Introduction to Critical Matters Podcast
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Welcome to Critical Matters, a sound podcast covering a broad range of topics related to the practice of intensive care medicine.
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Sound provides comprehensive critical care programs to hospitals across the country.
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To learn more about our programs and career opportunities, visit www.soundphysicians.com.
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And now, your host, Dr. Sergio Zanotti.
Emergency Response: 911 Call and CPR
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For an unconscious patient, ma'am, go ahead.
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Hi, person won't wake up.
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He's making weird noises.
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Okay, is his breathing normal?
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No, he stopped breathing for a little while, and then he started again, and he's making weird, odd noises.
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Okay, how old is he?
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And he's unconscious?
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Yeah, he won't wake up.
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Okay, I'm going to walk you through CPR instructions, okay?
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The heel of your hand on the center of his chest, right between his nipples, and put your other hand on top of that hand, and you're going to push down hard and fast at least two inches deep, allowing his chest to rise.
Family Experiences in Critical Care
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In today's episode of the podcast, we will focus on the forgotten patient, the loved ones and families of critically ill patients.
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We will explore the topic through the lens of a cardiac arrest co-survivor.
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Our guest is Kristen Flannery, a cognitive neuroscientist and social psychologist.
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Kristen is a co-survivor of cancer twice and a co-survivor of sudden cardiac arrest.
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She is the voice you heard on the 911 call performing life-saving CPR on her husband, Dr. Will Flannery.
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She's also known for her social media alter ego, Lady Glockenflecken.
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In 2022, Kristen co-founded Glockenflecken LLC, where she works to advocate for caregivers and co-survivors of medical trauma and critical illness, community CPR and AED use, and sudden cardiac arrest survivorship.
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She has written about her experience as a co-survivor in medical journals and has received an EMS cardiac arrest safe challenge coin, the Citizen CPR Foundation's 40 Under 40 Award, and the American Heart Association's Resuscitation Champion Award.
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We are delighted and truly honored to have her as a guest today.
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Kristen, welcome to Critical Matters.
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Thanks for having me.
Turning Pain into Advocacy
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So I think this is a topic that you have brought to my attention at a recent critical care conference and really talking about what it means to be part of a critical illness of a loved one and being a co-survivor of cardiac arrest and in your case also of cancer.
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And to some extent, it's a...
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For you as a personal story, I think it's a story of not necessarily what we would call post-traumatic stress, although there was a lot of that, but really post-traumatic growth because you really have taken that pain and channeled it into something positive.
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but really trying to advocate for families as yourself and really pointing to the medical community a big hole in our care that we are really forgetting about a very important part of the equation, which is the spouses, the kids, the parents of our critically ill patients.
Kristen and Will's Educational Journey
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And that's what I wanted to talk about today.
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So maybe we can start with a little bit of your personal history.
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And maybe we can start how you and Will met, I guess, at Texas Tech and what happened after that as you transitioned through his training and your training and how you unexpectedly at a very young age became a co-patient.
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Yeah, so we met in college at Texas Tech University in Lubbock, Texas.
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We were both part of the Honors College and we met in the Honors dorm where, you know, we had some mutual friends and that's where everybody would kind of hang out.
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And so it's a very nerdy meet cute, I guess, but yeah.
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We got to know each other and, you know, had a lot of similar values and sense of humor and ambitions.
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And so it just felt like a really comfortable, good match.
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So we met, I think the, let's see, it was the junior year.
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So we had a couple of years in college.
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And then, you know, our senior year, of course, it was time to figure out what was going to happen afterward.
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Um, and he wanted to go to medical school and I wanted to go to graduate school and our application timelines were completely different.
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The med school calendar was, you know, everything happened much sooner than for the grad school calendar.
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Um, and so he had already, you know, he had to pick where to apply and all of that before I even had any clue where I might want to apply.
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So, uh, towards the end of the med school application cycle, um, I, uh,
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you know, found out about this program and research area at Dartmouth and applied and I got in and I said, well, that's where I'm going.
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Do you want to come?
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So he applied, but it was so late in the cycle.
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I think they had already given away all but just a couple of spots.
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So long story short, it was a lot of, you know,
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Intense just waiting and hoping and drama, kind of last-minute drama.
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But he got the last interview spot.
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He got put on the wait list.
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And then two weeks, I think this was in –
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probably June, about two weeks before he was all set to move to Houston to go to medical school.
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He got the call that he had gotten in off the wait list.
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And so we switched gears and we moved to New Hampshire
Facing Cancer: A Family's Challenge
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And the rest is kind of history.
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We got married during med school and grad school.
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I was in grad school for, as you mentioned, cognitive neuroscience and social psychology.
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I graduated a couple of years before he did.
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So I thought, well, we're kind of out here in the middle of nowhere.
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There's not a lot of career opportunities for me at this moment.
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And so, you know, why not go ahead and just use this opportunity, start a family, because we knew that was something we wanted in our future.
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And so we did, we had our first daughter in the, I don't know, third or fourth year med school, all blurs together now.
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But, you know, we went against all the quote unquote good advice and had a med school baby.
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But it was a good thing that we did because when the baby was about a year old, Will was diagnosed with testicular cancer.
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And that of course was just a big shock, you know, to our system because
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even though it's one of the, you know, quote, good cancers.
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And I hate that term because no cancer feels good or is good, but it's a very treatable cancer.
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But even so, you know, that's a cancer that happens mostly to young people.
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And when you are in your mid-20s, as we were when that happened, you know, you still feel like your whole life is ahead of you and you feel a little bit invincible and you're healthy and in your prime.
