Episode Transcript
POTS Diary with Kaylee
[00:00:00] Jill Brook: Hello, fellow POTS patients and magnificent people who care about POTS patients. I'm Jill Brook, your horizontal host, and today we have an episode of The POTS Diaries with Kaylee. Kaylee, thank you so much for joining us today.
[00:00:13] Kaylee: Thank you for having me. I was so excited to find this podcast and hear about people that I could relate to. So I hope I can just bring the same for those POTSies out there.
[00:00:25] Jill Brook: Awesome. Okay, well, tell us a few basics about you. Where are you? What is your age? What else should we know as some, some pure basics?
[00:00:33] Kaylee: Okay, I am in Phoenix, Arizona, born and raised in Arizona, very hot, if you don't know, it's like 115 degrees outside today. So yeah, born and raised here, I'm 25 years old and I'm an emergency room nurse.
[00:00:49] Jill Brook: Oh, okay. So you have some good insights. So having been to Phoenix for a little bit of medical care when it was 115 degrees out. I remember thinking that if I didn't have my husband to like, drop me off at the door, I don't know what people would do. Even just like walking across the parking lot to get to the doctor's appointment.
[00:01:10] Kaylee: kind of just sweat, like, all day long, and Just as important to stay hydrated. So it takes a little effort, more effort in the summer, I would say, but you get used to it and the rest of the year, it's super beautiful. The summers are just a little difficult, but we don't have to deal with a lot of the other seasonal challenges that other places do. So it works out.
[00:01:34] Jill Brook: Okay. So what do you enjoy doing there in Phoenix when the weather's nice?
[00:01:38] Kaylee: When the weather's nice I like to be outside. I like to go for walks. I'll still try to sneak them in in the summer, but it has to be pretty early in the morning. But when it's nice out, I definitely enjoy walking outside, reading outside. I like to hike. I like to... Paddleboard, try new things. Really, I'm open to anything and then no matter the weather, I love to go to the gym.
I go to an indoor gym. So that's thankfully not a barrier during this summer. I love to travel, check out new places. I love anything to do with dogs. I love, love, love, love dogs and animals of all kinds, but... Especially dogs. Spend time with friends and family. My boyfriend. I love my job. I love going to work. So yeah, those are some of the things I enjoy the most.
[00:02:27] Jill Brook: Great. That's a lot of wonderful stuff. What are you passionate about?
[00:02:32] Kaylee: I am passionate about helping other people. That's definitely why I went into medicine. I love my job in the ER. I would say that's one of the biggest things. And now adding this extra layer that I have POTS and I've dealt with chronic illness. Like, it's really enhanced that and the patients that I've met and just really made my passion for helping people and connecting with my patients even bigger.
[00:03:00] Jill Brook: Can I ask a little more about what it's like to be a nurse in an ER? Like, what are you thinking about when somebody comes in the door and like, what is your overarching goal?
[00:03:10] Kaylee: Well, luckily you are never alone in the ER. You are with a big team of other nurses, doctors, patient care techs, the charge nurse, I mean, paramedics, the fire department. You're never alone, which is the best thing about it. How would I describe it? It's really fun. It's... It's disorganized chaos.
But, you know, you're thinking on your feet, you're working with your team, everything's very fast paced. But, you learn a lot, the time flies by. You don't really have time to think about a lot else that might be going on because you're constantly thinking and prioritizing About your patients and other things going on and you get to put your patients first for those 12 hours. So I think that's honestly what I like the most about it
[00:04:00] Jill Brook: And can I ask, when you're there in the ER, does everybody seem just like they're a completely different situation? Or after a while, is it like 90% of it is sort of like, at some level, all just the same thing over and over again.
[00:04:17] Kaylee: It's funny. I was thinking about that the other day, like when things get really critical, it's a pretty similar routine that you might go through. But honestly, every patient is different. There's different things you're considering or that you have in the back of your head. But, yeah, a lot of the processes, a lot of the steps, a lot of what we do is a specific algorithm.
So, yes and no. Yes, there's an algorithm, but sometimes there's some unique circumstances thrown your way and you've got to think outside the box. So, I would say it's a blend of both.
[00:04:49] Jill Brook: So thank you for letting me pick your brain a little bit about ER nurses, because I think our community is so used to seeing them from just one angle and it's fun to hear from you. But like, what do you think about on your commute home after work.
[00:05:03] Kaylee: This one totally depends on the day. Sometimes I ride home in silence and I get home and I'm like, I don't even know how I got here, but I did. I'm here. I'm parked in the garage. I'm home. Other times I play music super loud and just kind of zone out. Some other times I feel like I call a friend or a family member or my boyfriend and I'm like, you're not gonna believe this. Obviously not with patient privacy stuff, but just crazy stuff that happens in the day. I hear a lot of a lot of beeping in my head a lot of alarms and I definitely am one that I'm still working on not taking my work home with me.
