Replay: Why Taylor Coffman’s Story of Survival Matters on aHUS Awareness Day

00:00 Hi friends, it is Matt. Before we roll into today's replay episode, I wanted to give you little context. Taylor, who you're about to hear from again, reached out to remind me that September 24th is AHUS Awareness Day. AHUS stands for Atypical Hemolytic Uremic Syndrome. It's a very rare disease where tiny blood clots form in small blood vessels, which often cause serious damage to the kidneys. 00:27 Only a small percentage of rare diseases even have a treatment, so awareness can really save lives. Taylor first shared her story here on the Life Shift in September 2024, and it feels right to bring it forward again today. So my hope is that this replay not only honors her journey, but also helps more people understand what AHUS is and why awareness matters. If you want to help, you can share this episode with someone who might benefit from hearing it. 00:55 or can post a little note on your own platforms about AHUS Awareness Day. Even a small gesture of awareness can make a real difference. And now we will revisit Taylor's story on the LifeShift Podcast. 01:12 So I have the C-section, it's that sort of beautiful moment, very surrendering moment. She's like this blur of pink, like across the room. My husband is with her cutting the cord and I'm just recovering myself across the room. And of course they're all taking care of the baby kind of. I have one nurse with me and I'm starting to set off alarms. 01:35 And then she's, you know, comforts me and says, oh, you know, these are very sensitive. And so she turns them off and like kind of goes back to some other work. And then I keep setting them off. Then her face just like turned white and then they just rushed me. And it was kind of amazing. This one doctor, it's almost like it was on her phone. She scanned over my abdomen and you just saw my husband explained it. They just all like rushed to me. 02:05 and pull me out of the room into like a separate area to operate on me. Today's guest is Taylor Kaufman. Taylor, among other things, is a courageous mother. She's a patient advocate, and she's an inspiring voice for those that are navigating rare medical conditions. Her story is really one that will probably resonate with anyone that's faced any kind of unexpected challenge in their lives, no matter 02:34 medical or something other than that. She shares her harrowing journey through a life-threatening medical crisis right after the birth of her daughter, or pretty much during the birth of her daughter. What started as a normal delivery quickly turned into a battle for survival, as Taylor was diagnosed with the rare condition known as atypical hemolytic uremic syndrome, I think. You'll have to hear her say it later in the episode. 02:59 This led to multiple organ failures among other challenges. Taylor's story is not just one about survival. It's really about the power of advocating for oneself and the strength found in this vulnerability. And it is the transformative journey from crisis to using that as empowerment. As you listen, it'll be clear how Taylor's experience inspired her to become a patient advocate, connecting with others and fostering a sense of community. 03:29 in some of life's scariest times. Taylor certainly has a series of life shift moments, as do we all, but I know that her specific story will resonate with you in some way. So keep fighting. Without further ado, here is my conversation with Taylor Kaufman. I'm Maciel Houli, and this is The Life Shift, candid conversations about the pivotal moments that have changed lives forever. 04:06 Hello, my friends. Welcome to the LifeShift Podcast. I am here with Taylor. Hello, Taylor. Hi, Matt. Well, thank you for wanting to come on to the LifeShift Podcast and share your story with another stranger. I know you've been sharing your story for the last year or so in all sorts of ways. So hopefully we have a lovely conversation and help. You my goal really is to help people feel less alone in their circumstance just by hearing other people's So thank you for just wanting to be a part of it. Yeah, absolutely. Absolutely. think. 04:36 anytime we can bear witness to people's humanity, it's really empowering for ourselves. And also it's how we get connected as human beings. And I think that that's super important in a time that feels a lot of people are disconnected. Oh, for sure. And we were talking before recording of how, think growing up, society taught me that we don't share those things. We don't share, like, the hard, vulnerable parts of our lives because it showed weakness. When really, now I've learned in my 40s that 05:06 It's kind of strength. oh Oh, it's absolutely strength. It is not easy always to bear those parts of ourselves, but I've found that by doing so, it's really brought me into my purpose. So here we are. you find that each time you tell it, you feel a little bit like freer with it or you're able to tell it in different ways that feel more comfortable to you? Oh, it's interesting. There's a really great... 05:36 quote by, and I always pronounce her name wrong, but think it's Anais Nin that we don't see the world as we are. We don't see it as it is, we see it as we are. And I feel the same way about telling my story because I'm not the same person I was a year ago versus the year before. So every time I've told this story, it comes from a newer, fresher version of me. And so, 06:04 It's interesting how what happened to me was profoundly life shaking. But in my reflection of it, I think the story shifts even. The facts are the same, obviously, but I can agree with that, you know, because, you know, the Life Shift podcast for me, if you're brand new listening and just for you, this show started as a class assignment. actually took a second master's degree during the pandemic because I was bored. 06:34 And I took a podcasting class and I was like, oh, what am gonna do? And thinking back on my life, when I was eight, my mom died in a motorcycle accident. And at that moment, my parents were divorced, lived states apart. I lived with my mom full time. Like my life changed in an instant when my dad sat me down and had to tell me that she had died. And growing up, it was like late eighties, early nineties. People weren't talking about mental health. People weren't talking about how to help a grieving child. I absorbed that everyone just wanted me happy. 