Episode Transcript
[00:00:00]
Jill Brook: Well, hello there, fellow POTS patients and beautiful people who care about POTS patients. I'm Jill Brook, your horizontal host, and today we have an episode of the POTS Diaries. Today we are speaking with Lexi. Thank you so much for joining us today, Lexi.
Lexi: Hey Jill, looking forward to our conversation today and just talking about all the POTS like things.
Jill Brook: And as we were mentioning, sometimes it goes a little beyond POTS. So we'll talk POTS and beyond today. Let's start with some basics. What are the kind of baseball card items we should know just to be able to like picture you, where you are, how old you are, that kind of stuff.
Lexi: Yeah so I am a pediatric RN I have been, let's see, a nurse for about five years now, and I also have three beautiful kids ranging from five to newborn. So, very busy life and I went to a [00:01:00] military college that is kind of where I discovered I had POTS and yeah, so, just kind of working through life, it's been a whole adventure around here. Lots of surgeries and lots of doctors, so,
Jill Brook: Wow. Okay. I'm guessing on both the work side and the home personal side. So tell us a minute what it's like to be a pediatric nurse.
Lexi: I mean it's such a wide range of patients. I really love that I get to interact with the little kids and then also the parents. And because I am a mom myself, I get to really relate and talk about, oh, okay, your child's experiencing acid reflux, well, hey, you know, I have experience with XYZ, I can give you not only my personal experiences, but I can also give you that medical background as [00:02:00] well.
So that is really awesome. And then I work with an amazing pediatrician, so just the team is great. It's not too fast paced, but it's enough to kind of keep you busy and it's it's so rewarding, especially seeing the little kids smiles on their face, and you get to establish that patient relationship, because you do get to see them more often, rather than inpatient, where it's just, oh, hey, I might see you for about 30 minutes, and then I'll maybe see you, but probably not.
Jill Brook: Yeah. Wow. So you must be a very organized person to keep all of this going at once. Like, can you tell us a little bit more? Tell us about your personality.
Lexi: Yeah, so I'm very type A. Everything is very organized. I have a calendar. We have a family calendar. It's yeah, it's definitely, everything is [00:03:00] very, if something's out of whack, then the whole schedule gets thrown off, so.
Jill Brook: So what would your friends or family say about your personality besides being organized?
Lexi: Well, I am definitely an upfront type person, so if I am not a fan of something, then I'm going to let you know. But then I can also be pretty outgoing. I don't like to, I'm not the type of person that likes to sit around for very long which is kind of, catch 22 with having POTS. Cause you do run out of the energy, but I just can't, I can't sit still.
And I do think I get the compliment of a good mom a lot so that means a lot to me. Especially being a working mom.
Jill Brook: So what is your favorite part of an average week? Because you probably see a gazillion people, you do so many things. [00:04:00] Is there like a moment of the week where you're like, yeah, this is my favorite or this is really living?
Lexi: I mean, honestly, I love being at work. I, of course, love family too and I love coming home and seeing the smiles and the mommy mommy and you know, running through the door. But honestly, I really do. I think pediatrics is where I'm supposed to be and I didn't think that's where I was going, going to love being, but I've come to really enjoy it.
And I do think about it a lot, like when I'm sitting down and have some downtime, I think, wow, this is really, this is great. I like doing this. So definitely work.
Jill Brook: Yeah. So did you have a life before POTS? And if so, what did that look like?
Lexi: I did. I was a runner in high school and I've always kind of had issues [00:05:00] going up and downstairs, but I've always been very active with POTS. And when I went, when I became a mom, slowing down, I believe, I mean, you know, thinking about how your cardiovascular works, it made the symptoms worse not being able to work out as much.
So I was, big exercise fanatic, and now it's more sedentary.
Jill Brook: Did you have a challenge figuring out that you had POTS?
Lexi: Yes, so, being at this military college, I, we would have to stand down online a good bit, or for parades, you know, you'd have to stand still for long periods of time. And I started to notice that I was having an increased difficulty with that, especially being in South Carolina and in the low [00:06:00] country humidity in the middle of August.
It was not good. So when I started to realize, okay, I'm having a lot of difficulty standing here and I am pretty in shape person. Like this is not normal. I experienced passing out. I experienced, you know, that complete fog before you end up passing out, you know, that I don't know how you explain it.
The, the black spots that just completely crosses over your eyes and then you're just feeling the heart pounding. So, I'd never experienced that before and then it just all of a sudden was like, whoa, that's not normal.
Jill Brook: So did you have a trigger that you ever figured out or did it just kind of come on mysteriously?
