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Jill Brook: Hello, 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 with Randi. Randi, thank you for joining us today.

Randi: Thank you for having me. It's a pleasure.

Jill Brook: So can we start with just the basics about you, like your age, where you are, what your deal is, anything you feel like sharing as a little intro.

Randi: Sure. Yeah. So I'm 42, about to be 43 this summer. I'm from Southern Virginia. Really close to that North Carolina line, just north of Duke. I've been here in the state for maybe about a little over 13 years and I'm a surgical nurse. I've been doing that for the last five and as scrub tech previous to that.

So, still schooling, still furthering that education. So I'm in that school brain right now.

Jill Brook: Oh, wonderful. What is it [00:01:00] like to be a surgical nurse? I mean, you watch a lot of gory stuff or what?

Randi: Well, I guess to me it's not that gory because I just, I'm so used to it and I really enjoy the complexity of the human body, I think. So it's a complicated piece of machinery is what I tell people. So I don't even know what really got me into the surgical aspect of healthcare. I one day said, oh, I wanna be a surgical tech.

I went to school for that. I was like, I love this so much. I started working in that field and I was like, I wanna do more. So I went back to nursing school and came back as a operative nurse, and I take care of patients before they're going into surgery, while they're in surgery, as they're waking up, and sometimes I send them home.

So I do every aspect of that surgical process with patients, so...

Jill Brook: Wow. So can I just ask, what's the [00:02:00] gnarliest surgery you have ever seen?

I mean, to me a knee replacement seems like insane.

Randi: Yeah. Knee replacements are pretty wild. People don't realize how complex they can be and how, oh gosh, invasive they can really be. So, the gnarliest procedures for me all the time are an any amputation, so, yeah.

Jill Brook: Okay. Well, so how would your friends or family describe your personality?

Randi: Oh smart, funny, kind, caring, compassionate. And my friends would describe me as being very stoic.

Jill Brook: Okay. All right. And so it sounds like you have a big, full life and career going even though you currently have POTS, is that correct?

Randi: Yes, yes. It surprises a lot of people. I've only met maybe a handful of POTSies. And it's always a [00:03:00] shock that I hold a full-time job in a healthcare field because it, it is demanding, it's a demanding area to be in especially in that surgical aspect. So I have to always explain myself, how do I do this?

How do I, how do I get through every day of work? It's, and that's a complicated answer, so...

Jill Brook: So before we get to that answer, can we back up a little earlier in your story and ask, did you have a time before POTS? When did POTS enter your life? How did you know it?

Randi: Yeah. So as an afterthought, I honestly realized that I've pretty much always had POTS, probably since late teens. I didn't realize what it was until it became such an issue that it just incapacitated me. So probably about the fall of 21, I just started to have [00:04:00] one problem after another. The heart rate, I couldn't keep under control.

It was just, it was just debilitating. I'm lucky enough to not have the subtype where we have the synchopal episodes, but other symptoms were just difficult to deal with. Extreme high heart rates, flushing, heat, I couldn't control how my body would react to temperatures more often overly hot than cold.

That is extremely difficult to deal with in my line of work. So, yeah, I feel like I've been dealing with it forever, but didn't really know what I was dealing with.

Jill Brook: So during that early time where you didn't know, did you have guesses or did you just think that you were feeling what everybody feels or...

Randi: I was honestly feeling what everybody feels. Because I, I didn't know what POTS was. Just by [00:05:00] happenstance, I feel lucky in this aspect, I had ended up in an emergency room, the very emergency room that I had worked in, and an incredibly smart, amazing emergency room physician said, you know what, I think, I think you have dysautonomia.

And I'm like, what is dysautonomia? So, that really raised a flag for me and that put me on my path to getting diagnosed, honestly. So I was pretty lucky to not have this drag on forever, you know?

Jill Brook: So you had been in and out of the emergency room with symptoms that probably were related to POTS, but you never had any connection until this one doctor?

Randi: Yeah, yeah. Yes. My heart rate would be really severe and, you know, pushing a hundred seventy five, two hundred, you know, beats per minute, which is very extreme and it's incredibly scary, and you don't really understand what's happening to you. And I'm [00:06:00] like, as a nurse, I'm like, something is very wrong.

So, I just think I was just lucky, lucky to be in front of the right person at the absolute right time.

Jill Brook: Wow. Yeah. Okay, so once you had an idea that you had dysautonomia and then even maybe a POTS diagnosis, how much did that make you able to find things that helped?