07:02 and they wanted to see that I was gonna be okay, so then I became a perfectionist, so nobody would abandon me, and all these other things that happened. But all the while, I was wondering, do other people have these moments in time that just changed everything? And as a kid, you're like, I'm so alone, no one understands. As an adult now, talking to over 150 people, I realize that lots of people have many life shifts in their lives. And if we're lucky enough, 07:28 we get to the place where we can reflect on those and see what we've learned or how we've changed or what they've done to us in a positive way or negative way, but have the ability to reflect on it. And so that's really why this show exists and the reason why I'm so excited to talk to people like you about these moments, even if they are very hard moments to talk about. Yeah, I think it's interesting, you know, that you bring up childhood because I would say that even I had my own version of that. 07:57 kind of story, my dad didn't pass away, but he just left one day when I was a kid. And just, you know, we never, I almost never spoke to him again until he resurfaced in my twenties. And it's interesting that, you know, I think before my child's birth, that was sort of my profound life shift, right? And then I sort of have, you know, had this other sort of rug. 08:26 pulling out for a moment. And I'll just get into it because I feel like we're talking around it. essentially before, I would say even 2020, I feel like that was the life shift for so many of us as well. Before that time, was an actor and I worked in project management as my day gig at a radio station and basically an NPR station. 08:54 You know, had a really great life and it was time for me and my husband of a couple of years to try to have a family. you know, we, after maybe a series of years that we got pregnant and I had a very normal pregnancy, worked through all my pregnancy, nothing flagged. Seemingly normal. Very normal, like. 09:20 You know, I really had good prenatal care. I always preface that with this because I think a lot of people wonder if we just missed something. And I was very, very, I mean, they had me like tested every day. I'd go in and they'd do screenings right up to when she was born. So she was doing great. I was doing great. I went in to give birth. It was an induction. So it took as many moms and poppies out there know it takes a few days and eventually. 09:48 I, they suggest I go in for a C-section because I wasn't progressing and she had, they were noticing she had some like heart stress and I was like deal done. Me and my doula were like, this is where you'd have for days of trying to have a baby. And so I have a C-section. It's that sort of beautiful moment, very surrendering moment. She's like this blur of pink, like across the room. 10:18 I, you know, we actually didn't know if it was a boy or a girl. So was a real surprise moment to hear a girl we chose not to know. My husband, you know, is with her cutting the cord and I'm just, you know, recovering myself across the room. And of course they're all taking care of the baby kind of. I have one nurse with me and I'm starting to set off alarms. 10:41 And then she's, you know, comforts me and says, oh, you know, these are very sensitive. And so she turns them off and like kind of goes back to some other work. And then I keep setting them off. And then her face just like turned white. And all I could feel was very tired. I just felt Because you were mostly probably numb in some capacity. That's right. I just felt very, and it was late into the night. was like, you know, 1 a.m. in the night. 11:11 And a lot of days had been, you've been trying to get to that point. slept at all anyways for days. so I just wanted to fall asleep and then they just rushed me. And it was kind of amazing, this one doctor, it's almost like it was on her phone. She scanned over my abdomen and you just saw, my husband explained it, they just all rushed to me and pulled me out of the room into like, 11:40 into like a separate area to operate on me. I had like a moment to just grab his hand and say, love you, because we knew something terrible was happening. I had no idea what, but I knew it was bad. you weren't feeling anything. You were just basing this off of all the reactions around you. Yeah, yeah, yeah. was really like, it's just imagine in these circumstances seeing everyone panic. 12:04 Well, especially people that are used to seeing so much tragedy, right? So to then see them panic is... was bad. It was really scary. It was really scary. And then, you know, they put me under anesthesia and then I was out for a while. And I was out... I mean, I didn't wake up from anesthesia, essentially, when I should have. And during this time, poor Zach is like a new dad. He couldn't... He actually couldn't... 12:33 at one point find the baby and me. Like she was at the NICU. They were checking her out, making sure she was okay. They weren't, he wasn't sure where I was. And I was being rushed to the ICU because I was essentially hemorrhaging. They, I was bleeding. They could not figure out from where. And all of sudden just like total kidney failure, like apps, like they had to throw me on dialysis, constant dialysis. Like all of a sudden just 13:03 everything started going wrong. Your body was just like shutting down. Yeah, yeah, yeah. And it's it's so interesting. In that time, they managed to stabilize me with the dialysis and and different things. I remember the I think and I wasn't even that scared, but I started to be able to hear and not be able to wake up. That's frightening. You know, you. 13:32 because they probably think you're out too. Oh, yeah. So they're saying. It's very scary too. would say essentially I was trapped in my own body, but I did feel like this strange sense of non-panic is the only way I can put it. Like I wasn't panicking, but I knew I could not wake up. And at one point, because I could hear them talking, at one point I was able to wiggle my toes. 14:02 and they thought I was having a seizure. And I remember thinking in my head, like, isn't this the international sign for I'm trapped in my body? Like, saw this on a movie once. I know, right, right, right. And I can laugh about it now, but it was truly, truly insane. And, you know, I also felt like sometimes I wasn't sure what was a dream and what was not. You know, I had 14:31 essentially what some people would call like the out of body experience. Like in that time, you know, I feel like I remember, and I wasn't sure if it was dream, but who knows, just sitting outside of myself, watching myself on a table. Like being operated on. 14:55 And I just remember having this thought that I wished I had my cell phone so I could tell Zach I was gonna be a while. That's so interesting. It was so crazy. Yeah. How long is this time period? Like, from the time you gave birth to, like, all these events that are happening? Yeah, so I... It's really murky for me, but I had her at 1 a.m. on a Thursday, and I didn't, I think, wake up till late Friday. Or maybe... It was a while. It may be even Saturday. Like, it was a long time. 15:25 Yeah. And this whole time, that in what you can recollect? Is that like when you were hearing, was that most of that time or was that just like a segment of it? It was like pockets. Because I couldn't like, you know, recall it all, but