Some people find it easier to leave it at the door. I'm always thinking, okay, what can I learn from this? What can I do better? What went well? What didn't? So, although that can be draining, I think it's a blessing also because I really reflect a lot and I learn a lot and especially in the ER, I mean, you see so much in a variety of things that I think you know, taking that time to think about what went on and connect the dots and how you can be better and keep learning is really, really important.
[00:06:26] Jill Brook: Promise I'll move on from this topic, but I just feel like it's such an opportunity to have you. But what can patients or their families do to help you help them when they're in the ER?
[00:06:38] Kaylee: that's such a good question. Hmm. Let me think about this for a moment because there's a lot, but let me think of some of the big things. I'm like, if I could create a pamphlet and hand it out in the lobby, this is what it would say.
What patients can do to help us help them? I think one of the biggest things is having your story be consistent. We see a lot of, you walk in, you tell the triage nurse what's wrong. That's the first person you're talking to, and that's also a nurse who's trying to decide, you know, where you're going to be in the department, what you're here for, how severe it is. So giving them that information, we see a lot of you check in, but then when you see the nurse in the back or the ER doctor, your story, either things get left out or things get added and it can really change the course of your care.
So, checking in, let's say for a POTS patient being like, I feel dehydrated, everyone might feel dehydrated in the summer. A lot of patients might come in for that. Different stories saying, Hi, I feel dehydrated, I am a POTS patient, and I can't get my heart rate below 130 at home. I'm also having palpitations and chest pain, like these details that are going to give us a bigger picture of your care and where the best place to put you is. Another thing is, You know, knowing that we are all trying our best and I have to say with patients I work with everyone's pretty understanding and unfortunately, when someone really sick or dying comes in, some of those resources get pulled and it doesn't mean that we forgot about you or that we're not keeping an eye on you.
There's always people around. We have you on the monitor. We have all sorts of things in place to keep you safe, but sometimes those resources just get borrowed for a little bit to get someone stable. So just really understanding that if someone's not in your room for a few minutes, no one's ignoring you.
We did not forget about you. It's just that those resources have gotten pulled away for a few minutes. And once that patient's stable, they're going to be back to you. Just like if you were that patient that came in unstable, you would want those resources allocated to you to get you stable. But it's hard not feeling good.
When you're sick and you don't feel well, you're not very patient, you're kind of grumpy, you're not your normal self. So I can understand from that point of view too. You're not feeling well, so you're automatically going to lose some of that empathy. And not be quite your normal self, but I would say those two things are super helpful.
Just being consistent with your story, telling us details about what's going on at home, because the ER doctors are going to come in and see you and we'll update you as things come back. But really getting out those main symptoms the first time someone enters your room so that imaging or testing or anything that needs to be ordered isn't missed because it might be a little while before the doctor comes in to update you because now they're going to see some other patients and us nurses are going to come in and be doing that blood work and giving you medications and we're obviously, in constant communication with the providers and the rest of the department, if you forget something, we can always go tell them, hey, you know, they forgot to share this, but I think this is important. So, you know, just being in constant communication with us and don't be afraid to advocate for yourself.
Medical professionals obviously have done their studies, but you know your body and you feel like something's going on and it's worth mentioning, you know, mention it for sure, because we don't know you. We just met you today. So if there's something that can help us identify what's going on, we're all ears.
[00:10:26] Jill Brook: Thank you so much for that great advice. And I feel like I hijacked your pot's diaries a little bit to get some advice out of you. So thank you so much. And so we'll get back to it.
[00:10:35] Kaylee: You cannot eat or drink a lot of the times until testing comes back, but I promise we're not starving you. But if you're getting imaging done of your stomach or you're throwing up or you, you know, have something going on, we want to make sure if you need a procedure that we're not putting things into your stomach that would prolong that.
So we're not being mean, we're not trying to starve you. We know it's been a few hours. When you can eat, I promise we will be there with a cup of ice water and a food menu, but just not until your results are back. That's a huge one. But I swear we have a method to our madness.
[00:11:10] Jill Brook: that's so good to know. Great. Okay. Anything else?
[00:11:15] Kaylee: Nope, I think that's a big three.
[00:11:17] Jill Brook: Okay. Okay. So back to our regularly scheduled program. Let's hear a little bit about you personally. How would people describe your personality?
[00:11:27] Kaylee: I always think it's different describing yourself versus somebody else describing you. So I actually texted my best friend and I was like, Hey, I'm going to be on a podcast. How would you describe my personality? Because you know, we all think we're one way or may not think that were the things that people see us as. So my best friend said your personality is bubbly Positive you tend to look for the good in people and you're quick witted and funny.
