Shownotes
Taylor Coffman's experience of giving birth was marred by a sudden medical emergency that thrust her into a fight for survival. After a seemingly normal pregnancy, the birth of her daughter resulted in an unforeseen diagnosis of atypical hemolytic uremic syndrome. This rare condition led to a rapid decline in her health, including kidney failure and the need for dialysis. The episode captures the raw emotions associated with motherhood, the fear of the unknown, and the profound impact of medical crises on family dynamics. Taylor's narrative is not just about survival but the transformative journey that emerges from such a crisis.
Throughout her ordeal, Taylor was in a position that tested her strength and resolve. She shares her insights about the healthcare system, the importance of patient advocacy, and the role of emotional support from loved ones during dire circumstances. Taylor emphasizes recognizing and addressing one's needs during a health crisis. Her story is a testament to the human spirit's ability to endure and adapt, ultimately leading her to become a patient advocate, helping others navigate their medical challenges with the strength she found within herself.
Takeaways:
- Taylor Coffman's journey through a life-threatening crisis began unexpectedly during childbirth.
- The importance of self-advocacy in healthcare can significantly impact patient outcomes and experiences.
- Taylor's story highlights the necessity of having a supportive partner in medical emergencies.
- Sharing personal medical experiences fosters community and helps others feel less isolated in their struggles.
After a career in acting and media, everything in Taylor Coffman's life changed during the birth of her daughter. Her delivery triggered atypical Hemolytic Uremic Syndrome, leaving Taylor near death with multiple organ failure. Defying all odds, her survival experience inspired her to work as a patient advocate, empowering others with their life-changing diagnoses.
Connect with Taylor on Instagram: @taylorcoffmanmade
Read more from Taylor on Substack: Rare Disease Girl - https://taylorcoffman.substack.com/
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Transcripts
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.
We actually didn't know if it was a boy or girl, so it was a real surprise moment to hear we had a girl we chose not to know. 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.
And I have one nurse with me, and I'm starting to set off alarms. 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 then they just rushed me. And it was kind of amazing, this one doctor.
It's almost like it worked. It was on her phone. She scanned over my abdomen, and you just saw my husband explained it.
They just all, like, rush to me and pull me out of the room into a separate area to operate on me.
Matt Gilhooly: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 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. This led to multiple organ failures, among other challenges.
Taylor 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, itll be clear how Taylors experience inspired her to become a patient advocate, connecting with others and fostering a sense of community in some of lifes 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 Kaufmande. I'm Matt Gilhooly, and this is the life shift candid conversations about the pivotal moments that have changed lives forever. Hello, my friends.
Welcome to the Life Shift podcast. I am here with Taylor. Hello Taylor.
Taylor Coffman:Hi, Matt.
Matt Gilhooly:How are you today?
Taylor Coffman:It's great. It's really warm where I am, so I am melting a tad, but it's great. It's a great week starting school. My little one's in preschool, so first week.
It's really special, actually.
Matt Gilhooly:That's awesome. Well, congratulations for having a little bit more time to yourself. Maybe with the kid at school, it.
Taylor Coffman:Somehow gets filled up with other things.
Matt Gilhooly:Yes, yes. I'm sure many people can understand that, so.
Well, thank you for wanting to come onto the life Shift 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 know, my goal really is to help people feel less alone in their circumstance just by hearing other people's stories. So thank you for just wanting to be a part of it.
Taylor Coffman:Yeah, absolutely. Absolutely.
I think 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.
Matt Gilhooly:Oh, for sure. And we were talking before recording of how, like, I 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 forties that it's kind of strength showing up?
Taylor Coffman: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.
Matt Gilhooly:Do you find that each time you tell it, you feel a little bit freer with it or you're able to tell it in different ways that feel more comfortable to you?
Taylor Coffman:Well, it's interesting, there's a really great quote by, and I always pronounce her name wrong, but I 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. Every time I've told this story, it comes from a newer, fresher version of me, you know?
