People will have events while they are sleeping. It doesn’t mean that my sister or I couldn’t have an event while we are sleeping but when you run the data, the different mutations that genetic cardiologists have found sync up with these patterns of when that Long QT begins getting long and then what types of events actually happen. Just because QT interval is getting long doesn’t mean that someone is automatically going into cardiac arrest and that is part of what is hard to predict about it. Basically, there is just an increased likelihood that the heart could begin quivering instead of pumping blood when that interval starts getting long. That would get triggered by these external stimuli that we are talking about.

[13:22] Cassy Price: Okay, so you yourself were a pretty active person, like you were saying you were a ski instructor and you loved spending time in the mountains and camping and very much an outdoor active person, so, how did you cope with adjusting your lifestyle once you found out you had this condition?

[13:45] Katherine Standefer: Honestly, I was devastated. I think it is a part of why I didn’t go in for testing sooner. I think I understood that if I did have this condition, my life as I knew it would be over. One thing I should say is that my sister and I’s initial treatments took place in 2007 and 2009 and what we know about Long QT syndrome and how it gets treated is quite different now from what it was when we were diagnosed and for the better. Essentially there are a lot more tools in the toolbox to assess what the actual level of risk for any individual might be and also to understand different types of treatments and how they might be selected over one another to allow someone to still keep living the life that they love. The point of treating something like Long QT syndrome is to not die and in good medicine I think we always have an eye on this question of how can patients be supported to still live a life to feel like they are living? When I passed out in that parking lot and was literally earning my living through my body and in particular with high-risk activities that involve a lot of adrenaline and being in the back country meaning if I were skiing in a shoot in the back country and I don’t know something startled me or something about the skiing triggered Long QT syndrome and I passed out and went into cardiac arrest it would be very hard for me to be taken into medical care. The little hospital in Jackson Hole did not even have a cardiac unit or a cardiologist who worked there all the time.

[15:35] They had an ER and a cardiologist who travelled to town once every month to six weeks circulating old time situation. It was just a really bad scenario. I understood that the life I had been living was probably not the life I could keep living. Even if I felt comfortable, my employers might not want to have somebody who had this kind of risk. I was responsible for other clients and really needed to find my own body reliable. I had a very confusing first summer with Long QT syndrome because when I was diagnosed the cardiologist said, I asked him straight up “we’ve been very freaked out and I wanted to clarify with you what exactly do we need to be afraid of? What types of activities?” He said, “basically everything.” Which now knowing so much about Long QT syndrome was a terrible answer. He told me I should probably never swim again. He told me light tennis and golf might be nice. He was not noticing my stage of life or my career or the actual questions that I was carrying. One of the main treatments for Long QT syndrome is beta blocker medication that holds the heart rate artificially low and by holding the heart rate low you prevent a lot of the opportunities for that very dangerous arrhythmia to develop. So, beta blockers were effective at keeping me safe, but beta blockers are vasal dilators, they keep your blood pressure really low and I already being as fit as I was had a very low blood pressure. It really dropped my blood pressure almost to unmanageable levels. Every time I stood up, I was spinning. I was really unable to go about my normal daily activities. I couldn’t ride my bike downtown. I couldn’t be sexually active with my partner.

[17:48] So, I lived in this weird space of “I don’t want to give up these things I love and these things I love are how I manage hard experiences in life.” To not be able to go out for a run, to not be able to spend time in the wild, to not be able to be alone. I am an introvert. I like spending time alone and I thought I might die if I spend time alone. Then to go for a hike and take that risk and feel myself lightheaded and feel a little dizzy and have to sit down but not know whether that was the heart condition itself or the beta blocker medication. I can’t underscore enough that the experience that someone has of something genetic like Long QT syndrome is going to have everything to do with what kind of treatment that they are given. That means the treatment, not only in terms of which drug and in what amount and introduced in what way but also the types of support that their cardiologist is able to give them and the way that their life is actually taken into account as part of that treatment and their questions are answered in ways that allow for a feeling of some safety.

[19:01] Cassy Price: Have you found the developments of the genetic sphere that have been happening over the last five years or so have really impacted the knowledge around your condition in particular?

[19:11] Katherine Standefer: Absolutely. So, one of the things that is most exciting to watch is the way that there is currently a genetic test that you can get that tells you “okay you do have a mutation in this area. It is type 2” but I think what geneticists have been learning is just because you have a particular mutation or you have a gene doesn’t mean it will express itself. It doesn’t tell us how it will express itself. Long QT syndrome is fascinating in that people in the same family have the same gene and the way they end up living out the story of that gene is so different. Some people it never expresses itself. There are a lot of factors at play there. Androgen is a protective factor. In my family there was a great great grandmother in 1899 named Lena Proctor, she was in Hamilton Texas and she died at age twenty right after giving birth to my great grandfather and we think that she had Long QT syndrome. Her death mirrored what you would expect to see from a Long QT patient. Early onset death, unexplained. There was sense that she had a ‘heart attack’ which back then medicine had not yet distinguished between heart attacks and cardiac arrest. Long QT syndrome you can be highly at-risk during pregnancy or post-partum. We traced this back to Lena Proctor and suspect that she is part of our story. She gave birth to one son, my great grandfather also had one son and my grandfather had four sons, one of whom is my father and among those four boys we now know that my father carries this gene and one uncle also carries the gene.