So that was really really kind. Obviously, she left out a few of my flaws, but she really focused on the positive
[00:12:03] Jill Brook: Okay, let's focus on the positive for one more. If we were going to make you brag about yourself, what are you good at?
[00:12:10] Kaylee: Goodness. I would say I'm good at connecting with people. I feel like I could build rapport with a piece of cardboard. I feel like I can find something, you know? But you kind of need that in this field because you work with so many different people and you have to build that trust. But yeah, I would say connecting with people and I love being a problem solver.
I feel like changing things, coming up with something else, you know, kind of being quick on your feet and Figuring out how to solve a problem is also something I enjoy and I'm getting better at.
[00:12:45] Jill Brook: That's great. Okay, so did you have a life before POTS? And if so, can you give us a snapshot of what that life looked like?
[00:12:55] Kaylee: Yeah, I mean, my life has been... You know, not a lot changed after POTS, and we'll, I'm sure, get more into that. It took a lot of fine tuning, I would say, but I haven't had to change my core of my life too much. But yeah, I've always been very involved in things. Like, growing up, I was in seven clubs and eight summer camps.
And my mom always driving me places and dad picking me up and just super involved in everything. Very active. I was a gymnast when I was younger. I did cheer. I did track. I did cross country. My dad got me into the gym when I was like 10 years old. I hated it for the first few months. I was like, I wish you would stop bringing me here.
This is not fun. But now I love it. I don't know what I would do without going to the gym. So I'm very grateful. He later told me that he hated it when he was young and it was all part of a plan. So it all worked out. But yeah, I mean, I've always just loved to be involved in everything I can. I've always been very, very hard on myself, very goal driven, very determined, and I like to think if I want to do something, I'll find a way to do it.
It's not going to be easy, but I like to set goals for myself and I like to achieve them. So I grew up just doing a lot, meeting a lot of people, being very social, joining clubs, being athletic, spending time with family. I'm also an only child. So, you know, in some ways I like to think, hopefully I don't act like an only child, but I know some things that are instilled in me are from me being an only child. I'm very self-sufficient. I like my alone time. It's how I recharge. So I would say those are the big core things of my, my life before POTS.
[00:14:53] Jill Brook: Okay, so what did your POTS onset look like?
[00:14:56] Kaylee: So it's so hard because the first huge symptom was I was cheering at a basketball game in high school and during this part of the game. I was standing still and my legs turned blue, like there's no other way to put it. On the cheer team you wear a skirt and my legs literally just turned blue and almost mottled looking.
And when I noticed it, I was like whatever, like I'll just shake it out. I didn't notice that I was feeling bad. And it was bad enough to where people on the cheer team were noticing and my coach, so I was like, well, if there's a whole game going on... And they're pointing at my legs, it's probably substantial.
So, I told her I was feeling fine. I kept cheering. My parents happened to be at that game. And she was like, I know you feel well, but this is really freaking me out. If you want to keep cheering, you need to go make sure it's okay with your parents. So I ran up to the bleachers. I'm like, My legs are kind of blue, but I feel fine and I'm not lightheaded.
So I'm going to keep cheering. Okay. And he was like, okay, you know, I could tell they were concerned, but I was being honest. I felt fine and I cheered the rest of the game. I'm not going to go sit out if I'm feeling fine. I was a freshman on varsity. I didn't want to be, you know, a problem or dramatic or anything like that. And I truly, I felt fine. I wasn't dizzy or anything that I knew. So my dad,
[00:16:29] Jill Brook: a big but coming, but then...
[00:16:32] Kaylee: But then, my dad is a Phoenix firefighter paramedic, so he knew very well what was going on. The blood was pooling in my legs for some reason that either I needed fluids and I was super dry or that my blood pressure was low or that my legs weren't constricting.
I'm very loved by my family, but if there's anyone who worries about me the most, it is hands down my dad. So I'm watching him just think during this game. And so the game ended, he drove me straight to the fire station. He's like, we don't need to take you to the hospital, but I just want them to do like a 12 lead on you and just make sure there's nothing like take a set of vitals and then we'll kind of go from there.
So he took me there and used his resources very wisely. Kind of got everything done. Just a few little things. You know, you can't do everything that you would do in a hospital, but just the basics and nothing was crazy out of whack. But he's like, hey, this hasn't happened before. There's a few things that might be abnormal in your EKG.
So let's just take you to the ER. So I've never been to the ER. I needed stitches like one time. If you know anything about people in medicine, you don't go to the hospital unless you really need it and usually you should have went earlier. So the fact that he wanted to take me there, I was like, okay, I'll just kind of go with it.
They did everything. They did an echo. They did blood work. I mean, fluids, even the ER doctor said, I've never seen this before, which is not a good thing. Just so everyone knows that you want We see everything and I've maybe heard one provider say, I've never seen this before. So I know it's not a very common saying and in my head, I'm like, Oh, well, that's not good.