And so it's interesting how I think, you know, what happened to me was, you know, profoundly life shaking. But in my reflection of it, you know, I think the story shifts. Even the facts are the same, obviously.
Matt Gilhooly:But I can agree with that because the life shift podcast, for me, if you're brand new listening and just for you, the show, it started as a class assignment. I actually took a second master's degree during the pandemic because I was bored.
And I took a podcasting class, and I was like, oh, what am I going to 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.
Live states apartheid. 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, and they wanted to see that I was going to 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, 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 a 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.
Taylor Coffman: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 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 pulling out from the moment, and I'll just get into it.
Matt Gilhooly:Cause I feel like working around, walking around the bush. Yeah. Yeah.
Taylor Coffman: ly, before, I would say, even:And I, you know, had a really great life, and it was time for me and my, my husband of a couple years to try to have a family. And, you know, we, after maybe a series of a year or so, we got pregnant, and I had a very normal pregnancy. Worked through all my pregnancy.
Nothing flagged.
Matt Gilhooly:Seemingly normal.
Taylor Coffman:Very normal. Like, you know, they. I really had good prenatal care.
I always preface that with this because I think a lot of people wonder if we just miss 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 induction, so it took as many moms and papas out there. No, it takes a few days.
And eventually they suggest I go in for a c section because I wasn't progressing. And she, 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 the c section. It's that sort of beautiful moment, very surrendering moment. She's like this blur of pink, like, across the room.
We actually didn't know if it was a boy or a girl, so it was a real surprise moment to hear we had 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. And I have one nurse with me, and I'm starting to set off alarms.
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.
Matt Gilhooly:Because you were mostly probably numb in some capacity.
Taylor Coffman: night. It was like, you know,: Matt Gilhooly:Of days had been. You've been trying to get to, I.
Taylor Coffman:Hadn'T slept at all, and 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 pull me out of the room into a separate area to operate on me.
I had, like, a moment to just grab his hand and say, I love you, because we knew something terrible was happening. I had no idea what, but I knew it was bad.
Matt Gilhooly:And you weren't feeling anything? You were just basing this off of all the reactions around you?
Taylor Coffman:Yeah, yeah, yeah. It was really, like. Just imagine in these circumstances, seeing everyone panicked.
Matt Gilhooly:Well, especially people that are used to seeing so much tragedy, right. So to then see them panic, it was sad. I.
Taylor Coffman: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, at one point find the baby and me. Like, she was at the NICU.
They were checking her out, making sure she was okay. He wasn't sure where I was, and I was being rushed to the ICU because I was essentially hemorrhaging, I was bleeding.
They could not figure out from where. And all of a sudden, just, like, total kidney failure, they had a throw me on dialysis, constant dialysis. All of a sudden, just.
Everything started going wrong.
Matt Gilhooly:Your body was just, like, shutting down.
Taylor Coffman:Yeah. Yeah. And it's. It's so interesting. In that time, they managed to stabilize me with the dialysis and. And different things, and 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.
Matt Gilhooly:That's frightening, you know, you. Because they probably think you're out, too.
Taylor Coffman:Oh, yeah. So they're saying it's very scary, too.
I 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, 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?
Matt Gilhooly:Like, I saw this on a movie once.
Taylor Coffman:I know, right? Right.
Matt Gilhooly:Yeah. Oh, that's frightening.
Taylor Coffman:And I can laugh about it now, but it was. It was truly, truly insane. And, you know, I. I also felt like sometimes I wasn't sure what was a dream and what was not.
You know, I had 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 a dream, but who knows?
Just sitting outside of myself, like, watching myself on a table. My gosh, like, being operated on.
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.
Matt Gilhooly:That's so interesting.
Taylor Coffman:It was so crazy.
Matt Gilhooly:Yeah. How long was this time period? Like, from the time you gave birth to, like, all these events that are happening?
Taylor Coffman: urky for me, but I had her at: Matt Gilhooly:Or maybe it was a while.
Taylor Coffman:Maybe even Saturday. Like, it was a long time.