I do absolutely. And they knew that I could because I was saying what they were thinking. Like I could tell them, like, I know you thought I had a seizure, but this is really, I was really just wiggling my toe. Like they I even had an anesthesia come. Sure you freaked them out. 15:53 Oh yeah, they were like, okay. But thankfully I did wake up, but I still didn't get to meet my baby. Because pretty much by the time I woke up, was like Saturday morning, they basically decided to take me back for another surgery, essentially. After you woke up, they're like, we're gonna push you back out. Yeah, because they were worried that I was still internally bleeding. So I still had to go back for another surgery. And now, you know, and then... 16:23 I'm also being ventilated and all that stuff. So this is like a second round of ventilation. And then finally on Sunday, because that whole time, even when I woke up, I was like, where's my baby? Where is she? When do I get to meet her? How long have I been out? Yeah. Yeah. I mean, it was my number one question. Where is she? And... 16:52 I remember my delivery doctor brought me her little hat so I could have her hat. Why couldn't you see her? Is it just because you were too sick and too Yeah, was too dire for me. mean, basically, I was in the most intensive care at that point. And they didn't want any kind of extra infection or something that could come along with seeing anyone? 17:16 You know, it's tough to know exactly. think there was definitely a lot of permissions involved into taking an infant into the ICU, technically also during COVID times. So I finally get to meet her on that Sunday. They bring her in in almost like a Pope mobile into the ICU. She's in this huge little wagon So you just really just got to see her. Well, they let her out. They let me hold her. Thank God. I don't know what I would have done. But, you know, essentially it was like the shortest 17:46 like 20 minutes of my life. They basically let me hold her and feed her a bottle. And like pretty much she went home without me. And I just didn't know if I'd ever see her again. Right, because you didn't have any, did you have any answers or they were still in this mode of like? There was a bit of a debate. I think if you were gonna ask some doctors, they would be like, we knew exactly what it was. And then there were definitely some doctors that didn't, but the problem was, 18:14 what was happening inside my body was truly very multidisciplinary, where essentially speaking now in retrospect, we know, and if I jump into medical Jordan and you're like, slow down, slow down Kaufman, like, what do you mean? But essentially what was happening was on my labs, my nephrologist who is the kidney doctor noticed that my labs, my platelets were incredibly low. And he was like, 18:45 Whoa, what's going on there? And platelets, try to explain, are sort of the construction workers of your, you know, vascular system. They like fix things, they kind of keep it running. And if you have too many, you'll clot. And if you don't have enough, you'll still not clot. So he was like, what's going on there? And then he decides to grab a hematologist. And luckily the two of them basically were like, we think it might be this thing. 19:15 If it's this rare thing, she needs this very, very powerful infusion right now. And while I was sleeping, essentially my husband, thank God, was doing so much research, calling all the doctors in the family to see whether or not he should approve this medication on my behalf. And this is when I always say, when you choose a partner, choose a partner who will like, 19:45 be able to make medical decisions for you. Because, you know, it's true that he, you know, he basically said yes to the medicine, thank God. And that's what helped me get more stable. I still had, you know, weeks of issues, but essentially what was happening was my body, the system in my body was eating away. It's part of the immune system. It was attacking my own body. 20:14 And it was disrupting my blood in such a way that I had both a bleeding problem and a clotting problem. So I was having what were called thrombotic micro-angiopathy, which is tiny blood clots everywhere. So I had tiny blood clots all over my kidneys, in my heart, in my lungs, all over my pelvis. And when they're tiny like that, they attack small blood vessels, but they also move and clump. 20:44 So I ended up, I've had a heart attack. had, so like pretty much, I had a pulmonary embolism. I had all these issues and then I got sepsis and then I got uremia and then I got toxic encealopathy. So it was the waterfall of issues from this, from this birth that just awoke this rare disease, which- So was something dormant possibly in you? You know what's interesting? You could call it dormant. 21:14 For me, technically speaking, at this point in time, with the science that exists, it was idiopathic. So they just don't know. But it could be a gene that they just haven't discovered yet that was not working correctly. But the disease is actually super complicated. So I'll say the name. So I'll say the name so that it might wash over you like a waiter giving you the salad dressings. So it has almost two names. The first one is atypical hemolytic uremic syndrome. 21:44 And the second name would be pregnancy induced, complement mediated thrombotic micro angiopathy. I know it's not. it have an acronym? It's not sexy. No, but I wanted to. So I'm going to start one right here. We're going to call it TMA or A-H-U-S or TMA. So it's a mess. It's a mess. you have a rare disease like this, sometimes there's a lot of debate about. 22:13 Like what to call it. Is there, I mean, is this something that people in the world have seen before or is this so complicated? I would say there's about 3,000 or so people in the US that have it. But I actually think my theory is there's actually more than that. I think there's a really long path to diagnosis. So unfortunately, I think people pass away before they get a diagnosis because... 22:40 There is thankfully a treatment, but that treatment, if you don't get it early enough, the outcomes are not great. So is this something that after this traumatic long period in the hospital, is this something that continues to be part of your life or is this something like, okay, you're done with the pregnancy, it was induced, all these things, we fixed it? No, there's no cure. There's no cure, sadly. 23:10 I will, you know, it's interesting. think some people never have a problem ever again. They can go off med and they just it's but it's what I would call a gamble. Right. You essentially trigger. It's like your body goes through some sort of stress event. And that's why pregnancy is one of the more common triggers, because it's such a stress event that it sort of wakes it up. 23:40 And I think, you know, I basically take what's similar to like a maintenance chemo essentially every eight weeks to make sure my body just doesn't try to murder me. I mean, just thinking about like how fortunate to be in a space where people were able oh to, know, like, mean, I can't imagine like, it's almost like a right place, right time, although terrible. 