[21:04] They never had any trouble and it never expressed itself. The question as to why that would be is part of what medicine can start teasing out for us through research. Even between my sister and I, her Long QT syndrome was much more active. She has actually had her life saved by her implanted cardiac defibrillator whereas mine, I no longer take beta blocker medication and my device has never gone off. One of the cool things about having that device in my body is that it is always watching my heartbeat so if any arrhythmias did occur it would be recording them so we would know how often that was occurring and when It was occurring. It is not occurring. So, the question of why did I pass out in a parking lot that day in 2009 when I now am living a life where that arrhythmia is just not showing up? Is that due to lifestyle factors? Is that due to other mitigating genes that I have? Is it just that at that time I passed out I had a particular type of overwhelming stress that tipped something over the edge? Genetic research is able to start not just looking at the presence of one gene but how that gene relates to other features of someone’s makeup and there is also a lot of research coming out that differentiates the different beta blockers and some non-beta blocker drugs that I am not as familiar with, truth be told, that are starting to be useful in the treatment. Then there is a lot more knowledge around sympathetic denervation. This idea that you can do a small denervation procedure inside the heart that certainly carries its own risk but might remove enough of the risk of Long QT overall that then someone that is having trouble with medications say could live their life without medications or without a defibrillator. So, if we are going to personalize the way we treat Long QT syndrome to really allow individuals to lead their best lives possible within their set of circumstances dialling in all of those different factors and having all of that information is just so essential.

[23:30] Cassy Price: It is really fascinating how much science can advance in such a short time really and all of the differences that it can make. I was curious, beyond pharmaceutical interventions and medical device interventions are there lifestyle things that you can do to support your condition? For example, we know that magnesium is essential to proper muscle function, the heart is obviously a muscle within the body so if you are ensuring that you get enough magnesium and essential nutrients like that can that help to mitigate your risk as well?

[24:02] Katherine Standefer: Yes. Absolutely. This is one of those things that I should add a little caveat that it is possible that the research has shifted even since I was last digging around in it. For type 2 in particular it is suggested that we take potassium supplements and generally remaining really well hydrated and really paying attention to electrolytes like not giving the heart any extra imbalance that might tip an already long QT over the edge. Obviously, I was already talking about the drugs that can elongate the QT Interval further and it is very important that Long QT patients pay attention to what drugs are on that list and really make careful choices about when to employ them. It is a huge list. There is a whole app called Credible Meds that the Long QT community has developed that I am so grateful for because then whenever any new research comes out it gets updated in the app. So, if you are in an office with a different medical practitioner and they are trying to prescribe you something you can be the one who looks it up right then and right there. Some of the examples of drugs that I have not been able to take because they would increase my risk profile too much are ADHD medications which I would really love to use as a writer I am not going to lie, things like Ritalin and Adderall are too dangerous for Long QT type 2. Also, when I travel to the African continent, I do not take anti-malarials. My doctors have specified that were I to go get malaria it would then be worth the risk of employing an antimalarial in the treatment like Quinine but upfront it is not worth the risk of walking around with an elongated QT for however many weeks I am travelling.

[26:05] So, the lifestyle choices there are things like you could not travel to Africa but as readers will know this book takes places partially on the African continent so that was pretty important to me. Are you using your mosquito nets when you are traveling there? Are you carrying rain pants and a raincoat so that in jungle areas you have an impenetrable layer around you? Do you have high quality anti mosquito sprays and that kind of stuff? In sort of an everyday life sense, one of the factors that researchers have really been trying to figure out is how exercise maps onto these different types. Obviously exercise if a very important for heart health overall and it used to be that if you got a Long QT diagnosis especially as a kid you would be yanked off all of your sports teams. I think what we are learning is that it is not that simple. There may be ways again with watching the medications to avoid, you can’t take normal things like a lot of cold medicines, you just have to be aware, perhaps supporting schools in having external defibrillators hanging by every field or available at every event. There are certain types of exercise that can be, especially for type 2 like myself, a little bit more dangerous, sprinting is obviously about a burst of adrenaline verses the long distance more plodding running. So, doing sprinting events of a swim team is going to be really different from signing up for a really long relay race.