Matt Gilhooly:Yeah. And this whole time, was that.
In what you can recollect, is that, like, when you were hearing, was that most of that time, or was that just a segment of it? Okay.
Taylor Coffman:It was like, pockets. Cause 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 were. I even had an anesthesia come.
Matt Gilhooly:So you freaked them out?
Taylor Coffman:Oh, yeah. They were like, okay. But thankfully, I did wake up, but I still didn't get to meet my baby.
Cause pretty much by the time I woke up, it was, like, Saturday morning. They basically decided to take me back for another surgery.
Matt Gilhooly:Essentially, after you woke up, they're like, we're gonna push you back out.
Taylor Coffman: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 I'm also being ventilated and all that stuff. So this is, like, a second, like, round of ventilation. And then finally on Sunday, I.
Because that whole time, even when I woke up, I was like, where's my baby? Like, where is she? Like, when do I get to meet her?
Matt Gilhooly:How long have I been out?
Taylor Coffman:Like, I know. Yeah. Yeah. I mean, it was the. It was, like, my number one question, like, where. Where is she?
And I remember, my delivery doctor brought me her little hat so I could have her hat.
Matt Gilhooly:But why couldn't you see her? Is it just because you were too sick, too, like.
Taylor Coffman:Yeah, it was dire for me. I mean, basically, I was, like, in the most intensive care at that point.
Matt Gilhooly:And they didn't want, like, any kind of extra infection or something that could come along with seeing anyone.
Taylor Coffman:You know, it's tough to know exactly. I 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 popemobile into the ICU. She's in this huge wagon.
Matt Gilhooly:So you just really just got to see her.
Taylor Coffman: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, 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.
Matt Gilhooly:Right, because you didn't have any. Did you have any answers or. They were still in this mode of.
Taylor Coffman:Like, there was a bit of a debate, I think. I think if you were going to 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, what was happening inside my body was truly very multidisciplinary, where essentially speaking now, in retrospect, we know.
And if I jump into medical jarden, 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, whoa, what's going on there? And platelets, I try to explain. I'm sort of the construction workers of your.
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.
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.
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, 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.
And it was attacking my own body 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 microangiopathy, 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 attacked small blood vessels, but they also move and clump. So I ended up. I've had a heart attack.
I 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 encylopathy.
So it was the waterfall of issues from this birth that just awoke this rare disease, which.
Matt Gilhooly:So was something dormant, possibly.
Taylor Coffman:You know what's interesting? You could call it dormant 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. But it might wash over you like waiter giving you the salad dressings. So it has almost two names.
The first one is atypical hemolytic uremic syndrome. And the second name would be pregnancy induced complement mediated thrombotic microangiopathy, or microangiopathy. I know.
Matt Gilhooly:Does it have an acronym?
Taylor Coffman:It's not sexy. No. But I wanted to. So I'm gonna start one right here. We're gonna call it TMA or ahus or TMA. So it's a mess. It's a mess.
When you have a rare disease like this, sometimes there's a lot of debate about, like, what to call it.
Matt Gilhooly:Is there? I mean, is this something that people in the world have seen before or is this complicated? Okay.
Taylor Coffman: I would say there's about: Matt Gilhooly:Okay.
Taylor Coffman: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 there is, thankfully, a treatment. But that treatment, if you don't get it early enough, the outcomes are not great.
Matt Gilhooly: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.
Taylor Coffman:No, it's. There's no cure. There's no cure, sadly. So I will. You know, it's interesting. I think some people never have a problem ever again.
They can go off med, and they just. 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. And I think I basically take what's similar to a maintenance chemo, essentially every eight weeks to make sure my body just doesn't try to murder me.
Matt Gilhooly:I mean, how. Just thinking about, like, how fortunate to be in a space where people were able to help you, you know, like. I mean, I can't imagine.
Like, that's almost like a right place, right time, although terrible to know that there were people around and your husband being, like, research and deciding. I mean, all those pieces had to come together to make sure that it didn't.