24:09 to know that there were people around and your husband being like research and deciding. I all those pieces had to come together to make sure that it didn't. That's correct. think- Take you out. I think one of the challenges to this disease is it's like, once it wakes, you have hours, not days. You know what I mean? Yeah, it's fast. It's very fast. And so the damage that disease caused 24:38 then created other problems. So, you know, I then had to deal with, example, I had had heart failure, I now had kidney failure, I now had lungs. So those were all just effects of... So then my lungs, I got pneumonia, it just would fill up with fluid and I had to drain my lungs a bunch of times. You know, I had a clot in my lungs, I had... 25:07 at one point because of kidney failure, my body was poisoning my brain with my own toxins. I could- It's not very nice. So I got aphasia, so I couldn't speak anymore. I couldn't, luckily like that was days not, I mean, getting your EMA you die, essentially your brain's being poisoned. it was, it basically this one- 25:36 disease triggered all of these problems. For me now today, I have what's akin to stage three kidney disease. I was on dialysis about nine months after giving birth and I'm very, very lucky to be in the very small percentage of folks who got to graduate from dialysis without a new kidney. But that's something that 26:05 And luckily my kidneys have shown signs of repair over time, which is kind of, I mean, it's a miracle. I'm not gonna lie. Like, like all of this is some version of a miracle. It's both like the worst thing that's ever happened to me and the most lucky things that have ever happened to me all at the same time. Yeah. Yeah. I was going to ask how, like what you attribute surviving that to. 26:33 Well, I would say that it was the marriage of, well, one, will say I was a healthy person, I think, before all of this happened. so you had no medical issues. Yeah. Generally speaking, all my medical issues were incredibly mild. I was probably making good choices for a person. So I started at a level, like if I didn't have any bench, I wouldn't be here. Absolutely. I mean, they didn't think I was going to make it. Some of those doctors were like, 27:01 We just we didn't think that would it out of there. They would joke about it after to me, which I was found kind of crazy. But I mean, you are kind of like you said, it's kind of a miracle in the sense of all these things coming together that you your body was strong enough to. Well, and it was not linear. Three weeks in, I was in a coma. They they they basically I wasn't getting enough oxygen to my brain at one point. It was so bad. They put me in a. 27:29 And I mean, my husband got the call in the middle of the night, you know, he's up with the baby and the doctor called and is like, cause I had been in and out of the ICU three times and he was like, I just don't know if she's going to make it out of this. We just really wanted him. They wanted to prepare him and he always talks about how he was like, I just don't, she's gonna, you know what I mean? I wasn't awake. I looked half, I was like, basically I looked dead, you know, but I. 28:00 I woke up again. When I woke up from that coma. Yeah, what is that like? Very strange. You think it's like the next morning and they're like, no, no, it's been, it's been days. Yeah. And, and that I, at that point, my doctors, it's so many doctors. And this is sort of when I started writing the article, I wrote this article about a 28:28 I wrote it about a year ago, got published in February. So that's when it was published, because they take your article and then it's in line, you know? But I think they also waited for Rare Disease Month. But anyways, I had so many lovely doctors. you know, some would say one thing and some would say another. And at this point, I was like just out of a coma, half dead. But for some reason, I was just like infused with. 28:57 with, I don't know, I just had no more, like, I just did not have it me to be polite at this No more F's to give. I had no more F's that what you wanted to say? Yes, I did. had no more F's to give. I had to get home to my baby. She was like my North Star. I was like, have got to get home to her. And I just started to call it out. was like, it feels disorganized, you know? 29:24 I just need you to get it together because I'm not getting better. Because at this point, I also had sepsis. And it was just like they were toggling many things. Like I said, I had a bleeding disorder and a clotting disorder. I had an immune system problem, an immunocompromising drug, and a severe infection. So they had to all work together to... 29:54 combat these different pieces and strategize. Without affecting the other piece. Right, right. So it was really, it was a really complicated case. And it was really quite incredible that I think, look, I felt like I was on this bed and I was just like, I'm gonna share this and I'm gonna advocate for what I need and I'm just gonna hope they hear me. And they cared. This is the other thing, I just knew that they cared. Like they were so excited. 30:24 to see me back awake. I saw a few of them actually tear up. I bet. They had been fighting now like three weeks to save me. And thank God, one of my doctors started a text message, put all the doctors on it and they created what I would call sort of project manage my care in a way that was more cohesive and communicative. And at that point I would say I did not go back to the ICU after that. Now it still was ups and downs. 30:54 But I did ultimately, I was on my road to recovery, generally speaking. So really advocating for yourself in the no F's left to give moment of this journey was a trigger to more progress maybe? Yeah. In a way, or eventual progress? think, you know, for me, was truly, you know, I think there's a lot of debate about using, you know, terminology when it comes to illness, but I was fighting for my life. 31:23 Absolutely at that point. Did you feel like you were active like part of the fight? Yes. Yes. That's good. And I was also like having a lot of conversations with essentially whatever you want to call it, God, the universe. I was like, I'm I remember just being in my hospital room and just being like, I'm not going anywhere. I'm going home. Was that part of your life? was there a spiritual element of your life? spiritual now than I was before. Because I also too, feel like I had 31:52 so many those strange experiences. I had other ones too, where I felt like, you know, something was going on. There was a presence there. felt, and you know, sort of joke, sometimes it's hard to know whether it's ICU, like they have psychosis, if you show on so much meds, you're not sleeping well, but for whatever, whatever it was, like, I felt like there was the presence of, of God in that space and 32:21 I believe now I'm actually more so a collective consciousness. So I was like, I knew I was talking to somebody. didn't know exactly who I was talking to, but they knew I wasn't going. They knew. Well, I feel like that's part of it. I mean, I think at the end of the day, I think that's what everyone does, right? think whoever's talking to whoever, you know that you're talking to that person and that's your relationship with whatever that higher power is. Absolutely. 