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And, you know, you're not
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sore when you get out of bed yet, things like that.
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And so it really was a psychological shift.
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And, you know, it was difficult to kind of take on this new identity, right, of cancer patient and co patient that cancer was now a part of our lives.
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So that was really just mind altering, you know, it turned out,
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You know, best case scenario, he just had to have surgery and that was all that it required.
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So he had an orchiectomy.
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He did not have to have radiation or chemo.
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And that was kind of the end of that.
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We were told, you know, life will be able to go on pretty much as normal from here.
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So we just kind of put it behind us and moved on.
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And we had, again, against all the good advice, we had another baby in residency.
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So I had started my career at that point.
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I was working at a university in a center for gifted education.
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I kind of switched gears into the university.
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education administration kind of roles.
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And he was in residency for ophthalmology at the University of Iowa.
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And we had our second baby.
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And then when she was about a year old, so same as the first one, when she was about a year old, he got testicular cancer in the other testicle.
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And that was really a blow because
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for many reasons, you know, one is just so statistically unlikely, you know, there's already, you narrow the pool down to people who got testicular cancer once.
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And then within that pool, 1% of those get it twice.
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And it was not a reaction to any sort of treatment because all he had had was a surgery.
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He had not had radiation or chemo.
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So just luck of the draw, you know, got it again in the other testicle, um,
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So that time was more complicated to figure out what we wanted to do about it, because now, you know, you're talking issues of fertility and we were still, you know, late 20s, early 30s, somewhere in there.
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So we had to think about, you know, are we done with our family?
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We had to think about hormone replacement therapy and how would he, you know, be able to have access to the testosterone that he needed.
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And I learned all about why testosterone is, you know, important for so many things.
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I had no idea it had a big effect on so many systems, but I found that out the hard way.
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So we, you know, dealt with that.
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And again, he just had surgery.
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He didn't need radiation or chemo again, thank goodness.
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But he did start hormone replacement therapy.
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And that has been just a decade long.
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I mean, that's still something that we struggle with.
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That is a really kind of, you know...
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not overlooked, but certainly not talked about as much, that aspect of things that, you know, that is a rough road and it's hard to get things right.
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And it's difficult on everyone.
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It's difficult on the patient.
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It's difficult on the people living with the patient, people who love the patient.
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Um, so that's been a whole journey as well, but, um,
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You know, he's pretty, pretty stable now.
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Probably still some tweaks to be done, but for the most part, everything's going pretty well.
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And he was able to graduate residency on time.
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And, you know, that was a concern for a little while, but thankfully his program was wonderful.
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um, about supporting him and, and kind of pitching in for him.
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Um, that could be a whole other podcast about how to have a good residency program like that.
Balancing Career and Family During Residency
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Um, but yeah, he graduated and, and we moved out to the West coast and he started, um, work in a private practice out here.
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And life was starting again, right?
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Yeah, we were finally settling in and kind of starting on the life that we had worked so hard for, yeah.
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And through reading books,
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some of your papers and writing, it also is very evident that those two experiences that you described, and we talked a lot about the patient in this case, but also had an impact on you as a spouse, as a young spouse, and so many unanswered questions.
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And like you share with the hormonal therapy, so much that you had to find out the hard way
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as opposed to maybe the medical community facilitating some of this a little bit better, right?
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So I think it already puts you through a difficult position that literally millions of families go through on a regular basis.
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And it's a, it's a, it's an opportunity for healthcare, um, to do better for sure.
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But it just shows you like how complex, right.
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Things are, you're talking about, okay, we, we have a cancer and I have a recurrent cancer, but then there's.
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all the other entanglements of lifelong hormonal therapy what does it do at home how do you do it i'm sure also there's a whole another podcast in terms of getting that approved and getting that on time so insurance yeah
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Yeah, it just adds so many layers of complexity, and I think it starts to push us.
Forgotten Families in Medical Settings
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And really what I wanted to focus about today, which is the forgotten patient, which I do believe that there are many, many clinicians listening to us who have the best intentions of being kind, of being compassionate.
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But yet, a lot of times I think families are blind spots for us.
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We might give them an update, right?
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I often hear, unfortunately, I hear comments and sign outs of, oh, that's a difficult family.
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And what I always try to remind people is that maybe you should be thinking that it's a family in a very difficult position.
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And that how would you be in that position?
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And more importantly, what can you do to help them?
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Because, well, we'll talk about it a little bit later, but there's little actions and there are little things that people do that can make a huge difference, right?
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So let's talk, Kristen, now of...
Crisis at Home During COVID-19
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And that is the evening that we played the 911 tape.
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And tell us what happened and what was it for you to be the family member, the loved one of a patient who had a sudden cardiac arrest?
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Yeah, so that was May 11th of 2020.
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So it was right in the middle of all the lockdowns and kind of the height of the COVID scare.
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You know, we didn't know a lot about it yet, but it was starting to be rampant in the U.S. We didn't know if masks worked yet.
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We didn't have a vaccine yet.
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I mean, it was very much in that.
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time where everybody was, you know, scared and uncertain about things.
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It was the night after Mother's Day, actually.
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So we had a really nice Mother's Day and then went to bed and 445 in the morning, I woke up to him making these really loud
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And, you know, I was coming out of a deep sleep and was groggy and I thought he was just snoring.
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And so I kind of pushed him over a little bit, you know, tried to roll him over where he might stop snoring, but, um, that didn't do anything.
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And then I kind of, you know, shook his shoulder a little bit to see if I could wake him up.