They don't know what's going on either, but everything was stable. Nothing came back super crazy. They referred me out to a bunch of doctors, like a hematologist and endocrinologist. I felt like I went to doctors for like a week. I literally didn't go to school for almost a week. Because we went to the ER. We were up all night. I'm like, I'm not going to school after no sleep. And then all these follow up appointments. And I was a good student. So I was able to catch up on everything and it wasn't too big of a deal. But that was the big symptom. Now, hindsight being 20/20, I always get super flushed and super red when I'm like exercising or even just walking around the ER.
Just I get super flushed. I've always bruised super easy. I've always had the most sensitive skin. Just so thin, so fragile. Things take forever to heal. You touch me and I get a bruise. I've always been super flexible. I was a gymnast. I didn't think anything of it because, you know, you're doing the splits and all that crazy stuff.
And always popping my joints out of place, you know, freaking my parents out. My dad, like, I always knew you were special. But I just didn't really know. So, but this was when I was 14, this first big symptom of my blood pooling.
[00:19:44] Jill Brook: Ask a question?
[00:19:45] Kaylee: yeah.
[00:19:47] Jill Brook: So your legs were just this blue that people noticed during a game out of nowhere. It wasn't like they gradually got more blue every day for a month. It's just one day, bam.
[00:19:58] Kaylee: yeah, I mean, I was in that uniform all the time and it had never been pointed out and I don't have a trigger, specifically but I did have some concussions earlier that year. I at some point had mono, so it's hard to say what really did it, but, you know, I know there's more coming out, too, with identifying those triggers.
I don't know mine, but no, it was out of nowhere, and then from then it did not stop. It never went away. It got worse in the shower, obviously, because heat vasodilates and makes everything worse. So said goodbye to my hour long steaming hot showers. My dad was thrilled about that one, so that was the one.
But, yeah, it did not go away. It got worse. And then I realized, I don't feel lightheaded. I more just feel like I'm kind of living in a dream. Like, things just don't feel like real life. That's still the best way that I can describe it. Later learning that, you know, that can be a part of brain fog. So it all came together, but yeah, this first symptom was when I was 14 and I didn't have a doctor who made that formal diagnosis and did the formal testing and gave me a regimen until I was 21, almost 22 years old.
[00:21:21] Jill Brook: Oh, wow. So seven, eight years. Well, what was that like during all that time that you didn't know?
[00:21:29] Kaylee: Well, we had some incidental findings along the way they found out I had hypothyroidism. So I was put on thyroid medication at the endocrinologist, but they were like, this is not what's doing it. Like this is totally incidental. Went to the hematologist, went to see all these doctors. You know, I was also iron deficient, like all these things, but nothing to explain what was going on.
So I did a ton of research and I remember looking up like blue legs, like this has to be coming from somewhere. And I found one image on Google of someone's legs that kind of looked like mine just kind of modeled bluish gray And it was about something called POTS and it wasn't even a website from the United States. I believe don't quote me I believe it's from the UK like someone else has had this figured out Longer than we have. And I'm like, maybe I have this Like, this is the only time I've ever seen a picture of someone else's legs look like this.
And I'm trying to pair it together with my symptoms, like, I'm tired, I've always gotten a little heart palpitations and intermittent chest pain, but nothing that lasts more than a few minutes, and my dad also has a history of getting some PVCs, and just a bunch of little things that I I didn't think much of.
My blood pressure sometimes... Seems like it runs soft when I'm depleted. When I was younger, I had a low resting heart rate. Like I was a runner, very athletic. So this was a change. Now I have a high resting heart rate and even higher when I stand up. So I did some research and I'm like, maybe I have this POTS thing.
And we went to go see a cardiologist who I won't name. And he was kind of like, well, you could have it or you could not... that wasn't very helpful. So then I was like, maybe this just isn't that big of a deal. It's going to be something that I'm going to have to keep an eye on and research and get myself regimined.
And later on, like, find a better doctor that knows what's going on. But right now I have blue legs. When I sit down, it goes away. I'm just going to have to be smart. And you know, not put myself in situations where I'm standing in the exact same spot for hours at a time and kind of take it from there. And I think he even started me on the steroid medication.
But I didn't like how I felt. I was like super puffy. You're a teenager. Of course, like steroids bring out acne. I was like, oh forget it. I'm I'm not taking this. So got off of it and never really followed up. He didn't seem to be really concerned. So therefore I wasn't really concerned. And you know, I'm 15 years old finding this on the internet.
[00:24:27] Jill Brook: Wow. So, once you finally had an answer, did that help you find things that helped or had you already just figured out on your own all the lifestyle things that made a difference? Like what, what do you need to do nowadays to stay feeling pretty good and being functional?