32:51 I would imagine too, people tune into things like that a little bit more when you're going through a traumatic experience, right? I think we just, you're just like, oh, I should have been doing this all along, but now I'm going to like, you know, cause like someone, just talked to someone the other day who went through something, not medically, but like some kind of tragedy in their life. And they started listening to their intuition more and they started listening, you know, and they started connecting with those kinds of things more because I think for so long, or for some of us, I guess just not for so long, but for some of us. 33:20 I felt like I feel like so much of my life, I was just kind of just like going through the motions. Absolutely. And not really tied into anything. And I could imagine if I had gone through something like what you had gone through, this medical emergency, I think that would just naturally make me want to like enjoy each moment now. Is that true for you? Do you feel like a, like I gotta live every moment now? Like I said, this week is my, she's two and a half now. This is how happened. 33:50 you know, began two and a half years ago. And I talk about, you know, she's going to preschool and I talk about these moments and this is what they were what I call happy ever after moments. You know, I, I, don't know what's going to happen really. So for me, happy ever after is in those like beautiful moments that happen all the time and that are extra special. And I do not let them wash over me and not notice. 34:20 I would say I before gratefulness, I mean, I've talked about this before, but I think like gratefulness was an effort and practice. Now I just breathe it, you know? And I wish it didn't take all this to make that happen, but it's true. Yeah. And then it's very hard to look back on your moment or your 34:49 period of time in that hospital with any kind of silver lining, but I'm sure at times there are reflections on like how it's changed you as a person. you see? It changed everything. Do you see like, not benefit, do you see like, I've become better at this because of that? Are there those kind of things? It changed my, it was this complete shift in my gravitational pull and that's word salad language, but I would say like, 35:18 I had a tasty salad. It's a very, it's a lot of salad dressing. it's very, it's, funny how at first, you know, there's always that massive change when you become a parent. That is a huge change. And so I was already like, you know, I was already dealing with that shift in a very challenging way. I mean, after all of this, I was very 35:47 Challenged and like having postpartum depression, but also I was now a disabled mother It was I didn't I had my baby in January I didn't get to I wasn't cleared to like pick her up till April Wow, and so I Spent that you know dialysis every other day essentially for for nine months for nine months in that 36:16 That's like a rotation that is not amazing. you know, it took me, and also I had a ton of medical trauma, right? I had PTSD, but through therapy, antidepressants. Like that year, I was just literally surviving. Literally just trying to survive. But your North Star was your family? Yeah, Or was your daughter? Absolutely, I was like... 36:44 I'm going to, we're going to make this work. We're going to figure out. We didn't know if my kidneys were going to come back. We didn't know so many things and just slowly by, but surely like healing began to occur both mentally and physically. But what, you know, in, in the span of time, I began to, we all, we talk a lot about post traumatic stress, but I don't think we talk enough about post traumatic growth. 37:14 And I think that's also like probably what people talk a lot about on this show is like you go through these, you go through the fire and you are forged into something new. different. But this new thing, like a diamond, I mean, the metaphors played out, but let's just go with it because a diamond is effing strong. Yeah. And beautiful. Yeah. And now in my life. And has flaws. Of course. Of course. 37:43 Well, we're all works in progress, right? I think it is true that you go through these terrible things, but there is another side. And if you can put the sweat equity in, try to like put the mental health piece in, which is so important. Now I spend my life 38:13 You know, I just joke turning lemons into Arnold Palmer's. Like this, all my work now is about trying to take this earth shaking thing and make something productive that is of service. Like that's my mission now. And I wrote a book and I'm trying to get it, you know, into the world. But one of the key parts is that before, 38:41 I had no purpose beyond my own ambition. And now I have so much purpose. And it was hard. I spent a long time trying to go back to the life I used to have. Like there was a period of time when I absolutely tried to do that. But I can't, you don't fit in that square anymore. You don't fit in that shape anymore. No, and it didn't want to fit me either. 39:04 I got laid off. But it was comfortable and that might be why you wanted to go back. Absolutely, but I got laid off six months after going back to work, which is his own life shift moment, after working at a place for 15 years, basically. And so it was like the path chose me to. At least that's the way, that's the narrative I frame in my head, that there is no other option. And... 39:31 And so now I spend a lot of my time, you I wrote the article, which was huge, which is insane. It was the number one article in Apple news. The day dropped like higher than Joe Biden and the NFL, like the weekend before the Superbowl. Right. Yeah. Because it's relatable. People can't relate to the Superbowl. only a certain amount of people that I've played, but like people have gone through medical things and they don't feel comfortable sharing it. 40:00 And it's like, we should be, first of all, for multiple reasons, we should be sharing these stories. For our own growth and for people to see that it's possible to move forward, but also to see, are there systemic issues that could be addressed? Are there protocol like setting up a text chain with a bunch of doctors that could work together to make sure things? 