Taylor Coffman:That's correct. I think.
Matt Gilhooly:Take you out.
Taylor Coffman: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.
Matt Gilhooly:It's fast.
Taylor Coffman:It's very fast. And so the damage that disease caused then created other problems. So, you know, I then had to deal with, for example, I previewed it before.
I now had heart failure. I now had kidney failure. I now had lungs.
Matt Gilhooly:So those were all just effects of.
Taylor Coffman: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.
At one point, because of kidney failure, my body was poisoning my brain with my own toxins so I could.
Matt Gilhooly:That's not very nice.
Taylor Coffman:So I got aphasia, so I couldn't speak anymore, and I couldn't, you know, luckily, like, that was days, not. I mean, get urema, you die. You know, essentially, your brain's being poisoned. But it was.
It basically, this one 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. 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.
Matt Gilhooly:Yeah. I was gonna ask how, like, what you attribute surviving that to.
Taylor Coffman:Well, I would say that it was the marriage of. Well, one, I will always say I was a healthy person, I think, before all of this happened.
Matt Gilhooly:Yeah. So you had no medical issues?
Taylor Coffman: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 gonna make it. Some of those doctors were like, we just.
We didn't think Kopla was gonna make it out of there. They would joke about it after to me, which I always found kind of.
Matt Gilhooly:Crazy, but, I mean, you are kind of. Like you said, it's kind of a miracle, in a sense, of all these things coming together that you. Your body was strong enough to.
Taylor Coffman:Well, and it was not linear. Three weeks in, I was in a coma, basically. I wasn't getting enough oxygen to my brain at one point, and it was so bad, they put me in a coma.
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 gonna 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, I mean, I wasn't aware of him. I looked half.
I was like, basically, I looked dead, you know? But I woke up again. When I woke up from that coma.
Matt Gilhooly:Yeah. What is that? Like?
Taylor Coffman: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 that I.
At that point, my doctors had so many doctors. This is sort of when I started writing the article. I wrote this article about a. I wrote it about a year ago.
It 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, and, 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. I don't know. I just had. I just had no more.
Like, I just did not have it in me to be polite at this point.
Matt Gilhooly:No more f's to give.
Taylor Coffman:I had no more. You wanted to say, yes, I did. I did. I had no more f's to give. I had to get home to my baby. Like, she was like, my north Star.
I was like, I have got to get home to her. And I just started to call it out. I was like, it feels disorganized, you know, I just need you to get it together, because I'm not getting better.
Because at this point, I also had sex 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 combat these different pieces and strategize.
Matt Gilhooly:Without affecting the other piece.
Taylor Coffman: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 to see me back awake.
I saw a few of them actually tear up. 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. Still was ups and downs, but I did.
Ultimately, I was on my road to recovery, generally speaking.
Matt Gilhooly:So, really advocating for yourself in the no f's left to give. Moment of this journey was a trigger to more progress, maybe in a way, or eventual progress.
Taylor Coffman:I think for me, I was truly. I think there's a lot of debate about using fight terminology when it comes to illness, but I was fighting for my life. Absolutely.
Matt Gilhooly:At that point, did you feel like you were actively part of the fight?
Taylor Coffman:Yes. Yes.
Matt Gilhooly:That's good.
Taylor Coffman: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.
Matt Gilhooly:Is this part. Was that part of your. Your life? Like, was there a spiritual element of your life?
Taylor Coffman:Way more religious element, way more spiritual now than I was before? Cause I also, too, I feel like I had 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. I felt. And, you know, I sort of joke sometimes it's hard to know whether it's ICU.
Like, they have psychosis because you're on so much meds and you're not sleeping well, but for whatever. Whatever. It was like, I felt like there was the presence of God in that space, and I believe now, actually more so, a collective consciousness.
So I was like, I knew I was talking to somebody. I didn't know exactly who I was talking to, but they knew I wasn't going. They knew.