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And, and he didn't respond in any kind of way that he normally does.
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He just kept making these sounds and,
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That's kind of when I registered that something was wrong.
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But I am not medically trained.
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I am not a physician.
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I am not in medicine in any way.
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And so I didn't know at the time.
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But of course, those were, you know, agonal respirations that I was hearing.
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And they sounded a little bit, you know, urgent in some primal way.
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I didn't know what they were, but I knew that they're not right.
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You know, something about this is bad.
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And so I called 911.
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And as I was dialing, I put my head on his chest to see just sort of, I don't know, out of instinct or because that's what you see in the movies or who knows why.
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But I did that and I registered with, you know, some part of my brain that his chest wasn't moving up and down and I didn't hear anything in it.
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No heartbeat that I could tell, you know, but it didn't really fully sink in.
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It was just sort of like a fact that I registered at that moment.
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I talked to the dispatcher, as you heard, and she's the one who recognized the signs and knew what to do about it.
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She knew that he was having a cardiac arrest and told me to begin CPR, and she instructed me on all of that.
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I had just had a cervical disc replacement a few months before, and he's about 13 inches taller and, you know, 100 pounds heavier or something or more.
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Um, and so I, I was really concerned about my ability to move him to the floor.
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She had asked me to do that.
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And I thought I can't do that without hurting both of us.
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Um, I didn't, I'm kind of glad that I didn't know at the time, you know, how, how, uh, how that decision might affect the outcome.
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Um, but thankfully we have a pretty firm mattress.
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Uh, so I did CPR on him for 10 minutes in the bed and
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before paramedics came and the dispatcher, her name was Lisa.
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She stayed with me the whole time, kept, you know, counting to help me keep pace, just started taking information, asking me other questions.
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So we would kind of alternate between the counting and the questions.
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And it was just the longest time.
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most agonizing 10 minutes of my life.
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And I was afraid, you know, my kids were sleeping in the next room.
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They were eight and five at the time.
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And I, my biggest fear was just that they would come in, you know, and see all of this.
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And so I was just hoping that they would stay in bed, stay asleep and not have to see their dad like that because I was watching him turn blue and then purple.
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And, you know, you all know very well,
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you might, I'm sure you're used to it at this point, but when you look at a human body that is, you know, dying, it doesn't move the way that you expect it to move.
00:19:02
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It doesn't have the color you expected.
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It just, it looks all wrong, you know?
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Um, and so when you're looking at a body like that and that body is your husband and your children's father and the person that you're building a life with, um,
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it's really traumatizing, you know?
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Um, and so I didn't want to, I didn't want to have the kids see something that they couldn't unsee.
00:19:25
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And so I asked the dispatcher to tell the paramedics that they were there.
00:19:28
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And, um, when they arrived, they shut the kid's door and thankfully they stayed put and they didn't see anything, but, um, they came in and they took him and they, they shocked him five times, I think before, um, his heartbeat started.
00:19:43
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I don't know, I think three rounds of epinephrine and a dose of amiodarone and probably other things I don't know about.
00:19:50
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I watched them take him down the stairs.
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And by that time he was gray, you know, that ashy gray color.
00:20:02
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And they laid him on the living room floor because it was hardwood down there.
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And I saw them get out.
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all their equipment and, you know, I saw the paddles and I heard a flat line and somewhere I registered, you know, oh, that's, that's supposed to be a pulse, you know, that's supposed to be a heartbeat and it's a flat line.
00:20:23
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Um, and then I saw that they were about to put the paddles on him and I couldn't watch and I didn't want to be a distraction.
00:20:34
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or lose my composure.
00:20:36
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And so I turned around and went up the stairs.
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And as I was climbing up the stairs, I heard them deliver the first shock and I heard his body just slam against our hardwood floor.
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And he is six foot four.
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So it's a big body.
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And to see him just, you know, laying there limp and gray and then hearing him slam against the floor, it was just...
00:21:02
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The whole thing was, was extremely traumatic.
00:21:06
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And I'm so thankful that I, you know, was able to remain calm.
00:21:09
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And I just went into this kind of eerie place of just what needs to be done right now.
00:21:16
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You know, I just sort of went on autopilot or something.
00:21:20
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I don't know, maybe it's what you all experience in your jobs, but.
00:21:24
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you know, I wasn't really taking in the too much about the emotional aspects of it at that time, because I knew if I let myself think about that in that moment, that I may not be able to do what needed to be done.
00:21:36
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So I'm glad I was able to, to do those things.
00:21:38
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But, you know, it was the hardest experience of my life.
00:21:46
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You know, they took him to the emergency room once they got his heartbeat back.
00:21:51
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And then I had to do the next hardest thing I'd got in my life, which was to go into my kid's room and try to say something to them about what had happened.
00:22:01
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And at that point, I did not know.
00:22:04
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Would he be, would he survive first of all?
00:22:07
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And if he did, would he be himself?
00:22:09
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Would he remember us?
00:22:11
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Would he remember himself?
00:22:13
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Would he be able to function?
00:22:15
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Would, you know, what are we talking about?
00:22:16
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What kind of damage has been done?
00:22:18
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I didn't have answers to any of those questions.
00:22:23
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And of course, kids ask so many questions and you know, that's their daddy.
00:22:30
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I had to figure out what to say.
00:22:32
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And I just said that he got sick and needed some equipment that we didn't have here at home.
00:22:39
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And so the paramedics came and took him to the hospital where they had that equipment.
00:22:44
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And, you know, we'll, we'll learn more later.