[27:53]  So, there are some slight choices like that that people can choose to make. Beyond that my doctors and I have had very frank conversations about ways of supporting the parasympathetic nervous system so the part of our nervous system that down regulates threat or stress, like how do we improve the body’s ability to bounce back from the types of ongoing strain that keep the QT long. There is just not that many of us that have Long QT syndrome and who perhaps are doing yoga specifically or using acupuncture weekly for those long-term studies to have been done. I will say that I notice an extraordinary difference in how much palpitating I feel from my heart when I am doing a lot of parasympathetic nervous system strengthens so Chi Kong body work. There is just a lot of ways to support a body in regulating itself. That is not to say that by doing yoga or doing acupuncture you are not going to have a dangerous arrhythmia from your Long QT. That is the level where we don’t know how the pieces add up, but we do know that all of these pieces are worth thinking about as a combined risk management system.

[29:26] Cassy Price: That is awesome that there is lots of different options and pieces that you can put together to create your own picture based on where you at in your life and that condition and that sort of thing. Now I was curious if you found writing your book therapeutic in your process of dealing with your diagnosis and coming to terms with it and learning about it?

[29:49] Katherine Standefer: Yeah. You know I had a really interesting moment right when the book came out. A reporter from the Jackson Hole News and Guide in advance of one of my events, she clearly hadn’t read the book and she said, “what was your favourite part of writing the book?” I had this huge pause because I was like “wow, favourite part” this was a really hard book to write. I found myself just standing there just thinking “I’m not too sure this was fun.” So, the connotations of the word therapeutic, ultimately the outcome is good, a kind of soothing and a moving from one place to another. Things that are therapeutic are supportive and helpful to us but anyone who has really been in a deep therapy process knows that that is ugly dark and hard work, and this book was very much a process that required that I show up to my own spiritual growth. I certainly carried a lot of trauma from the events of book which include not only passing out in that parking lot at twenty-four but when that happened I was uninsured and thought I was going to die every day for five months when I tried to figure out how to get the device. Then I had the surgery and had to recover from that surgery which as a young person I think had more impact on me than I knew. The book also talks about going septic about six months after so having a bacterial blood infection that was really becoming dangerous, I was at risk of having some organs shut down and I had a blood clot in my lung.

[31:38] Later in the story I take some accidental shocks to the heart and then kind of near the end of the book I learn that one of my wires is broken and in the process of trying to remove that wire it snaps off and becomes something that is currently living in my body that I can’t remove today and just have to be on notice that there will come a day that probably will be urgent to remove it. So, there are a lot of surgeries. There are a lot of life transitions. There are a lot of what it means to be young and be aware of death in that way and have it affect your relationships and working within the American medical system was extremely traumatic and having to face that and tell that story. So, I like to say that I basically did trauma writing for two years straight and every story that was in my body that I was carrying around, the way we do when things have happened to us, I had to move it back out and run it through me in order to get it on the page. You can’t rush that. It really requires the skills of sitting deeply with what that experience was and feeling everything that needs to be felt. It wasn’t even so much like cognitive behavioural talk therapy to make that happen although that was certainly important in places it was this experience of in order to write about my traumatic surgery, I had to bring up a YouTube video of some of the things that happened in that surgery so I could describe them appropriately.

[33:20] To watch something like that when you have been traumatised by it is really difficult so I would press play and watch for a few seconds and as soon as I had this overwhelming experience in my body I would press pause and I would have to just be with whatever was there breathing deeply into it, sometimes screaming, sometimes twitching, sometimes deep breathing and big naps and walking around. How does this thing need to move through me and what do I have to do in order to let it do so? It was a very slow hard process, but I can tell you that last summer when I finally turned in my copy edits to the publisher within weeks my body started changing. It was like a literal weight that I had been carrying. It started falling off me and my whole face looked different. It was as though my eyes became alive again. So, yes, I do think it was a therapeutic process but I don’t ever want to undersell what that asked of me. It is something that I carry as knowledge when I talk to other people who have Long Qt syndrome who have implanted cardiac defibrillators who have been through surgeries, especially as young people, that there may be a lot of things that they are carrying unprocessed in their bodies that affect their experience of the world all of the time in ways that they are not even aware of. I have so much deep empathy for all of us living in a world where we move so fast that we don’t always have time to sit and be with our conditions and really give them processing space.

[35:15] Cassy Price: Well I will say I find your writing hauntingly beautiful and that I think you convey your emotion and what you are going through in a way that your reader can absorb and empathize with even if that haven’t gone through it and I think you do a great job of marrying your own personal journey and experience with the technical knowledge someone needs to be able to understand what it is that you have gone through and what others who have the condition also may have experienced. That is just my personal take on your book, but I do think it is beautiful in a challenging way.

[35:59] Katherine Standefer: Well, I learned very early that you can’t keep a reader’s attention through so much trauma unless it is beautiful and also I can’t live through it unless it is beautiful in some way. So, beauty is very strategic and essential to existing within that kind of story line.