[00:24:46] Kaylee: So, this happened, I've graduated high school, went to college, passed out one time up at school, but it's a big elevation change. I was New up there probably not drinking enough water. It happens. It didn't happen again. I was tired like just so fatigued But I mean I made it through nursing school. I was involved in club. So I worked, wasn't like to the point where I was debilitating, I just kept moving and kept pushing myself, which now I know is the key, you gotta keep moving.
And then, my senior year of school, I was like, while I'm home I'm just gonna establish care with someone who maybe knows a little more about POTS because Someday, if I run into issues, I'm entering nursing. I'd prefer not to have to take a month off if I'm feeling crappy and not know what to do.
Like I am entering a field. I want to be on top of it. I want to be preventative. And I literally remember the day sitting in my room, Googling POTS specialists and I don't know what made me click on one, but I did. And my gut has never led me astray. And I found Dr. Desai at Arizona heart 360. She's like 20 minutes away from my house and not going to lie.
The first appointment was a little rough. Because she's so passionate and she wants you to do well. And she cares so much and she specializes in POTS and then preventative cardiology. So people that have family history of heart problems. And it was rough because She was like, Hey, you've never had a formal diagnosis?
Like they didn't put you on a regimen. Like, what do you mean? They said you might have it like, this is not okay. She just cared so much. And she looked at my skin and she's like, your skin looks so thin and so fragile and you bruise easily and do you have bad allergies? Like, have you been tested for the other things in the triad, mast cell, and EDS?
And .I went to this appointment by myself thinking, I'm just establishing care, and I left being like, Oh my gosh, I have all these appointments. more appointments to go to and more testing and all this stuff that only Mayo Clinic offers and a CT scan and I have to Start all of this over again. And it turned out to be for the best and she was just very passionate for me I wanted me to make sure I got what I needed but I was definitely a little overwhelmed, but I knew that everything happened for a reason and went I got all of it done. She gave me that formal diagnosis, and she put me on a regimen that has seriously Changed my life.
Some of the things were increasing salt and salty fluid. So she recommended these little packets called Element, spelled L M N D. It has a gram of salt in each packet, so it makes it super easy to do a lot of liquid IV. Eventually, my heart rate was creeping up there, so she did give me a propranolol to take at home as needed if I'm going to be doing something that makes my heart rate over 100 for a sustained amount of time, like if I'm going to do a long hike, or if I am just having a bad day and I can't get it to come down, I use that as a rescue. Including some recumbent exercise in my routine, like the recumbent bike, the rower, I still love to weight train but I do less stairmaster and cardio and now I strength train or do recumbent exercise, fluids as needed.
And, Luckily, I'm a nurse, my dad's a paramedic, so that's not as much of a challenge for me as it is for other people.
[00:28:34] Jill Brook: Can you just walk up to a fellow nurse and say, hey, I need some fluids?
[00:28:38] Kaylee: Well, luckily on the side, I do IV infusion, so I have the supplies at home and so I'll get another nurse to plug me in or we'll hydrate each other or my dad helps me. And like I said, I know it's not that easy for some people. For some people, it means making an appointment with someone or going to the ER every time you need it. Even imagine that challenge, but I'm very, very blessed in that way. So lots of fluids continuing.
[00:29:05] Jill Brook: a perk. Hey, POTS patients, this is a reason to go into nursing and then we get the bonus of having more POTS patients
[00:29:11] Kaylee: for sure.
[00:29:12] Jill Brook: in the hospitals giving care.
[00:29:14] Kaylee: And Dr. Desai was very honest with me and she wasn't defeating and she wasn't mean in any way. I was about to graduate and I'm thinking I want to go into the ER. And she's like, you need to seriously consider what this career is going to do, like being on your feet for 13 hours a day and you know, stressful for me. I'm a very big planner and you know, had this all worked out that I was going to go straight into a hospital and start working. But, you know, she didn't say it in a bad way and it, it was a wake up call for me. And for me, I took it more as, she's not saying I can't do it and I know I can do it, but I'm going to have to be really strategic. I'm going to have to have a really good regimen and put myself First, before I can be there for my patients and make sure that I'm healthy because I am not going to be 23 years old and unhealthy and dragging myself down and feeling like crap on my off days.
I just can't do that to myself and I have to be able to get myself in order if I want to go into this. So it was, it was a really big wake up call and there's other things that I do too, but she put me on this regimen and the biggest thing being compression pants, not socks, but actual pants that I have to wear under my scrubs to work and you know what?
No one notices. I mean, no one even knows I wear them. I don't know what I would do without them. Once in a while, I try to trial off of them, even just for a few hours, just To train my legs so that if I ever forget them or something happens that I'm not totally doomed. And I'll do okay, but my legs feel heavy, they feel sore because all that blood pulls and it makes my skin hurt and I'm tired. My heart rate can be a little bit outta control. So those pants, those have saved my life. I mean, I could not be a nurse without those pants. It's crazy. I will end a 13 hour shift some days bouncing off the walls because, you know, I'm keeping moving and I think that's the biggest thing is people and some people have a more severe case of POTS than I do.