00:22:46
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That's kind of all I could say in the moment.
00:22:49
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I didn't want to lead them to any questions that I didn't have answers to or anything that was too scary before, you know, if it wasn't going to be necessary, I didn't want to
00:23:00
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them unnecessarily.
00:23:01
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So just tried to give them the information as I had it, but in a kid-friendly way.
00:23:06
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But, you know, kids are intuitive and they're smart and they pick up on, you know, people's emotions around them and they know when something's just not quite right.
00:23:13
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So, yeah, it was tricky.
00:23:18
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And there's no right answers there, right?
00:23:20
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I think that nobody has expertise on that.
00:23:23
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I think with kids in critical illness, they pick up more than we think.
00:23:27
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And I think trying to explain things in the simplest but closest to the truth way is probably always best.
00:23:34
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And the one thing that I think a lot of our listeners or our clinicians can relate to a lot of the clinical aspects of what you're describing is
00:23:44
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But what probably very few of them can relate to is
Isolation in Hospitals Due to COVID Protocols
00:23:48
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This is happening in your bedroom.
00:23:51
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And this is happening to your loved one.
00:23:53
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And that is something that clinicians, if some may have experienced, but usually it's a stranger in the hospital.
00:24:00
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And it's a very different context, right, of what you were going through.
00:24:05
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The other thing that you didn't mention here is...
00:24:07
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but I know from other accounts that you have shared is that while this was all happening, everybody in your house had a hazmat suit, mask, and you couldn't even see who they were, right?
00:24:18
Speaker
So it probably was a surreal situation on steroids because not only what's happening, but then all these people that seem that they came from out of space are in your house, right, working on your husband trying to revive him.
00:24:34
Speaker
So when he went to the hospital, I would imagine that because of the timing that you weren't allowed to go to the hospital or if you were, it was very briefly and you really had to wait at home for news.
00:24:47
Speaker
Is that what happened?
00:24:49
Speaker
Yeah, so I was allowed to go.
00:24:53
Speaker
I didn't know why, because I knew, you know, it was all over the news that no visitors were allowed in the hospitals.
00:24:58
Speaker
And so I already thought that was unusual.
00:25:01
Speaker
But I wasn't going to say no.
00:25:03
Speaker
And then when I got there, I saw a sign on the door that said, you know, the three reasons why you could allow someone in.
00:25:10
Speaker
One of them, I think, was pregnancy.
00:25:12
Speaker
You could, you know, if someone was having a baby, their partner could come in with them.
00:25:15
Speaker
There was some other one.
00:25:18
Speaker
And then the only one that applied to me was end of life case.
00:25:21
Speaker
And so that's how I realized that.
00:25:23
Speaker
oh, wow, you know, just how serious all of this stuff was is end of life.
00:25:29
Speaker
I mean, I knew his heart had stopped, but then they got his heartbeat back, you know, and so I thought we were kind of at least somewhat out of the woods, but then seeing those words, end of life case, it just felt like, oh, no.
00:25:41
Speaker
And so I went in, and they put me in this waiting area that's in the radiology department,
00:25:48
Speaker
Um, I like to think that this will happen next was because of COVID and, and the protocols were disrupted and hadn't really been, you know, new ones hadn't really been well established yet, but who knows?
00:25:59
Speaker
Um, I think this kind of thing happens a lot because it's, it's just due to, you know, some overlooked details, but they put me in a waiting area in radiology where the patients who were waiting for a scan, um,
00:26:14
Speaker
would go after they had their gown on while they were waiting for someone to come take them back to get their scan.
00:26:21
Speaker
The problem with that is that in radiology, the walls are aligned with lead.
00:26:27
Speaker
And so it cut off my cell phone signal.
00:26:31
Speaker
So I'm already there alone because no one else can come with me.
00:26:34
Speaker
I'm not allowed to, or at least no one is taking me to wherever he is.
00:26:39
Speaker
You know, I'm not with him.
00:26:40
Speaker
I'm just standing there alone and in shock and, you know, shaking and trying to make sense of everything.
00:26:46
Speaker
And I'm also the liaison to all of our family members who, you know, like his parents and my parents and our close friends who I had let know what happened.
00:26:59
Speaker
you know, they cut me off from my ability to share information with them.
00:27:02
Speaker
And they also cut me off from my support network in a time of my greatest need, you know, for support, for social support.
00:27:12
Speaker
Um, and so I, you know, I was supposed to wait in there and, and wait for updates from the various staff members who would come in and, and tell me what is going on.
00:27:24
Speaker
but I couldn't get any cell phone signal.
00:27:25
Speaker
So I would walk down the hallway and there was an area where I could still see the room to see if anyone was coming in to give me an update.
00:27:32
Speaker
Um, but I, it was closer to the waiting area.
00:27:35
Speaker
It was still on the other side of the waiting area, but, but over there I could pick up a little bit of signal.
00:27:41
Speaker
Um, and so I would just stand there and make my call or send my text or whatever I needed to do.
00:27:46
Speaker
And then I would go back into the room and wait until I needed to
00:27:49
Speaker
you know, check again to see if anyone had, had asked me anything or if I wanted to make a call.
00:27:55
Speaker
Um, and so I'd kind of go back and forth.
00:27:57
Speaker
I think I was there for about an hour and I got a few updates, um, during that time, but, um, which, you know, I could talk about that as well.
00:28:08
Speaker
That, that was a little bit tricky, but ultimately they, the lady who had let me into the hospital, um,
00:28:18
Speaker
came and found me and told me that I had to leave the hospital because I was making people nervous because they didn't know if we had COVID and that's why he had his cardiac arrest, right?