[36:22] Cassy Price: Now the other overarching question that you explored in your book is what if a lifesaving medical device causes loss of life along its supply chain which I think is a really interesting and altruistic outlook for someone who is already grappling with her own mortality and dealing with her own complete overhaul of her life. Can you share a bit about your process of exploring this and what make you even start to go down that road?

[36:53] Katherine Standefer: Yeah. So, that part of the book really felt like something I didn’t choose so much as was drafted into or it landed in me. So, the book opens as you know with a prologue in which I am playing intermural soccer at grad school. It is an evening game. Some guy on the other team has fallen and he is getting up, so the game has stopped and all of a sudden, I feel like my spine has been kicked in. It takes me a moment to realize that I am being shocked by my defibrillator while awake and of course as I said earlier that defibrillator was implanted because it has the power to reverse life threatening arrhythmias that would normally cause me to go into cardiac arrest or die. But when that happens normally you are not conscious, you have already passed out and then the defibrillator acts like the paddles in the ER and delivers a shock of electricity that allows the heartbeat to flatline and then re-establish itself more normally. That wasn’t happening. I was awake. It was very unnerving. I took one shock 850 volts and then I took another and then by the third one I was like “oh my god, is this going to stop?” Luckily, I started deep breathing and that took my heart rate which had been high from the soccer game below a certain threshold, and it did stop shocking me. As I was lying on the soccer field after taking those shocks, honestly smelling my own burned tissues I just kept finding myself thinking “if that saved my life, was it worth it?”

[38:49] I found myself thinking specifically of conflict mineral scenarios in the Democratic Republic of Congo which I must have heard about earlier that year for it to be floating around in my brain waiting to land. In that conflict mineral scenario, the electronics boom in the U.S had made it very lucrative for armed groups in Central Africa to take over these mines and force people to work and keep women as sex slaves, use the weapons that they were able to buy with the proceeds to terrorise nearby villages. Congo was known as the rape capital of the world during that era of 2012, when I was shocked and conflict minerals in Congo were at crisis level. This landed in my body and it was so weird. I can’t even tell you. I was certainly the kind of person who would have such a thought. I already was such a person who tried to buy my clothes from used sources or environmentally friendly sources, and I shopped at the farmers market, so I was thinking about supply chains but the way it landed in me just felt like something that I was being tasked to follow. When I look back at it now you can see even in early parts of my story there is a period when I am staying at this hotel in Boulder Colorado. I have just quite my life in Wyoming and moved to Colorado to try to get this heart surgery by becoming a Colorado resident and I almost kill myself in that hotel room.

[40:24] There is a real question that I was living without totally being able to identify it around what a human life is worth. Why would mine be saved? Why would mine not be saved? Why would I want to live if I know I can die, and we can all die at any moment? There was just a lot packed in there that it took me years to untangle. I feel very grateful to have had that seed planted in me in 2012 because on the one hand these are unanswerable questions. They are deeply human enormous questions that can never quite be cracked. I think I am in a process of learning that I deserve to be alive. That those resources are not wasted on me and at the same time we do have a blind privilege in the west and in America in particular in which we think that just because something is deemed a lifesaving treatment doesn’t mean it doesn’t carry extraordinary costs. Part of what my book is about is that I may never have needed my defibrillator in the first place, my Long QT may be totally treatable without it and so those resources would then be ‘wasted’ on me in some sense. So, this question of remembering that we are hooked to other ecosystems on the other side of the world. We are hooked to other human and plant communities that we actually need, especially the plant communities, we need those ecosystems that are doing work for our planet that benefits all of us. It is not without cost to save a life through a high and technological intervention and I just really needed to do that math.

[42:23] What I can say again is that the answer really doesn’t exist and there are a lot of small things we can do which I point out in the epilogue of the book around tightening up our supply chains and as American’s starting to engage with the way our relationships to death often means haemorrhaging every resource that we can get our hands on were having a different relationship to death. There may actually be treatments that are just as good or it may actually be time to no longer treat certain conditions, we may be at a certain point of our life where that is right and good where those resources would not be so blindly employed. So, it is a really complicated question, and I am glad you spoke to it.

[43:12] Cassy Price: Well, I want to thank you so much for joining me today. This has been a really fascinating conversation. I am so excited to finish the rest of your book. I have been hanging on every word so far and I really appreciate that you took the time to chat with me and explore from your own point of view this condition and all that comes with it for people. For the listeners, if you would like to learn more about Katherine’s book you can find information on her website at katherinestandefer.com. Thank you so much for joining me today Katherine.

[43:42] Katherine Standefer: Thank you so much for having me on and making this available to folks who might be living with Long QT syndrome or might be curious about it or knowing someone who has it.

   

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