Matt Gilhooly:Well, I feel like that's part of, like. I mean, I think at the end of the day, I think that's what everyone does, right? I think you.
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. But 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.
Because, like, someone, I 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 kind 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, like, I felt like.
I feel like so much of my life, I was just kind of just, like, going through the motions.
Taylor Coffman:Absolutely.
Matt Gilhooly:And not really tied into anything.
Taylor Coffman:Absolutely.
Matt Gilhooly: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 enjoy each moment. Now, is that true for you? Do you feel like I got to live every moment?
Taylor Coffman:Well, like I said this week, she's two and a half now. This is how it happened, began two and a half years ago.
And I talk about she's going to preschool, and I talk about these moments, and this is what I call happy ever after moments. You know, 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. 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.
Matt Gilhooly:Yeah. And then it's very hard to look back on your moment or your 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.
Taylor Coffman:Do you see it's changed everything.
Matt Gilhooly:Do you see benefit? Do you see, like, not benefit? Do you see, like, a. Like, I've become better at this because of that? Are there those kind of things?
Taylor Coffman:It changed my. It was a complete shift in my gravitational pull. And that's a. That's word salad language. But I would say, like, I had a tasty salad. It's a very.
It's a lot of salad dressing. Like, it's very. 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 challenged in, 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.
Matt Gilhooly:Wow.
Taylor Coffman:And so I spent that, you know, in dialysis every other day, essentially for.
Matt Gilhooly:For nine months.
Taylor Coffman:For nine months. And that's like a rotation that is not amazing. And 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.
Matt Gilhooly:But your North Star was your family.
Taylor Coffman:Yeah, absolutely. Absolutely. I was like, 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 but surely, like, healing began to occur, both mentally and physically. But what, you know, 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.
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, totally 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 and beautiful and now in my life, and.
Matt Gilhooly:Has flaws, of course.
Taylor Coffman:Of course. Well, we're all works in progress, right? Right. But 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, you know, I just joke turning lemons into Arnold Palmers 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, 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.
Matt Gilhooly:You don't fit in that square anymore. You don't fit in that shape anymore.
Taylor Coffman:No. And it didn't want to fit me either.
Matt Gilhooly:I got laid off, but it was comfortable. And that might be why we wanted to go back, right? Absolutely.
Taylor Coffman:But I got laid off six months after going back to work, which is his own. It's his own life shift moment after working at a place for 15 years, basically. And so it was like the path chose me, too. At least that's the way.
That's the narrative I frame in my head that there is no other option. And so now I spend a lot of my time. I wrote the article, which is insane.
It was the number one article in Apple News the day it dropped higher than Joe Biden in the NFL the weekend before the Super bowl.
Matt Gilhooly:Right? Yeah, because it's relatable. People can't relate to the Super bowl. There's only a certain amount of people that ever played.
But, like, people have gone through medical things and they don't feel comfortable sharing it.
Taylor Coffman:Yes.
Matt Gilhooly:And it's not, you know, and it's like we should be, first of all, for multiple reasons, we should be sharing these stories, you know, like, for our own growth and for people to see that. Like, 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 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.
Taylor Coffman:Well, here's the biggest thing that I say constantly that I'm sure all of my dear friends who listen to my podcast regularly are like, we get it, Kaufman.
Matt Gilhooly:There she goes again.
Taylor Coffman:Here I go. It is my belief that being a patient is.
And actually also, if you love being a caregiver, 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.
Matt Gilhooly:Well, we were. I mean, I don't know what generation you are, but I grew up with this, like, achievement culture. Sure.
It was very much, you know, like, next achievement. Next. I call it checklist life. Like, 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, like, sit in the moment, celebrate love. Like, focus on those things. Like, 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 going to 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.
Taylor Coffman:I mean, I think 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.
Matt Gilhooly:Yeah, I mean, I guess if.
I was gonna say if we're lucky, but in a weird way, being a patient, because then you can see the care that other people can give, are capable of giving. And, 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 insides 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.