00:28:32
Speaker
They had done a test on him, but this was back when it took 24 hours to get a result.
00:28:38
Speaker
And so they didn't know yet.
00:28:40
Speaker
And I was wearing a mask, but again, we didn't know if masks were effective at that point.
00:28:45
Speaker
And so they were nervous that I might be spreading COVID.
00:28:48
Speaker
And so they kicked me out of the hospital.
00:28:52
Speaker
And I just feel like, yes, that was during COVID and maybe it's an extreme example, but maybe not because that kind of thing of just not thinking about that there's no cell phone signal in this part of the building and how that might affect the patient and the family and, you know, all these other people.
00:29:09
Speaker
I think decisions like that get made all the time without even realizing, you know, that you're creating a problem.
00:29:18
Speaker
And I think what I always tell my kids and but I think it's true for life is that most people that do things that can be harmful and do it out of ignorance or blind spot more than deliberate right intentionality.
00:29:32
Speaker
But I think it points out to a big problem we have in healthcare.
00:29:37
Speaker
I think that your experience probably was worse because of COVID.
00:29:43
Speaker
However, I think there's elements of the isolation, the lack of information, the lack of true compassion that would have probably been present even without COVID.
00:29:53
Speaker
And I think that's why what you're doing today and sharing your story is
00:29:58
Speaker
and being an advocate for families and patients as well is so important.
00:30:04
Speaker
So the good news is that he did great, right?
00:30:11
Speaker
He, I presume, was on a ventilator, taken off the ventilator.
00:30:14
Speaker
He was neurologically intact as far as they could tell that time.
00:30:18
Speaker
And that all happened probably, from what I understand, within days, which is phenomenal.
00:30:24
Speaker
Eventually, he came home.
00:30:28
Speaker
you then had trouble, right?
Post-Crisis Trauma and Healing
00:30:30
Speaker
And you talk about or you write about the quiet place.
00:30:33
Speaker
Could you share that with us, Kristen?
00:30:36
Speaker
Yeah, so, right, as you said, so that was a Monday morning that he went to the hospital and he was home by dinnertime on Thursday.
00:30:44
Speaker
So, you know, that piece is just absolutely miraculous.
00:30:49
Speaker
absolutely no qualms with the quality of the medical care that he received.
00:30:54
Speaker
And I am so grateful to the people that gave it to him and, and saved his life and brought him back.
00:31:01
Speaker
But once that crisis, you know, period was over where he was in the ICU and, you know, we weren't sure what was going to happen.
00:31:11
Speaker
And then we got little bits of information over the course of those days.
00:31:14
Speaker
And during that time, I just really had to stay focused on,
00:31:19
Speaker
the facts of the situation.
00:31:22
Speaker
And so it's kind of almost a little bit detached, you know, but then once he came home and that crisis mode was over and I could just relax theoretically.
00:31:35
Speaker
I, I, something really weird happened where I just couldn't find any words, you know, I just, I, it was kind of like I was in shell shock then at that point.
00:31:47
Speaker
I noticed because I did have training in cognitive neuroscience, so I'm nerdy like this, but I noticed that I was having a hard time finding words, using words, making sense of words, following conversations.
00:32:00
Speaker
And I thought, huh, that's curious, kind of interesting.
00:32:04
Speaker
But, you know, couldn't do anything about it at the time.
00:32:07
Speaker
But then later on reflecting on it, you know, I...
00:32:12
Speaker
I realized, you know, that was a trauma response and that is probably very common after many kinds of trauma, including medical trauma.
00:32:22
Speaker
Um, and I, I didn't know how to explain to people, you know, that my brain just wasn't working and I'm not myself.
00:32:30
Speaker
I am not okay right now.
00:32:33
Speaker
And so I called it the quiet place because it just, it did feel, feel very quiet.
00:32:37
Speaker
I just had no language and I had trouble following language.
00:32:41
Speaker
I mean, I could follow the logistics and, and, you know, talk about just sort of the straight facts of the day, but anything other than, you know, things related to him and his recovery, it was just, I didn't have any access to any of that.
00:32:55
Speaker
conversations felt so trivial and unimportant and couldn't follow them, couldn't concentrate well enough.
00:33:05
Speaker
So I called it The Quiet Place.
00:33:06
Speaker
And the thing that really helped me come out of The Quiet Place was to find the words that were missing, if that makes any sense.
00:33:16
Speaker
So I didn't know this.
00:33:18
Speaker
I didn't know to do this.
00:33:19
Speaker
But just over the course of the next six months or so,
00:33:23
Speaker
You know, I found things here and there.
00:33:25
Speaker
One of the things that I found was a paper by Kirstie Haywood and Katie Dainty called The Forgotten Patient.
00:33:32
Speaker
And that title just jumped out at me because I felt like that is me, you know.
00:33:38
Speaker
And so I read that and they had words in there like co-patient and co-survivor and, you know, concepts like that.
00:33:44
Speaker
And I thought, how have I never heard of this before?
00:33:47
Speaker
You know, with the two rounds of cancer and everything before that, like this is what this experience is.
00:33:53
Speaker
is that represents, it captures it.
00:33:56
Speaker
You know, I'm not just...
00:33:59
Speaker
I'm not just someone on the side.
00:34:02
Speaker
This all happened to me too, you know?
00:34:06
Speaker
Um, so that felt really validating and it helped to have a name to call it because then you can start talking about it with people and explaining why these things are affecting you so much.