And I'm aware of that. I'm not saying that you should just go do stuff anyway and it's going to fix it. But for me personally, I have found that being on my feet, moving around, not doing nothing for prolonged periods of time, that's what actually gives me my energy and keeps me going. So what I thought might be not the best field for me is in fact, really good for me as long as I'm on my regimen.
[00:31:54] Jill Brook: Oh, that's wonderful. That's great. So you're just making it work and POTS doesn't hold you back.
[00:32:01] Kaylee: No, I mean, I definitely have days and last year I would say has probably been the hardest go of it that I've had. I just was feeling super tired. I would get up and take my dog outside in the morning and my heart rate's 170 just walking around the grass. I just felt super winded, short of breath, just so fatigued, I ended up getting the flu, and I thought I could just push through it, and I made myself pretty sick for almost a month, so I have a lot of work to do in learning to stop, because it's a fine line, right?
I know that if I'm feeling tired, I need to go for a walk, I need to go to the gym, I need to do something. to keep my energy going. But if I'm sick or not doing well, sometimes I just need a rest day and I've gotten better at identifying that. But it's really hard for me. I'm not good at taking breaks and pausing and giving myself grace.
If I don't do every part of my routine, I am so hard on myself. Sometimes I'm in tears. If I don't go to the gym, if I don't feel well and I don't do a lot that day, my parents and my family and friends and boyfriend will be giving me so much grace and being like, you did more than me the rest of the week.
Like, it's fine. It's 1 day, but I, I just get so upset so easily. I want to do everything. I don't want to miss out on anything. I don't want to feel like I'm moving in the wrong direction. It's scary. You know, what if this doesn't go away? What if this is going to stick with me? It's a lot, and I'm still learning to give myself grace, and this last year tested it.
I was diagnosed with mast cell and Ehlers Danlos as well. So, my worst symptoms are like the congestion I get in my head and my nose. Just feels like you constantly have a head cold and you know that feeling when your head has that pressure. You want to lay on the couch do nothing. It's not fun. You don't want to go to the gym and be bobbing your head all around when you have that headache. It's it sucks and so I was in tears and my allergist's office and at home and with my friends and I was Feeling very defeated But every time I have a rough time, I'm reminded that I have the best team and the best doctors.
They always know how to help me tweak my regimen and luckily I was able to add on some things to help with my symptoms and kind of change a few things I was doing at home and it did better. But I'm a really positive person. I like to focus on the positive. I love to think that nothing is wrong.
Ignorance is bliss. I think my childhood would have been a lot different if I had had this sooner, or knew that I had it when I had it. But I think not knowing and just kind of having it be random, and I think in some ways that saying is true for me. But there's definitely bad days. I try to look at it and say, hey, you know, I have POTS.
I probably have 90 to 95 out of 100 days that are good. People without POTS have bad days. Like, it's part of being human. Not even including, you know, having chronic illness with it. So, you know, gotta see the bigger picture and remind myself of that sometimes. And it's seriously something I'm still working on.
[00:35:44] Jill Brook: Yeah. Oh, but that's great that you are making it work so well. Are you up for a speed round where we ask you to just say the fastest thing that comes to your mind?
[00:35:54] Kaylee: Oh, goodness. Okay, sure.
[00:35:56] Jill Brook: What is your favorite way to get salt?
[00:35:58] Kaylee: This probably isn't the healthiest answer, but right now I'm loving Cheez Its.
[00:36:03] Jill Brook: What is the drink that you find the absolute most hydrating?
[00:36:07] Kaylee: Definitely the LMNT packets.
[00:36:09] Jill Brook: What's your favorite time of day and why?
[00:36:13] Kaylee: Late mornings. I feel like when I first wake up, it's rough, right? You've been laying flat for all the hours and you wake up and your body takes some time to adjust. But once I've had my electrolytes and some food in me late morning, and that's when I go to the gym and kind of get my energy for the day.
[00:36:31] Jill Brook: Where is your favorite place to spend time?
[00:36:34] Kaylee: If I could pick out of anywhere, it's hands down the beach.
[00:36:38] Jill Brook: How many doctors have you seen for what turned out to be POTS and related conditions?
[00:36:43] Kaylee: Oh, goodness. Probably 10.
[00:36:45] Jill Brook: How many POTS patients have you ever had come into your ER?