Taylor Coffman:Like, well, I think also, too, I. And this is something I talk about sometimes as patients, we. 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.
Matt Gilhooly:Like, they mean, like, your personal life story.
Taylor Coffman:Okay. For me, they knew I had just had a baby. Like, they were invested in this 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 know, will inspire and deepen a connection. 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, but 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 on the ego spectrum, they want you to go home and be healthy and live your life.
But I think when we use storytelling to storyteller condition our symptoms, I think it's a really powerful tool for us in any capacity.
Matt Gilhooly:But especially as patients surviving something, this seemingly insurmountable challenge. Right. Does that instill in you once you've kind of recovered, done your therapy, helped your mental health and all that?
Does that create something where, like, if I could beat that or if I could overcome that, I can do anything? Are you that. Are you kind of that type of person? Be honest.
Taylor Coffman:Well, it's funny. I think. I think it's, you know, I think we are all, you know, what's the saying, we all contain multitudes.
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.
Matt Gilhooly:I wonder if that's connected to your dad, though.
Taylor Coffman: probably you're right. That's: Matt Gilhooly:That'll always be there.
Taylor Coffman:So that's there and that, like, oh, well, who do you think you are? Then there's another me that was like, girl, you already did the hardest things you ever have to do.
Matt Gilhooly:True. Because I bet there's no one that knows you now. That's like, 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 tendon tendencies and all sorts of things that come, you know, so I feel like that's just 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.
Taylor Coffman:Oh, for sure.
Matt Gilhooly: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 are like, 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?
Taylor Coffman:Yeah. I mean, I think, you know, gosh, at least I was, like, triggering in a medical setting. I think a lot of people also trigger.
I mean, Covid is a trigger for some people, just. It's a stress event in the body, so even the flu could be a trigger.
And essentially, like, you know, those folks that aren't in a hospital sending, sometimes they don't even know that they have this because there's only really one symptom or two symptoms. One is nausea and the other's fatigue.
Matt Gilhooly:And you had both of those, but you were naturally supposed to feel that way, right? Exactly. Yes, but you were attached to machines like that would alert other people, so.
Taylor Coffman:Yes, yes. But my doctor that operated me, God bless her, she was amazing. But she had to take off work after saving me.
Matt Gilhooly:I bet.
Taylor Coffman:Because it was so intense, because they were like, where is she bleeding from? What's happening? 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 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.
And 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. So this is one of the 5%. So I was so unlucky, and I oddly got very lucky at the same time.
Matt Gilhooly:So it's like, that's hard to process.
Taylor Coffman:It's both. I always. I sort of say I'm the lucky, 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?
Matt Gilhooly:I mean, you don't wear it like a. A badge.
Taylor Coffman:I mean, I would say I'm your girl that needs a power nap. I'm like, you know, I.
Matt Gilhooly:But you're not out there, like, woe is me. You're more, like, empowered by it because you want to help other people through it.
Taylor Coffman:I do think. Look, I no longer have any judgment on woe is me. I was. Woe is me for a while. You know, I had to be woe was me because that's all the energy I had.
Because you do kind of. I think there's a piece in the chronic illness journey, especially if it's chronic pain or things like that. Man, is that debilitating.
And 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. Those people, they just complain all the time, but I. They are incredibly strong. The woe is me folk.
Matt Gilhooly:But I will say, oh, yeah.
Taylor Coffman:You know, again, I am very much trying to make this world a better place for all of us. And so.
Matt Gilhooly:Because of what you went through.
Taylor Coffman:Yeah. And I think I always sort of. I know in these series of near death experiences, I definitely.
And I don't know how going back to the woo woo stuff feel like I was sent back with a new assignment, and 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.
election season, well, it is: Matt Gilhooly: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 could imagine the level of stress that could come with the feeling that you need to help more people. Is that something that, like, you have to tame as well to not trigger other, like another episode of something?
Taylor Coffman:Well, I think for me, it does feel really dire sometimes. Like, I just, it's like you have this energy and you don't know where to put it.