00:34:16
Speaker
And another thing I found was a lay responder, um, and bystander resource guide that was written by a paramedic in Canada named Paul Snowball and he works for the region of Peel and
00:34:26
Speaker
And since then, they've made this publicly available online.
00:34:30
Speaker
And he just worked with, he'd seen so many other people in my situation that responded to an out-of-hospital cardiac arrest, and he started to notice they all had very similar questions or things that were bothering them or, you know...
00:34:44
Speaker
he started to notice some patterns in all of this.
00:34:46
Speaker
And so he just put all of the answers and resources and tips and suggestions and things into a written document.
00:34:55
Speaker
And he's published that and it's available online.
00:34:56
Speaker
You can find it if you Google it, but it answers a lot of questions that lay people have.
00:35:00
Speaker
Like, what, what was that sound he was making?
00:35:02
Speaker
Why was he doing that?
00:35:04
Speaker
Why do they turn those colors?
00:35:05
Speaker
What is a cardiac arrest?
00:35:08
Speaker
I'm a very educated person, but I'm not medical.
00:35:10
Speaker
I didn't know the difference between a cardiac arrest and a heart attack.
00:35:13
Speaker
And I think most people don't.
00:35:16
Speaker
So it, you know, explains things like that.
00:35:17
Speaker
And that helped to kind of close some loops, you know, that you just ruminate on of open-ended questions.
00:35:24
Speaker
It helps to tie up those loose ends and let your brain find a little peace about those.
00:35:29
Speaker
And then the last thing,
00:35:31
Speaker
I found that really allowed me to move out of the quiet place and start taking action was a book called In Shock by Dr. Rana Adish, who's a pulmonary and critical care physician.
00:35:45
Speaker
And she's also a patient of some very serious illness and has almost died a few times or maybe has died a few times.
00:35:52
Speaker
And she writes about the experience, you know, going through critical care and being in the ICU from both the
00:36:00
Speaker
the physician side and the patient side.
00:36:03
Speaker
And even though I wasn't, you know, the main patient with a capital P, a lot of what she described is what I experienced.
00:36:12
Speaker
And that really helped me feel like, okay, I'm not crazy.
00:36:15
Speaker
I'm not imagining this.
00:36:16
Speaker
I'm not just being too sensitive.
00:36:18
Speaker
This really is how the system is.
00:36:20
Speaker
And these really are problems.
00:36:22
Speaker
And I'm not the only one that sees them
00:36:24
Speaker
and thinks we need to do something about it.
00:36:26
Speaker
And so those three things together really helped me find my voice again and my thoughts again and kind of come out of that and move into advocacy.
The Need for Compassion in Healthcare
00:36:37
Speaker
And I think that obviously hearing your voice has also made a lot of clinicians like myself rethink maybe some of our blind spots.
00:36:47
Speaker
But what's fascinating, Kristen, of your story is that there's universal themes here, right?
00:36:53
Speaker
So all trauma occurs to individuals who need to feel that it only happened to them.
00:37:01
Speaker
And when they find out that it's...
00:37:03
Speaker
prevalent among many others, it validates their experience, right?
00:37:06
Speaker
It's not only you, it happens to a lot of people who go through similar situations.
00:37:11
Speaker
The other thing is that in the ICU, we live in a very, obviously, it's high stakes, high acuity, very intense relations with patients.
00:37:23
Speaker
But a lot of times, I mean, somebody like a young person like your husband,
00:37:27
Speaker
leaves the ICU after a cardiac arrest and the ICU team is high-fying each other because they saved the patient, which is true, but we have no notion of the road ahead and how hard that will be, right?
00:37:39
Speaker
So we don't talk about it.
00:37:41
Speaker
We don't share with that.
00:37:42
Speaker
And slowly we've learned...
00:37:44
Speaker
that patients have what we call post-ICU syndrome, that there's a lot of trauma involved with being severely ill.
00:37:52
Speaker
But we've also learned more recently that families go through that.
00:37:55
Speaker
And there is science behind this, but we still need to make more and more clinicians at the bedside aware of this blind spot.
00:38:04
Speaker
And then obviously, which is more important is
00:38:06
Speaker
What can we do to move the needle?
00:38:08
Speaker
And we'll talk a little bit more about that.
00:38:10
Speaker
But before we go there, I know that we have some time constraints.
00:38:14
Speaker
One thing that caught me from your story that we were talking before we recorded, that is a theme I've seen in other situations.
00:38:21
Speaker
And I think it's important for clinicians, especially for all the physicians who are listening.
00:38:26
Speaker
We don't always value or we don't always appreciate what families really value.
00:38:32
Speaker
We obviously as physicians give tremendous value to our knowledge, to the capacity a team has to provide medical care.
00:38:40
Speaker
But when you think of this whole ordeal with the cardiac arrest, especially your heroes, um, are Lisa, Lieutenant Greg and Roger.
00:38:50
Speaker
You want to just say a couple of words about those people?
00:38:53
Speaker
Yeah, so Lisa is the 911 dispatcher that you heard on the call, and she's my hero because she just knew what to do.
00:39:01
Speaker
She knew the signs.
00:39:02
Speaker
Without her, I wouldn't have done CPR.
00:39:05
Speaker
You know, everybody gives me credit, but I give her credit because I didn't know to do it, and if it weren't for her, my husband wouldn't be here probably, and she did just an excellent job at walking me through that and staying calm and sharing all the information with the paramedics and just...
00:39:23
Speaker
you know, just was above and beyond anything you could hope for.