Lexi: When I, when I got COVID the third time, that's when [00:07:00] it really went downhill. My heart rate would go up into like the 160s, 170s, and just going from sitting to standing was really difficult for me. So that was probably the most, what escalated the symptoms.
Jill Brook: And so did you recognize it right away or did you go through a long process of trying to figure out what the heck was wrong?
Lexi: It took a bit of a process. My, actually a good friend of mine, she was diagnosed with POTS while we were at school and she had very different symptoms. The, she was more migraine like symptoms versus the passing out and having the near syncope type symptoms.
Jill Brook: Okay, so you found out that you had POTS and you were in nursing school? Was [00:08:00] that, did those things coincide?
Lexi: Yes, so stress related as well.
Jill Brook: Ah, okay. Okay, so I'm guessing you you became your own patient in a way. I mean, did you take a very kind of academic approach to figuring out, okay, what can I do?
Lexi: Yes, yes. So, when I started to put 2 and 2 together and we were going over cardiac, like, issues that's when I kind of had a light bulb go off. Okay, this is sounding like me and I reached out to my PCP and we talked about it and she said, wow, yeah, that definitely sounds like you. Why don't we get you in to see a cardiologist?
And of course they didn't do a tilt table test, but but, they did the you know, laying down, sitting, standing blood pressure and heart [00:09:00] rate, and he said, you know, we don't really have very many people around anymore that do the tilt table test, and I don't think we need to put you through that.
You meet the criteria with flying colors, so we're just gonna start from there.
Jill Brook: So once you had a diagnosis, did that help you find things that helped very much?
Lexi: Yes for sure I Liquid IV is a lifeline for sure. And compression socks. Making, just really making sure I'm overly hydrated, that's been extremely helpful. And then things like taking really hot showers, you know, I avoid doing that, especially in the mornings. That's when the symptoms are at its worst.
Jill Brook: Yeah, so can I ask, when you were at your worst, how functional were you and how [00:10:00] functional are you now? Like, how much of a comeback have you made?
Lexi: At my worst, so that is when I had my third round of COVID and I, of course, the normal COVID symptoms, cough, fever, that was, had subsided and the POTS symptoms, I mean, I could barely get out of bed. Going up and down the stairs was out of the question. I, was visiting the ER multiple times, getting fluids. I just, I mean, I couldn't function.
I think I was out of work for maybe two weeks. It was just not, not loving life at all. Now I am able to function. I know that if I don't hydrate well, then that's when I start to have more symptoms and just make sure that I really listen to myself. If I [00:11:00] if I overdo it, then I know, okay, let's sit down, take a break.
It's okay to sit and just take a second or more than a second. I definitely noticed them more going up and down the stairs. So that's, that's basically my key to, okay, Lexi, you're not doing so hot today, did you drink enough? And then I can answer my own questions from there, so.
Jill Brook: So that sounds pretty good. So, so anything besides the fluids and the electrolytes and the compression stockings and the taking it easy and listening to yourself, any other kind of tricks that really helped you?
Lexi: So, not so much tricks, but we, with my cardiologist, we worked on kind of decreasing high the heart rate would go by taking Corlanor. It's not typically for POTS, [00:12:00] but you know, for heart failure. So tried that and it actually works out pretty well. I just have to focus on it not going too low at night.
So that's been helpful with more of a pharmacological look on it, but really compression stockings. Fluid Intake, that's been the go to keys for me.
Jill Brook: So does this experience change how you think of medicine or nursing or anything like that?
Lexi: Loaded question. I do feel like I had to stand up more for myself. Being in the medical field, sometimes it's harder for people to go, oh well you're just kind of, you know, fitting your, you know, you've heard this one thing and now you're putting all your eggs in a basket and saying this is definitely what I have.
So that was a little [00:13:00] bit hard to kind of persuade, I guess, the primary care physician to really listen at first, but then after going through my entire health history, that's when she kind of was like, okay, now that kind of makes sense. Let's take a look at things. With nursing, do you mean like my profession wise or looking at other nurses.
Jill Brook: Either way, I guess I'm just wondering if being a patient yourself with something that's kind of complex and maybe not that well understood, if that has changed kind of how you see patients or anything, or if it changes how you try to be as a nurse or anything like that?
Lexi: I mean, I definitely feel like with the bizarre type patients who may sound a little crazy when they come in and they're like, these are, [00:14:00] these are my symptoms. You know, this is what I think, you know, I don't automatically dismiss them. I do listen to them. And sometimes I end up getting stuck in the room for 30 plus minutes because I am really involved in what they're trying to tell me.