40:26 you know, functioned a little bit. Like, are there things that we should be talking about and not just being like, I had an issue, I'm better now? Well, here's the biggest thing that I say constantly that I'm sure all of my dear friends who like listen to my podcast regularly are like, we get it, Kaufman. But she goes again. Here I go. It is my belief that being a patient is and actually also if you love being a caregiver. 40:56 These are roles that are intrinsically part of the human story. We will all be a patient at some point in some capacity and also a caregiver if we love in some capacity at some point. Now, the spectrum can look different for us all, but the reality is these are all roles that we will play in our life. And we are deeply unprepared for that. Well, we were, mean, 41:26 I don't know what generation you are, but I grew up with this achievement culture. It was very much next achievement, next, I call it a checklist life. We just had to do the next thing on the list. Got my degree, all right, next, get a job, get a promotion, buy a house, do this, do that. And it was never sit in the moment, celebrate, love, focus on those things. 41:50 That wasn't like thing, those are just like byproducts or you know, like whatever happens on the side. Those aren't the things that we talked about out loud. Those weren't the things. And this is just like such a beautiful point of we're all gonna be these two things, no matter where we are in the world, what we do for a career. Those are like the end of the day or the beginning of the day, we're gonna be patients and caregivers at some point. 42:15 Some people, it might look different. Like there's definitely people in the world that are gonna hire someone to be the caregiver, but they're gonna have to coordinate that care. They're gonna have to be the advocate. But I also think too, the one that we really don't escape is being a patient. Yeah. I mean, I guess if, I was gonna say if we're lucky, in a weird way, being a patient because then you can see the care that other people can give or are capable of giving and- 42:44 Like to your point of these doctors like shedding tears for you, who a month prior was a total stranger to them, right? And probably didn't spend a lot of time getting to know you. They knew a lot about your insights and all the other pieces, but yet they cared so much for you and wanting to see you achieve life again and to be you again, that they shed tears over that. Like. Well, I think also too, I. 43:14 And this is something I talk about sometimes as patients. I think it's important that we tell our doctors our stories because it helps them, I think it helps them be better doctors, essentially. You mean like your personal stories? for me, they knew I had just had a baby. They were invested in this. 43:40 life story, even beyond just me as a lady coming to the hospital. You know, they were invested in getting this mother home to her baby. But even if that's not your issue, but there's probably other things in your life that you can that you dream about and hope about and are creating for yourself that, you will inspire and deepen a connection. 44:06 I mean, look, every physician is different. And I actually think there are like about four archetypes of the physicians. Like, I think there's like the robot, there's the ninja, there's the god, and there's the healer. But I think essentially everyone wants to, no matter where you lie in the ego spectrum, they want you to go home and be healthy and live your life. 44:33 But I think when we use storytelling to storytell our condition, our symptoms, I think it's a really powerful tool for us in any capacity, but especially as patients. Surviving something this seemingly insurmountable challenge, Does that instill in you, once you've kind of recovered, your therapy, helped your mental health and all that, does that create something where like, if I could beat 45:03 that or if I could overcome that, I can do anything. Are you that, are you kind of that type of person? honest. Well, it's funny. I think, I think it's, I, you know, I think we are all, you know, what's the saying? We all contain multitudes. There's, there's always going to be the tailor that's like a little afraid I'm not good enough. And, but then there's also- if that's connected to your dad though. Yeah, probably. You're right. That's 1000%, 1000%. That'll always be there. 45:32 So that's there and that was like, well, who do you think you are? And then there's another me that was like, girl, you already did the hardest things you ever have to do. That's Because I bet there's no one that knows you now that's like, no, if she could do that, she can do anything. So people from the outside. But totally the inside, I understand, like your dad leaving, that's total abandonment. And therefore, I'm sure you picked up perfectionist tendencies. 45:56 Tendencies and all sorts of things that come you know, I oh feel like that's probably baked into your DNA as is in mine It's like my mom died but still for an eight-year-old that's abandonment You know my mom abandoned me in that sense Oh for sure and so I took on those things because I didn't want my dad to abandon me You might not have wanted your mom to abandon you or whoever was you know, your caretaker so But I say that because I think all the people that get to talk to you get to see you get to hear your story or like 46:25 She could do anything now, like sky's the limit because she beat something that seemingly so many of us might not have had the opportunity to do. Right place, right time. Like what if that was triggered when you weren't about to give birth and you were out somewhere else, right? You said there was time was of the essence in that situation, right? Yeah, I mean, I think, know, gosh, at least I was like triggering in a medical setting. 46:52 I think a lot of people also trigger, I COVID is a trigger for some people. It's a stress event in the body. So even the flu could be a trigger. And essentially, you know, those folks that aren't in a hospital sending, sometimes they don't even know that they have this because the only, there's only really one symptom or two symptoms. One is nausea and the other is fatigue. And you had both of those, but you were naturally supposed to feel that way. Yes. 47:22 But you were attached to machines like that would alert other people. yes, yes. But my my doctor that operated me, God bless her, she was amazing. But she she had to take off work after saving me. I bet because it was so intense because they were like, where is she bleeding from? What's happening? Like these I think I was so lucky to have the medical team I had for sure. I think and I don't say this lightly, I think if I was somewhere else, I wouldn't 47:51 I wouldn't be talking to you today. And some of my work now, I'm really trying to get awareness out about this disease. I really want to speak to hospitals and alert them about it. there's a lot of great doctors who are publishing articles about treatment. And I think, luckily, of the rare diseases, only 5 % have a treatment. 