00:39:27
Speaker
I'm so glad she picked up the phone that day.
00:39:31
Speaker
Lieutenant Greg, he was one of the paramedics that came in and he, you know, as you mentioned, they were in hazmat suits and all I could see of people were their eyes.
00:39:45
Speaker
everything else was covered up and they had hoods on.
00:39:48
Speaker
And so, you know, even the eyes were hard to see because sometimes the hoods would fog up.
00:39:52
Speaker
But the thing that I remember about him, he was a liaison between the paramedics and me.
00:40:00
Speaker
And he would come up and tell me what was happening.
00:40:03
Speaker
And he would use, you know, plain language and
00:40:08
Speaker
that was really helpful.
00:40:09
Speaker
But the thing that really stood out and makes me still kind of, you know, tear up when I think about him is he had compassion for me.
00:40:19
Speaker
I could tell, right?
00:40:20
Speaker
He was being very clinical in his words.
00:40:22
Speaker
He was just being very, you know, this is the situation, this is what's happening.
00:40:27
Speaker
But I could see in his eyes, and that was all I could see of him, but I could see in them that he had compassion, that he understood the gravity of the situation, that he understood that those two kids were in that room.
00:40:41
Speaker
He told me later when we did a reunion meeting with everybody that he actually made eye contact with my older daughter,
00:40:49
Speaker
Before, so they shut the door, they came up and there's all the paramedics in their asthma suits and my kids were awake, but thankfully, they stayed in their beds.
00:40:59
Speaker
But he said he made eye contact with one of them and then the door closed and he said that moment just haunted him.
00:41:06
Speaker
You know, he saw those kids in there and he, you know, they come in your house and they see the intimacy.
00:41:12
Speaker
They see the family photos on the wall.
00:41:14
Speaker
They see, you know, the family together there and they see how vulnerable everyone is and how scared everyone is.
00:41:22
Speaker
And he responded to that aspect of it as well.
00:41:26
Speaker
You know, he showed me compassion.
00:41:29
Speaker
He I could hear it in his voice.
00:41:30
Speaker
I could see it in his eyes, the words that he chose.
00:41:34
Speaker
every bit of support that he could.
00:41:35
Speaker
He would answer my questions.
00:41:37
Speaker
He gave me, you know, things in writing.
00:41:40
Speaker
He gave me, um, the slip to get into the hospital cause he knew I'd want to go with him.
00:41:45
Speaker
Just, he treated me like, you know, another human instead of just like some case he was responding to.
00:41:54
Speaker
Um, and he showed me a lot of kindness and compassion and empathy for
00:41:58
Speaker
And then Roger, a similar thing.
00:42:01
Speaker
Roger was one of the nurses that my husband had while he was in the ICU.
00:42:07
Speaker
I think he was the last nurse he had because even my husband remembers Roger.
00:42:16
Speaker
He was the only person in all of my experience with the hospital system between the first cancer, the second cancer, the cardiac arrest, everything, the emergency room, the ICU.
00:42:29
Speaker
He was the first person, and this is right before discharge, who ever asked me how I was doing.
00:42:39
Speaker
And just the fact that he knew to ask that, I mean, it's not hard to know, right?
00:42:44
Speaker
I mean, but the fact that he was the only one, just the act of asking that meant so much and showed so much compassion.
00:42:53
Speaker
And then, you know, he did things like...
00:42:56
Speaker
He said, this must be hard for you and your family.
00:42:59
Speaker
And do you have any questions that I can help answer?
00:43:02
Speaker
Or, you know, here's my cell phone number.
00:43:04
Speaker
If you would like any updates, please feel free to, you know, text me and I'll update you anytime.
00:43:12
Speaker
If you want, again, we were separated.
00:43:14
Speaker
So, you know, if you want to speak to your husband, I can set up a FaceTime.
00:43:17
Speaker
You just let me know.
00:43:22
Speaker
He, you know, he sat there with him and he I brought some photos, some family photos up to the hospital and he went through the photos with my husband and just asked him questions about him, but not in a way that was like.
00:43:35
Speaker
I need to assess your cognitive function and your memory.
00:43:37
Speaker
And so we are going to do this task together, right?
00:43:40
Speaker
No, he just made conversation and was a human talking to another human about their family, you know, and he's asking about where your kids go to school and what are they interested in and what are their names and how old are they?
00:43:53
Speaker
And, you know, just all the things where really he was assessing my husband's cognitive function and he was also helping him exercise his cognitive function.
00:44:02
Speaker
Um, but he did it in such a kind, compassionate human way.
00:44:06
Speaker
And I mean, there's example after example of things that he did, but, but that is the common theme with all of them is they treated me like a human, right?
00:44:17
Speaker
And I think, Christina, it just speaks to what we were talking about before recording that at the end, it doesn't really matter what you know, what you do.
00:44:25
Speaker
It only matters how you make other people feel.
00:44:27
Speaker
And they made you feel seen, validated, and cared for.
00:44:32
Speaker
And that is exactly why we're talking today, because I do believe there's an opportunity for all our listeners, all our clinicians,
00:44:39
Speaker
to do little things that will help other family members and co-survivors or even those i mean who don't survive right co-patients is called them of critical illness to feel seen to feel cared for and i i really appreciate all you're doing and telling this story because you you you both i mean do it in a great way very eloquently it's also funny but it's also very touching so um
00:45:05
Speaker
I know that your goal now in your efforts is to make medicine more humane.
00:45:11
Speaker
And I think we all should embrace that.