So I do feel like that's changed me as a nurse because I do listen and want to make sure that the patient is heard.
Jill Brook: Yeah, that's great. Okay. So I just have to ask. So you had mentioned that there are some patients who come in and they sound kind of crazy. What makes a patient sound either more or less crazy because I'm sure people listening are like, okay, I want to make sure I sound like a really, really sane patient.
Lexi: So, I don't think that, maybe crazy is not the right word, but for somebody who doesn't have any health problems, they, sound a little, [00:15:00] yeah, a little OCD, a little crazy because they have, you know, records of their entire health history in a folder and they've brought it with them and they, you know, just had one ER visit and they literally just had like three that month.
And now they're coming in saying, you know, well, we have this one problem, but we also have five other problems that we would like to talk about. So it's not so much crazy, but it's hard for a pediatrician to only spend 15 minutes with a patient, but they have a really complex history or a really complex diagnosis.
So it's more so, they are advocating for themselves and they are making sure that they're heard and they have all the evidence to back them up to make sure that, hey, like, I'm [00:16:00] serious about what I'm talking about and these are the measures that I'm trying to take to be heard and get something done about it.
So, it's a catch 22 because as as a nurse and a patient, I understand where these people are coming from. It's just harder when you have somebody who doesn't have these experiences to understand where you're coming from.
Jill Brook: Yeah, that does sound like a big challenge. Cause what I'm hearing is that the very things that somebody might do to advocate for themself and to be organized and to bring their records and things might be the very thing that could overwhelm some healthcare practitioners.
Lexi: Right.
Jill Brook: Oh, challenging. Okay. So, so do you have any advice or insights or like, what do you do in a situation like this?
Or do you just make sure not to have situations like this? Do you have any sort of thing that you [00:17:00] would do at this point if you had to go to an ER and make a good impression? Or any thoughts?
Lexi: So, being a nurse, I really try to avoid saying, hey, I'm a nurse because you, you don't want to be the patient and the nurse at the same time. So, with just being a patient, I try to go in and say, this is the problem today. So if you had a bunch of problems that you have been experiencing, but oh, now you're thinking of them while you're here, that's not the time to address it.
You need to talk about what's emergent in this moment. Like, okay, I, have really been experiencing an exacerbation of my symptoms. I've done all the things that I normally do, but it's not working. So this is why I'm here, because I've got, you know, the [00:18:00] heart palpitations, or just have a really bad migraine that won't go away, whatever you're experiencing in that moment, rather than rattling off
oh yeah, and this, and this, and that.
Jill Brook: Right. Yeah, that makes a lot of sense. So do you observe people who are both doing good jobs and bad jobs of advocating for themselves or probably more for their children since you see pediatrics? Like, do you have any examples of like somebody you've seen who either did a really good job or a really bad job?
Lexi: Yes, so, I have a specific family that we see quite a bit in the office, and she is the mother that does bring in all of the health records that she's ever had for her kids. But her children have pretty complex backgrounds without mentioning too much. [00:19:00] Dad has cerebral palsy and daughter has a g tube, so there's just a lot going on at once, but she is always very to the T.
You know, today we need to talk about migraines. You know, she's experiencing an increase of migraines. She's just really not herself anymore. She's just really lethargic type, you know, very to the T. And then when she's with the pediatrician, she may say something along the lines, you know, I'd like to discuss something next time, just kind of foreshadows what else she would like to talk about, which
that's great. That's exactly what needs to be done. That way you have that follow up appointment to talk about what's next, and then a little bit of a glimmer back on, okay, these are the things that we've done to try and help those migraines, and now, okay, did they work? Did they [00:20:00] not work? What next step do we need to take?
And you can talk on you know, those other symptoms that you had, or didn't have, that you wanted to discuss. And then...
Jill Brook: that's such a nice, super specific, practical tip. Thank you.
Lexi: Yeah, yeah, yeah.
For patients that don't really advocate for their kids, you know, they might come in and say, you know, we went to the ER, and we had XYZ going on you know, let's say a fever for four days. And Fevers are so difficult to, they're just difficult for the pediatric population because it varies so much and what a parent might say is a low grade fever to them is really not to us.
So when they go to the ER and they say, hey, you know, we've had a fever of 99. 6, which [00:21:00] if you search on Google, that is a low grade fever, but to medical providers, unless it's a hundred point four and higher and has been consistent, I mean, it means nothing to us. So sometimes we have the moms that come in and say, you know, we told them that we had low grade fevers and they just dismissed us and that was it.