[00:36:50] Kaylee: Oh, my gosh. I love this part of it. I feel like I'm one of those people. Everything happens for a reason. You meet people for a reason. Anytime there's a POTS patient, I feel like they always end up in one of my four rooms and it's awesome. Like them knowing that there's other people out there that have it and that we understand what they're going through and if they need a doctor to go see, I love telling them about Dr. Desai. I mean, obviously I can't, you know, actually be a referral or pressure them to go see her. But if they ask me who I see, I always share because she's been such a big part of my story and I love passing that on. She changed my life. I know she changes so many others, so I'm always sending people her way, but just to connect and have someone that gets it, it's, it's the best. It's one of my favorite things.
[00:37:42] Jill Brook: What is some good advice you try to live by?
[00:37:46] Kaylee: I think, you know, do what you can with where you are and what you have is something that I go by because every day, you might not get to do every single thing. And, you know, some part of your regimen might be missing, or you might be out of town, or, Have something not be working or be sick. So just doing the little things and doing what you can, even if it's not everything, those things still make a difference and it's okay to not do a hundred percent of the normal workout that you do if you're not feeling it that day, but you know, doing 30 minutes is still a benefit and just things like that, giving yourself grace, doing what you can with what you have.
[00:38:26] Jill Brook: What is something small or inexpensive that brings you comfort or joy?
[00:38:32] Kaylee: Small or inexpensive. Definitely a day off with no plans. I find joy in that, like getting to relax, getting to sleep in, maybe finding a new coffee shop. That brings me joy. Just having a day to unwind and catch up on everything.
[00:38:51] Jill Brook: Good one. Who is someone you admire?
[00:38:55] Kaylee: I definitely would have to say my dad. He's amazing. I mean, my entire family is amazing. My mom, too. They're both saints, actually. So, my mom's a first grade teacher. She teaches 28 7 year olds. I don't know how she does it. And my dad's a Phoenix firefighter. He went through cancer from exposure over the course of his career.
And they actually... gave him six months to live. That was over five years ago. He kicked the cancers, but he did immunotherapy. He was the first patient in Arizona to get it for his kind of cancer and never took a day off work. I mean things might have looked different, but he was still going into work and finding ways to keep going and keep pushing and now he's cancer free.
He's back on the fire truck doing super well. But I think if he can defy those odds, it's an inspiration for a lot of other people Like me that things that Aren't even life threatening that you can get through it and I watched how strong he was and it was incredible.
[00:40:08] Jill Brook: Wow. Yay, dad. That's so wonderful. What is something that you are proud of?
[00:40:14] Kaylee: I think I'm proud of the fact that it's been my dream for a long time to be an ER nurse, and I'm living it, I'm doing it, and I made it here even though there were some obstacles in the way, and it might not have been the easiest or even the wisest career to jump into after learning about this and dealing with this and trying to find that perfect balance so that I could feel good. But I'm proud that I still made it here and that I'm doing well. I'm proud of my health and that I've gotten everything in order with with the help of many others obviously but... I'm proud that I made it through it and I persevered and That I got to still live out my dream.
[00:41:03] Jill Brook: What helps you fall asleep, if anything?
[00:41:06] Kaylee: Oh My gosh, I have always been a great sleeper, like since I was a baby. I could still sleep 12 hours a year ago, but recently that's been a real struggle for me. And I have tried everything. I've tried, you know, melatonin, magnesium, Benadryl when I'm desperate. I've tried taking the propranolol before bed if my heart's racing and that's keeping me up.
I have blackout shades. I keep my room really cool. Earplugs, eye masks, CBD. It's been a struggle. I think the things that have finally gotten me On track are cutting out a lot of stimulants.
I used to take Allegra D for the mast cell. Has Sudafed in it. Helps a ton with congestion, but it does increase your heart rate. It does make you wired. So I weaned myself off of that and just am taking normal allergy medicine now.
Not having caffeine late in the day, even if it's a small amount. not looking at my phone before bed is huge. If I'm on my phone scrolling before bed, I'm doomed. It just, it keeps me up way too long. And then long acting melatonin is something my primary care doctor recommended because it's going to keep you asleep for longer and kind of work into the night and help keep you asleep. Also, that's been helpful. I do magnesium before bed. That seems to help. And quite honestly, If I know I have to work the next day and I'm not falling asleep, I'll get up and take two Benadryl.
I know it's not ideal and it's the wrong kind of sleep that it puts you in or whatever they say, but I don't care. There's nothing more stressful to me than not sleeping. Like I am in tears if I'm up all hours of the night and I know I have to go to work that next day, I will straight up have a mental breakdown and be so frustrated that I can't sleep.
So these days I'm doing whatever it is that I need to do. And I know, I hope I'm manifesting that this doesn't last forever, but right now I'm just doing whatever it takes to get me to sleep because I find that's a huge indicator of how I'm going to feel for sure.
[00:43:27] Jill Brook: Okay. So what's something you're grateful for?
[00:43:31] Kaylee: Oh boy. I feel like there's so much I'm grateful for. I'm grateful for my family. They've always been so supportive and. When I'm hard on myself, they're the ones that, you know, help me give that grace. If I forget anything or need anything, they bring it to work. They'll drop it off. They support me in so many ways.