00:45:14
Speaker
Where can people find you online or where are you active?
00:45:18
Speaker
I know you also have a podcast.
00:45:19
Speaker
We'll link all these to the show notes, but I just want to share a little bit with our audience as we close.
00:45:25
Speaker
Yeah, so you can find everything we do at glockumflecken.com.
00:45:31
Speaker
We're also everywhere on social media.
00:45:34
Speaker
I think we're most active on Twitter and Instagram, TikTok and YouTube, but we are kind of everywhere.
00:45:43
Speaker
And like you said, we do have a new podcast.
00:45:45
Speaker
It's called Knock Knock High with the Glockum Fleckens.
00:45:48
Speaker
And our main focus is to show, you know, to show
00:45:53
Speaker
kind of highlight the humanity in medicine.
00:45:56
Speaker
So to, you know, everything from showing that doctors are humans, you know, and we hear stories from people about their experiences as doctors and, you know, it's a comedy podcast.
00:46:07
Speaker
And so a lot of the times the stories are from training because that's where all the good, funny stories come from.
00:46:12
Speaker
But we, you know, we highlight the humanity of doctors, but also the humanity that doctors should show to patients and to co-patients and family members.
00:46:24
Speaker
And we do interviews with interesting guests and we play games with them and hear stories and it's a fun time.
00:46:28
Speaker
So we talk about, you know, as you mentioned, we kind of talk about some serious topics, but in really funny ways.
00:46:34
Speaker
And sometimes we're just silly.
00:46:36
Speaker
And so it's a fun listen.
00:46:39
Speaker
We like to close the podcast by asking our guests a couple of questions unrelated to the topic and really digging into that humanity, like you said, or other aspects
Influence of Literature on Advocacy
00:46:49
Speaker
Would that be okay?
00:46:52
Speaker
So the first question is related to books.
00:46:54
Speaker
Are there any books that have influenced you significantly or that you have gifted to others?
00:47:01
Speaker
You could ask my husband.
00:47:02
Speaker
I have a real problem with books.
00:47:04
Speaker
I buy them too much.
00:47:08
Speaker
I mentioned it earlier, but the one that really has influenced me the most in recent years has been In Shock by Rana Adish.
00:47:17
Speaker
There are so many layers to it, and she writes so beautifully, almost poetically, and just really illuminates a lot of really interesting and important things.
00:47:26
Speaker
And I think, you know, I always recommend that book to anyone who interacts with critical illness in any way, whether that's as a patient, a family member, a physician, a nurse, whoever.
00:47:39
Speaker
That I highly, highly recommend, especially for an audience like yours.
00:47:43
Speaker
I think it's required reading.
00:47:48
Speaker
The second question is, what do you believe to be true in medicine or in life that most other people don't believe or at least don't act as they believe it?
Humanity in Medical Practice
00:47:59
Speaker
I say a lot and I really, really believe this and have said this ever since my own husband was in training, which is before you are a doctor or a clinician, you
00:48:15
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you are a human, right?
00:48:17
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And medical training sort of teaches
00:48:22
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doctors to suppress their humanity to ignore their humanity put it in a box and deal with it later and you know I can kind of see the intention behind that of you you've got a job to do and you need to be be sure you can do it but I don't think it does anyone any favors to deny your own humanity or to deny you know your humanity to other people and your interactions with them
00:48:48
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It's a great point.
00:48:48
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I think Picasso used to say that every kid is an artist and education takes it away from them.
00:48:54
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And that is a little bit of what happens, right?
00:48:56
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Every first year medical student is a great human being and then training kind of chips away from it to the point where we forget.
00:49:03
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But I think it's a good reminder, great reminder.
00:49:06
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And the last closing question, Kristen, is what would you want every listener, our critical care doctors and APPs who are listening to know?
00:49:16
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Yeah, I would want them to know that, and I know they know this, but to remind them maybe there's more to medicine than science or disease or research or surgical skill, right?
00:49:30
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That you're not just treating disease.
00:49:33
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You're not just dealing with biology and chemistry and these things.
00:49:36
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You're treating a person, right?
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And that person is deeply connected to other people and to their environment.
00:49:44
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And it is crucially important to consider that context in your interactions with your patients and in your treatment plans with your patients.
00:49:54
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And that, you know, your patient is not the only patient.
00:49:58
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attached to that particular instance of disease.
00:50:01
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So they're more than a case.
00:50:03
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They're a person and they come with other people and the whole thing needs to be seen and understood.
00:50:10
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And I think it speaks very powerfully to the goal of being a healer, right?
00:50:15
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It's not only reducing disease, but healing people in many ways and it goes beyond the patient.
00:50:21
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Again, thank you so much for taking the time to share your story.
00:50:26
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As I mentioned to you, for me, it was eye-opening and very touching when I heard you talk at the critical care meeting.
00:50:34
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And I'm grateful for all you're doing and for all you do to also bring some levity
00:50:40
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with will to the world of medicine, but more importantly, for really advancing the goal of making care for very sick patients more humane.
00:50:50
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So look forward to hearing what's new and what you put out.
00:50:55
Speaker
And again, thank you so much for your time.
00:50:58
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Thanks for having me on.
00:51:02
Speaker
Thank you for listening to Critical Matters, a sound podcast.
00:51:06
Speaker
Make sure to subscribe to Critical Matters on Apple or Google Podcasts and share with your network.
00:51:12
Speaker
Sound's transforming the way critical care is provided in hospitals across the country.
00:51:16
Speaker
To learn more, visit www.soundphysicians.com.