48:20 So this is one of the 5%. So I was so unlucky and I oddly got very lucky at the same time. So it's like... That's hard to process, It's both... I always, I sort of say I'm the luckiest unlucky girl you'll meet. And now if you were to see me on the street, you would have no idea anything happened to me. Right. I mean, you don't wear it like a badge. 48:46 I mean, I would say I'm your girl that needs a power nap. like, you know, I. But you're not out there like, well, is me. You're more like empowered by it because you want to help other people. right. do think. Look, I no longer have any judgment on what was me. I was well with me for a while. You had to be well with me because that's all the energy I had, because, know, you do kind of I think I think there's a there's a piece in 49:17 chronic illness journey, especially if it's chronic pain or things like that, man is that like debilitating. And the, we just don't have the mental health resources in this country, especially to help people with that. And I think what, you know, we want to go, oh, those people, they just complain all the time. But I, they are incredibly strong. The woe is me folk. 49:44 But I will say, know, again, uh I am very much trying to make this world a better place for all of us. so because of what you went through. Yeah. And I think I always sort of in these series of near death experiences, I definitely and I don't know how is going back to the stuff. Feel like I was sent back with a new assignment. 50:14 And and I you know, I think i'm much more patient with humanity now than I used to be I mean i'm pretty mad about a lot of things don't get me wrong Getting in the election season. Well, it is 2024 So but I spend a lot of time trying to save humanity. So I have a lot of faith and hope for it Does that make it tricky? I think there's a lot of pressure in trying to save humanity. Does that? Is there like I mean, I don't mean it like I 50:42 I could imagine the level of stress that could come with the feeling that you need to help more people. Is that something that you have to tame as well to not trigger another episode of some Well, I think for me, it does feel really dire sometimes. It's like you have this energy and you don't know where to put it. And for me, it's really finding avenues for... Like even just being honest. Like productive Being honest podcast is great. 51:12 way for me to share and help bring my perspective about, you know, like I said about the patient reality, the disease itself and about advocating for yourself and patient empowerment. That's so important. It really stuck out to me as in part of your story of like how that was like another little mini shift within the journey. you're like, get your shit together because I got things to do. Like be a mom. 51:42 So like figure it out. ICU nurses all called me the mama. And I was like, it felt so strange because I'd go, you know, they'd wheel me around the hospital for a test or a scan and they'd go, there's the mama. But it was like, I was doing no mamaing in that time. I was just trying to survive. you know, it's interesting. think, look, the pressure about saving humanity is I realize I'm just one person, you know. 52:12 But I do think we're all like, we're all individual light posts, you know? And together, you you doing this podcast and all the people that you talk to, we're all light posts and together we shine so bright, you know? And we just gotta like do our things and like the article, like it just, it's spread so far. I mean, a million in just a day. mean. Yeah. 52:38 Which is crazy, right? Now everyone knows my personal I couldn't even fathom it at first. And then I was like, I was like, oh, I thought this would just like hide in the corner of the internet. know? Lots of things to No, but it definitely didn't. And... Did that lighten your load a little bit when you realized so many people had read it? Or did it make it It was also another life shift. I think for me, it was another life shift. Because then all of sudden, a couple things. 53:07 I think, and this is a good question, maybe a whole nother podcast about sharing your medical, disclosing that in a world where people need to hire you, in a world where people, you're trying to work. I do think it's been interesting. It's another reality of I can't go back again. It's like it did so well. 53:36 Like the universe is pushing me. It's like, no, no, you don't get to that job again. No, no, no, you can't go hide. No, no, no, you are, this is the direction you're going to go. Yeah. It's like a nice confirmation of the world was like, yeah, you should be sharing your story and we're going to prove it. I know, I know. But I feel both very, very actively part of this process, but also feel very, the best way can describe it is I feel like 54:04 It's like the flow of water down from the mountain into the ocean. Like, I'm not like pushing something up a hill. I'm just like doing the next thing. I'm carving through rocks and I am doing something hard, but I'm going with a certain flow. Yeah. But it's your own flow, right? It's a flow that this version of your life brings to you. I don't know. I still think there's an uphill battle. I mean, there's an uphill flow at some points, I would imagine. 54:33 that you have to push through or that rock is in the way, like you said, and you have to keep gnawing at it or breaking it down so that you can get through. I mean, life's not gonna be any easier because you've gone through this, right? It's gonna be harder in some cases and maybe your passion and your North Star and stuff pull you a little bit more. I would give yourself a little bit I do think some things are easier than they were before. 55:00 And what I would say, and I know that sounds strange. Gratitude, like you said. Gratitude, but also like, I do not sweat certain things anymore. Because you realize they don't really matter. Yeah. Or you couldn't control them. But that, I also just attribute it back to like your childhood pieces. Like a lot of those things we worry about things because we weren't going to be good enough. Therefore other things were going to happen. And now seeing this, you're like, none of that shit mattered. 55:30 At all? I know. None of it. What's the biggest difference between you and you now and you before? I'm like no longer an innocent little flower just bouncing around my life, you know? I also didn't know how tough I was. Yeah. Both physically and mentally. I bet mentally was even harder. Oh yeah, for sure. 55:59 And I went through some like, creep. even in that time in the hospital, there wasn't just one time I was trapped inside my body, essentially. Like it happened again later on. I, you know, it was almost worse the second time. And I just, you know, made it through. I made it through. And I think it showed me the capacity for us to be able to pass through a challenge. 