I'm grateful for my job. I love that I get to go to work and that my job is to help people. Like I, I love doing that and I love connecting with people and POTS patients and people that come into the ER for those reasons or any reason. But I'm very, very grateful for all of my loved ones, friends, boyfriend, family, and my job. Those are two things I'm extremely grateful for.
[00:44:23] Jill Brook: So I just have a couple more questions. What do you wish more people knew about POTS?
[00:44:29] Kaylee: You know, I feel like not everyone knows about it, and if they do, it's very limited. I wish they knew all that comes with it, because it's not one thing. I mean, someone can have a lot of different, different symptoms. I wish there was better awareness all around. I think after COVID, there's a lot more research and awareness and people that know about it. And I think obviously COVID was a very dark time, especially in the hospital, but silver lining that it's spread a lot more information about POTS out there. And I just wish people knew the array of symptoms that it can cause.
[00:45:11] Jill Brook: So do you have anything that you would like to say to your fellow patients out there?
[00:45:16] Kaylee: The biggest thing I have learned from all of this is that you have to be your own advocate. Even as a medical professional, like I can honestly say we're doing our best and you know, we can only see so much and do so much with the 15 minutes that we're seeing you and hearing your story and even outside of the hospital with doctor's appointment.
Everyone means super well, but you know your body best, you have known yourself the longest, you know when you don't feel good, and most of all, you know when something is not right. So if you get that feeling, don't give up on it. Because things can get missed, not everyone knows what to look for, and that's not even their fault.
There's just not a ton quite out there. I don't think there's enough out there yet that everyone is aware of this, but no matter what it is that you're feeling, whether it's POTS related or not, if you feel like something's wrong, Something probably is. Research. I mean, maybe not WebMD or those sites.
Those could be a little scary, but actual good educational websites. Do your research, figure out what you're feeling when you go to an appointment, have an idea of what you're looking for, what tests you're hoping that they're going to run or what you might think would be helpful. Go to your appointments prepared.
Think about it before you go. I mean, how many times do you leave the doctor's office and you're like, oh shoot Like I didn't even bring up, you know that reason why I was there. Take notes Keep track of everything be your biggest advocate because you know what you might be annoying some of these people but if that's gonna do something that changes your life and Improves your well being... It's worth driving someone crazy for five minutes.
It really is. And then also, one other thing that I didn't get to mention. A recent discovery was the Normatec Legs Recovery System. I don't know if you've heard about this, but when you go sometimes to places where you can get, like, IV therapy or cryotherapy, they also have a recovery room. And you put your legs into these zip up inflatable boots, I guess, and they squeeze your legs.
And then they let go, and they have all these programs that you can do, and it helps if your legs are sore after like a long day on your feet, or you just feel like you need an extra boost, those have been amazing. It feels so good to have your legs squeezed after they're all sore and achy.
That's something that I got for Christmas this last year that has been wonderful.
[00:48:03] Jill Brook: you know, I have been hearing more and more about these pneumatic leg pumps for POTS patients from some of the physicians I work for and I think this is going to be the next big thing. And I'm with you. I've actually been using them for like 10 years and they are lifesavers me
[00:48:19] Kaylee: Yeah. I didn't even think about it for like the POTS reason. I was just like, Oh, well, you know, my legs are tired after a long day. And then after I got them, I was like, Whoa, this could be a game changer. And they're expensive, especially if you're getting the on brand ones.
But I went on offer up and found a pair of super cheap. My dad and I went on there. He found them and I tried a pair that weren't the name brand, but they did the same thing for like 50 bucks just to see if, do I like it? Am I really going to use these before we buy these really expensive ones?
So I recommend that to people to look for a pair. There's so many people that got them or have them or never opened them or anything. And they're super cheap and you can try it out and then see if you like it before you make the big purchase.
[00:49:04] Jill Brook: Right on. Well, Kaylee, thank you so much for all these wonderful tips and insights. And I know that everybody in the Phoenix area who ever needs to go to the ER again is hoping they get you when they walk in there. So thank you so much. And we wish you all the best going forward. Well,
[00:49:21] Kaylee: will be there. Right now. I'm not on our health to do a valley. So I don't know if people have ever been there, but if they are, I feel like it usually ends up that those POTSies end up in my room anyway, but it's a great team there. And yeah, We're always here for you. So thank you so much for having me on the show.
I can't wait to keep listening and hear everybody's stories. This has been such an amazing platform to find. And I never knew there were so many people out there with this and telling their story. It's amazing. So thank you so much.
[00:49:54] Jill Brook: Thank you. And Hey, listeners, we hope you enjoyed today's conversation. We'll be back again next week, but until then, thank you for listening. Remember you're not and please join us again soon.