Those are the parents that I say, okay well, you know, did you treat them with Tylenol before you came into the ER? Did you, like, what did you do to make those steps before you went to the ER. And most of the time it's just, oh, well, no, we didn't do anything. And then they didn't do anything in the ER.
So with it being your child, you do kind of want to advocate a little bit more, like, did, did they do any testing? Did they do anything, you know, even just suggesting like, let's just do a COVID test, let's just do a flu test. Like it for, I mean, all intents and purposes it [00:22:00] comes back negative. It's great.
You know? So even suggesting something small would be great.
Jill Brook: Okay, good to know. Yeah. And then, do you have any disaster stories of people who tried to advocate for their kids, but they just did it so poorly that it backfired?
Lexi: So I actually was just in the hospital with my three month old for RSV. Yeah, she, so we were there for five days. Now, when we first got in, you know, she was super dehydrated. They really were only just going to monitor her for a little bit and then send us home. And I tried to advocate and say like, you know, she's really not eating.
She's already in the fourth percentile. She's not doing too hot. You know, the fact that she's not eating now really bugs me. So when we finally got admitted, it was just this rollercoaster of, oh, well, we need to just work on [00:23:00] her, her feeding. It'll, it'll get better with time. Having really high temperatures and, of course, it, for whatever reason, I guess, came up that I was a nurse and the advocating went for me saying, you know, let's, you know, did you look in her ears?
Did we at least, so, you know, check her ears, did we at least think about maybe doing a chest x ray, like, did we do any of these things, and being at a teaching hospital, we got a lot of pushback of, well, you know, of course I looked in her ears, you know, that's crazy talk, you know, that was the first thing that we did on the examination so just kind of, it kind of blew up in my face because I said specific things like, can you just, can you just do it for, you know, [00:24:00] for me?
Like, I don't even care if it's great you know, ears come back perfect, but at least trying to do something and make me feel better. It, I feel like it's such a catch 22 because it, you know, it comes back and everything's fine. So, advocated for myself and my child but then ended up being totally okay and then I look kind of silly in the end because, oh, it was fine just like we told you.
Jill Brook: Yeah, yeah, but it sounds like you kind of did your, your job protecting your child and if a little embarrassment was the cost, at least you got to know that these things had been checked and maybe checked twice. Yeah, so do you feel like you have learned anything about POTS that you wish you had known [00:25:00] sooner?
Lexi: Yes, so, I mean, when you do your research for POTS, I feel like the first symptom that you come across is the near syncope and the increased heart rate when, you know, going from sitting to standing or lying to sitting, that type of thing. For me, I've also had other issues with neuropathy and decreased wound healing which also ties into Ehlers Danlos Syndrome.
So I feel like the two really go hand in hand, for me at least. When I got pregnant with my youngest I had a lot of increased symptoms of POTS. I had lots of migraines. I ended up having just weird neuropathy type pain that I wasn't experiencing prior to becoming pregnant, and of [00:26:00] course the work on your heart is much, I mean, it's just working a lot harder than it was before.
So, I didn't realize until after I had delivered that there were more difficulties with wound healing. So for me, I ended up having a placental site that never healed. So for three months I was still bleeding and still losing a lot of volume and ended up needing a hysterectomy because it just was not getting any better.
And with POTS and Ehlers Danlos Syndrome, there are certain things that you could try to do. You could try an ablation, but ultimately it may not work. It may make things worse. And I already have three beautiful children. So, even though I'm only 25, it was the [00:27:00] best route to go. And that just kind of blew my mind, I guess, that just thinking something as simple as, oh, your heart rate goes from normal 80 to 120, 140, whatever it is, that, that would be a problem.
That it could be that drastic of a outcome.
Jill Brook: Yeah, and do you know, do you have just the hypermobile type of EDS, or do you know which type of Ehlers Danlos Syndrome you have?
Lexi: Yes, so just hypermobile which, I mean, you know, like I said, kind of coincides with difficult wound healing. So...
Jill Brook: Yeah, I was going to say, it's not very well named because it sounds like you have experienced some things that are a lot more serious than just being hypermobile.
Lexi: For sure. I mean, I'm only 25 and I've [00:28:00] already had, you know, two major surgeries that you know, the one I had a hip arthroscopy, which that's more Ehlers Danlos related than it is POTS, but it didn't, it didn't work well just because, you know, the etiology of Ehlers Danlos Syndrome. You know, you can try and fix something, but odds are if you have really hypermobile hips and your hip socket is loosey goosey, then I mean, sure, a surgery might repair your labrum for a little bit, but then if you're overflexible and it's just rocking around in there, then it's gonna tear it again.