And for me, it's like, really finding avenues for, like, even just being on this, like, predictive podcast is a great way for me to share and help bring my perspective about, you know, like I said about the patient reality, about. About the disease itself and about advocating for yourself and patient empowerment.
Matt Gilhooly:That advocation, I think that's so important.
Like, it really stuck out to me in part of your story of how that was another little mini shift within the journey, because you're like, get your shit together. Because I got things to do, like be a mom, so figure it out.
Taylor Coffman:The ICU nurses all called me the mama, and I was like, it felt so strange because I'd go, 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 mama Ingae in that time. I was just trying to survive. But, you know, on.
It's interesting, I think, look, the pressure about saving humanity is, I realize I'm just one person, but I do think we're all like, we're all individual light posts, and together you doing this podcast and all the people that you talk to, we're all light posts, and together we shine so brighten, you know, and we just gotta, like, do our things and, and, like, the article, like, it just, it spread so far. I mean, a million in just a day. I mean, yeah, I couldn't even now.
Matt Gilhooly:Everyone knows my personal story.
Taylor Coffman:I couldn't fathom it at first.
And, and then I was like, I was like, oh, I thought this would just, like, hide in the corner of the Internet, you know, lots of things, but it definitely didn't.
Matt Gilhooly:And did that lighten your load a little bit when you realized so many people had read it, or did it make it?
Taylor Coffman:It was also another life shift. I think for me it was another life shift because then all of a sudden, a couple things I think. And this is a good question. A whole.
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, like, you know, you're trying to work, and, like, I do think, like, you know, it was. It's been interesting. Like, it's another reality of, like, I can't go back again. Like, it's like. It's like, it did so well.
Like, the universe is weird, is pushing me. It's like, no, no, you don't get to have that job again. No, no, no. You can't go hide. No, no, no. You are. This is the direction you're gonna go.
Matt Gilhooly:Yeah. It's like a nice confirmation of the world was like, yeah, you should be sharing your story, and we're gonna prove it.
Taylor Coffman:I know, I know. But I feel both very. I'm very actively part of this process, but also feel very.
The best way I can describe it is I feel like 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 rockstar, and I am doing something hard, but I'm going with a certain flow.
Matt Gilhooly:Yeah. You know, but it's your own flow, right? It's a flow that. That this version of your life brings to you. I don't know. I.
I still think there's an uphill battle that.
I mean, there's an uphill flow at some points, I would imagine 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, you know, breaking it down so that you can get through. I mean, life's not going to 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. But I. You know, I would give yourself a little.
Taylor Coffman:I do think there's some things are easier than they were before. And what I would say, and I know that sounds strange.
Matt Gilhooly:Gratitude.
Taylor Coffman:Like, gratitude, but also, like, I do not sweat to certain things anymore.
Matt Gilhooly:Cause you realize they don't really matter.
Taylor Coffman:Yeah.
Matt Gilhooly:Or you couldn't control them, but that I also just attribute it back to your childhood pieces. A lot of those things, we worry about things because we weren't gonna be good enough, therefore, other things were gonna happen.
And now seeing this, you're, like, none of that shit mattered at all.
Taylor Coffman:No, none of it.
Matt Gilhooly:What's the biggest difference between you and you now and you before?
Taylor Coffman:Oh, I'm, like, no longer an innocent little flower just bouncing around my life. You know, I, like, I also didn't know how tough I was.
Matt Gilhooly:Yeah.
Taylor Coffman:That's both physically and mentally.
Matt Gilhooly:I bet mentally was even harder.
Taylor Coffman:Oh, yeah, for sure. And I went through some, like, crazy. I mean, even in that time in the hospital, there wasn't just one time. I was trapped inside my body, essentially.
It happened again later on, and I was almost worse the second time. And I just made it through. I made it through. And I think it showed me the capacity for us to be able to pass through challenge.
And it doesn't mean that, you know, I think, well, let me go back and rephrase this.