56:29 I think what it does for me is I think I like, I do love humanity more. And maybe that's part of it. Cause I can see how much we can endure and pass through. And it's astounding to me. I mean, mind blowing hearing your story from someone that hasn't experienced something like that. Here's a really terrible question. So get ready for it. Do you think... 56:57 If you had gone through that experience and not been triggered by giving birth to a child, but like it was just triggered by something else, do you think that you, your body, your spirit and all that stuff would have fought as hard? I've thought about that actually. And I actually don't know. Yeah. I think of these things all the time and it's so terrible because I'm like, oh, here's an example. I'll be watching a movie, like an apocalyptic kind of movie and people are like, 57:26 fighting so hard to exist or escape the monsters. I'm like, would I just give up on day one? I don't know. And so it's just a curious question because you had this light that you had to run to. You had to get to your husband and your daughter and you had to do, that was there. And so part of me is like, well, what if that wasn't there? Would you go? I think about that too. It feels like those sliding doors moment in that movie. 57:55 Like if I had triggered this at a different point, in a different way without her, I do not know. I do not know. Yeah, because the previous version of your life, weren't you? You were just kind of like... Yeah. Whereas like I was like... And you know, it was interesting. She would come to visit me. The hospital, thank goodness, man. They let her come and visit me every once in a while. 58:24 And it was like this charging of a battery. It's not the best way I could describe it. She, I was in a ton of pain. I'd had four abdominal surgeries amidst everything else. I was in so much pain and she would come and be with me. I would feel like no pain when she was with me. And it would re-energize that light to fight. 58:50 Yeah, absolutely, absolutely. And she, there was one point where I didn't get to see her for a week and it was just excruciating. And I was just like, I have got to get home. I have got to get out of here. I would just, I would show her picture to every medical professional. I was like, this is my baby. This is where I to go. This is where I'm going. I want to remind you, this is where we're going. There's no other options. 59:19 This is, mean, your story is just so inspiring and it just shows us, like you said, the capacity that we have as humans to overcome and to move through and to survive things like this. think it's just so important that we talk about these things in hard ways, in easy ways, like however we need to that makes us feel better and helps other people. So thank you for doing that. I think it's just so valuable how your goal to help other people and kind of just make it 59:48 more known and make it more normal. The only like really last important point I think I would love to make is just that. Like I think you see sometimes I remember before all this, when I'd see someone like me, I'd just be like, whoa, you know, but but what's I really think if I can go through all of this. And find like, OK, is like my new religion, right? Like. 01:00:16 find this place of okayness and acceptance and, you know, joy even and all those things. Like if I can move through this and do it, I mean, I think everyone can. And it may not look obviously the same, but that's like something I really want to tell people is that you can face the worst things and there can be another side and to not get lost and just keep going through. 01:00:46 One step at a time, one day at a time, one hour at a time, one minute at a time, however you need to take it to move through it. That's right. If you could go like what you know now, if you could go back to Taylor entering that hospital that day, is there anything you would want to tell that version of you? Oh my God, I don't even know how I could even explain what's about to happen to me. I think I would just say like, it's going to be okay. Yeah, and you'd be like what? And I'd be like, oh God. 01:01:16 Yeah, of course it's going to be okay. Like everyone does. But it's insane how the path was to okay. But 01:01:26 You know, here we are. Yeah. I love that. I love that last point of saying like you found like you're good in the okayness, like you found the okayness of your life and you've made it to the other side. Of course, there's still battle. There's still battles that you're fighting. There's still things that you're going to be challenged with and that. But now you know how to attack them differently because of this experience. So thank you for just being you sharing it, talking in this weird way that I call the Life Shift podcast. I think it's just so 01:01:55 healing for that little eight-year-old version of me that I carry with me, just to hear these stories and know that there's such humanity and compassion and vulnerability out there doing the things that you're doing. So just thank you for that. Well, I know our eight-year-old selves are very proud of us. I hope so. I bring them along now. I'm just like, dude, you needed a hug. You needed a friend. You needed someone to just say things are going to be OK. You would have told that version of you walking into that hospital. That's right. 01:02:24 If people want to find you, get in your space, connect with you, tell you their story, what's the best way to find you? Yeah, please come find me. I have a sub stack called Rare Disease Girl. I write very candidly about my journey, but also practical tips. I sort of call it a digital atlas for folks going through a life earthquake, especially a medical one. And then I also very sherry on Instagram and TikTok. 01:02:53 Taylor Kaufman made, come follow me. I'll probably follow you back. Come join me. I encourage you, if you're listening and you want to connect with Taylor, please do share your story with her. I think she would love that as well. And maybe she wouldn't, but too bad. What I would love is if you're listening to this episode and there's someone in your life that might need to hear it, share this episode with them. Because I think that's how we do it. We're the light posts. We're helping. 01:03:22 light the way for these other people. So we would love that. With that, I think I'm going to say goodbye and I'll be back next week with a brand new episode of the LifeShift Podcast. So thank you, Taylor. Thank you. Her dog is barking. No worries. know, my dog, of course. She's like, are you done? you done? I'm ready to bark at the neighbors. 01:03:53 For more information, please visit www.thelifeshiftpodcast.com.