So, yeah, I definitely worry about what will happen later on. Will I be in a wheelchair in, you know, 20 years probably. And that's okay. It's just, I guess, the [00:29:00] name of the game with the, this disease process.
Jill Brook: Yeah. Has, has anything at all positive come from your experience with POTS and or hypermobile EDS?
Lexi: Yes. So I have made a lot of new friends through just knowing, wow, you know, you have this Ehlers Danlos Syndrome. That's incredibly rare, you know, and it it's nice to actually have somebody that understands what you're going through and not just over social media, but in person, which that's pretty rare.
I think I can maybe say three people I've met have had Ehlers Danlos Syndrome, and it was just all very coincidental. And I only know one other person who has POTS, so it's definitely [00:30:00] created some long lasting relationships.
Jill Brook: Yeah, that's nice. Are you up for a speed round where we ask you to just say the first word that comes to your mind for each question?
Lexi: Yeah, let's do it.
Jill Brook: What is your favorite way to get salt?
Lexi: It's two words, but liquid IV for sure.
Jill Brook: What is your favorite time of the day and why?
Lexi: Right after lunch, because I feel like I've finally adjusted to the day.
Jill Brook: Where is your favorite place to spend time and why?
Lexi: I enjoy being out in the living room with the kids because I can see kind of everything that they're doing.
Jill Brook: What is some good advice you try to live by?
Lexi: Advocating for yourself.
Jill Brook: What is something small that brings you comfort or joy?
Lexi: My cat.
Jill Brook: Who is somebody that you admire?
Lexi: My [00:31:00] pediatrician.
Jill Brook: Want to say why?
Lexi: He, yes, he kind of, he just listens. I mean, he will spend one or two hours with a patient and it's just, you actually feel heard and it's not just a quick background, oh, okay, well, that sounds good, let's just keep on monitoring. It's okay, here's the plan, here's what we're gonna do, we'll follow up in two weeks and we'll go from there.
So he just really, I mean, he has a plan and he listens.
Jill Brook: That's great. What is something that you're proud of?
Lexi: My children.
Jill Brook: What is the toughest thing about POTS?
Lexi: Being limited to some of the things that I can do just, I feel like exercise has become extremely difficult for [00:32:00] me.
Jill Brook: What is an activity that you can enjoy even when you're feeling really, really POTS y?
Lexi: Playing with the kids on the floor.
Jill Brook: Do you have any weird pet peeves?
Lexi: Yes, I cannot stand when people have their elbows on the table.
Jill Brook: Do you have anything that helps you fall asleep?
Lexi: Sound machine.
Jill Brook: Do you have anything that helps give you energy when you need it?
Lexi: Yes, I occasionally take ADHD medication.
Jill Brook: What is something you are grateful for?
Lexi: Family and friends.
Jill Brook: Have you ever had to sit down or lie down in a weird place because of POTS? And if so, where was the weirdest?
Lexi: On a regular basis, it's typically in the grocery store. For whatever reason, the fluorescent lights and the stress of getting to the checkout line, it's just overwhelming. And that is [00:33:00] typically when I've got to take a knee and just accept that I'm going to get stares and looks.
Jill Brook: Nice. Okay, I just have a couple more questions. What do you wish more people knew about POTS?
Lexi: That it is not just near syncope and racing heart rate that it can tie into lots of other things. Migraines, neuropathy, just you know, nausea, it's not just about the heart rate.
Jill Brook: Yeah. And is there anything you'd like to say to your fellow POTS patients out there listening?
Lexi: Yes if I, I can't express this enough that it is so important to really advocate for yourself. Listen to your body. If you need to use assistive devices, do it. I mean, [00:34:00] if you're 23 and you've got to use a cane or you've got to use a walker or whatever it is to help you in public, I mean, do it. If you enjoyed going to the store and the most stressful part of it is, you know, being in the checkout then have that walker.
I mean, it's gonna help you, so why not use it? I fully believe that at some point in my life, I'm going to need them, and I definitely will be even if it's just a little pop up stool that I can pull out of my purse. I'll, I'll have it handy, that's for sure.
Jill Brook: That's great advice. Well, Lexi, thank you so much for sharing your story today and all your insights and advice. We so appreciate it, and I know that everybody listening is wishing you all the best going forward. And they're probably trying to figure out where your pediatric office is, because it sounds like a dream to get you and that great pediatrician. Well, it's so nice to know [00:35:00] that there's such caring practitioners out there. Thanks a million. And hey listeners, I hope you enjoyed today's conversation. We'll be back again next week, but until then, thank you for listening, remember you're not alone, and please join us again soon.