I think what it does for me is I think I, like, I do love humanity more, and maybe that's part of it, because I can see how much we can endure and pass through. And it's. It's astounding to me.
Matt Gilhooly:It's. I mean, mind blowing hearing your story from someone that hasn't experienced something like that. Here's a.
Here's a really terrible question, so get ready for it.
Do you think 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?
Taylor Coffman:I. You know, that's. I've thought about that, actually, and I actually don't know.
Matt Gilhooly: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, fighting so hard to exist or escape the monsters.
I'm like, would I just give up on day one? I don't know. You know? And so it's just a curious question because you had this, like, light that you had to run to.
Like, you had to get to your husband and your daughter, and you had to do, you know, you. That that was there. And so part of me is like, well, what if that wasn't there? Would you go?
Taylor Coffman:I think about that, too. It feels like those sliding doors moments in that movie. Like. Like, if I had triggered this at a different point, in a different way without.
Without her. I do not know. I do not know.
Matt Gilhooly:Yeah, because the previous version of your life, weren't you. You were just kind of like, yeah, yeah.
Taylor Coffman: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, and it was like this charging of a battery. So 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.
Matt Gilhooly:And it would re energize that light to fight.
Taylor Coffman: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 show her picture to every medical professional. I was like, this is my baby.
Matt Gilhooly:This is where I need to go, right?
Taylor Coffman:This is where I'm going. I want to remind you, this is where we're going. There's no other options.
Matt Gilhooly:This is.
I 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.
I 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 that 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 more known and make it more normal.
Taylor Coffman:The only really last important point I think I would love to make is just that. I think, you see, sometimes, I remember before all this, when I'd see someone like me, I'd just be like, whoa.
But I really think if I can go through all of this and find, okay. Is my new religion, right. 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.
Matt Gilhooly:One step at a time, one day at a time, 1 hour at a time, 1 minute at a time, however you need to take it to move through it.
Taylor Coffman:That's right.
Matt Gilhooly: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?
Taylor Coffman: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 gonna be okay.
Matt Gilhooly:Yeah. And you'd be like, what?
Taylor Coffman:And I'd be like, oh, God, yeah, of course it's gonna be okay. What? Like, everyone does. Yeah, it's insane how the path was to okay, but, you know, here we are. Yeah, here we are.
Matt Gilhooly:No, I love that last point of saying, like, you found, like, you're good in the okayness. Like, you found the okayness, like, of your life, and, you know, 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, 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 healing for that little eight year old version of me that I carry with me just to hear these stories and, you know, 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.
Taylor Coffman:Well, I know our eight year old selves are very proud of us.
Matt Gilhooly:I hope so. I bring them along now. You know, I'm just like, dude, you need. You needed a hug. You needed a friend.
You needed someone to just say things are gonna be okay. Like, you would have told that version of you walking into that hospital.
Taylor Coffman:That's right.
Matt Gilhooly:If people want to find you, get in your space, connect with you, tell you their story, what's the best way to, like, find you?
Taylor Coffman: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 like a digital atlas for folks going through a life earthquake, you know, especially a medical one. And then I, you know, I also very sherry on Instagram and, you know, TikTok Taylor Kaufman made. Come, come follow me. I'll probably follow you back.
Like, come join me and we'll, you know, like, I think you can kind of see also too, like, my friends is so funny.
I just spent a lot of weeks traveling, and my friends go, well, like, a lot of people just see a happy lad on vacation, but we know what these things really mean. Like, this is, again, happy ever after.
Matt Gilhooly:No, 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.
And 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 light the way for these other people. So we would love that.
And with that, I think I'm going to say goodbye. And I'll be back next week with a brand new episode of the Life Shift podcast. So thank you, Taylor.
Taylor Coffman:Thank you.
Matt Gilhooly:Her dog is barking.
Taylor Coffman:I know my dog, of course. She's like, are you done? Are you done? I'm ready to bark at the neighbors.
Matt Gilhooly:For more information, please visit www.thelifeshiftpodcast.com.