Randi: Oh. Of course, like most of us have to, we have to wait to get into that right specialist. I had to wait a few months, but I did lots of research and tried to use those resources to take care of myself until I could figure out that yes, this is what I have going on. So, you know, I did the extra fluids and adding the salts and I was already using compression garments anyway, given my field I work in, and just kind of biding my time in waiting.

I saw a [00:07:00] cardiologist in that waiting process, a neurologist, a rheumatologist, they sent me to endocrinology. I've seen so many specialists. And then I had just had to wait for that electrophysiologist who was well trained in this area. So until I could get all that testing done. Yeah.

Jill Brook: Wow. Okay. And so did that bring any extra help? Like was there any treatments besides the salt and compression?

Randi: Yeah, so for a long, a long time I used beta blockers and oh, it was a hit or miss. Beta blockers really made me feel more yucky than they did any good which made it not that wonderful or compatible in the nursing field. After a while we tried something called pyridostigmine, or Mestinon which is still in the, you know, early stages of POTS for hyper POTS.

And that [00:08:00] was amazing. I didn't have the lag you get from your beta blockers that feeling like a zombie every day kind of feeling. But I could still get my heart rate to come down. And kind of give me more parasympathetic tone or that rest and digest instead of the high norepinephrine levels.

So yeah, but that's, that's been a great change for me in recent months.

Jill Brook: Oh good. So did you just work the entire time? Were you just kind of going about your business pushing through?

Randi: For the most part, I did work constantly, pushing through. And I did that very well. It is an invisible illness as we all know, and you can look perfectly okay and not be okay. And I hid that very well. And then I got COVID for the second time in the summer of 22 before I was ever diagnosed, and I [00:09:00] ended up in the hospital for a week.

It ended up being what they believe was post infection myocarditis. So yes, which seriously complicated the POTS. I ended up taking myself away from work for about three months because I ended up getting severe post exertional malaise. It was, I was so seriously ill that I had actually

basically had a mild heart attack from just the ischemic demand from the heart working so hard.

Jill Brook: Oh no.

Randi: It was incredibly humbling as a healthcare provider. So, yeah.

Jill Brook: Wow. So you had really at least a triple whammy. So you had the ongoing POTS, and then you got COVID,

and then you got myocarditis.

Randi: All right before my 40th birthday, so [00:10:00] happy birthday.

Jill Brook: Oh my goodness.

Randi: But yeah, and so, and during that time it wasn't that wonderfully pleasant. I had a good support system with my husband, but unfortunately, you know, during that time I had to deal with lots of medical trauma because nobody knew what was really, truly wrong with me.

They couldn't quite decide what was happening to me in that moment. And being a nurse and seeing the confusion and having two different doctors on my care and nobody was on the same page and feeling as horrible as I did it was just, it really knocked me down. I became very depressed, left the hospital, could hardly use my legs.

I left in a wheelchair, continued to use that for weeks. It was just, it was insane. I really thought, well, maybe this isn't dysautonomia, maybe I have something more serious wrong with me. But we later found out that it was post exertional malaise from being [00:11:00] so severely ill.

Jill Brook: Oh.

Randi: Yeah. Yeah. So...

Jill Brook: How much of a recovery did you make from the COVID and the myocarditis?

Randi: It took a long time to get back to what was considered my normal. Gosh, probably well over six months and anytime I get a, any viral infection, it doesn't matter what it is, I know it's gonna be a setback, not quite as severe as that, but I know there will be re repercussions, so, yeah.

Jill Brook: Can you tell us more about myocarditis, and if that interacts with POTS at all, like that's two things on your heart, right? So does that...

Randi: Yeah. Yeah. So it's basically where an infection causes severe inflammation in the muscle of the heart. It becomes unable to work appropriately, and so just like we would with POTS, we have that incredibly high [00:12:00] heart rate because the heart is working so hard to pump effectively, but it can't because it is so inflamed.

So basically my heart was working probably five times harder than it should have. It couldn't contract very well. So my heart actually on EKG would read low voltage. So it wouldn't get that good hard pump to move the blood through your body. So basically I was severely drained. My heart rate was up at about well over 200 when I walked in the ER door.

And that insult, I didn't realize what it was occurring over a three day period. I just thought I was overly symptomatic, took extra beta blockers as needed, nothing was helping until I was so severely fatigued from my heart, just saying I can't do no more. I had to seek medical treatment.

Jill Brook: Okay, [00:13:00] so I see where your reputation for being stoic is coming from.

Randi: Yeah. Yes. I thought, okay, I know what's happening and I'm gonna do this and I can treat it this way. But yeah, it was over the course of a weekend and I was, by the end of the weekend, I was like, no, no, something's wrong. So, yeah. Mm-hmm.

Jill Brook: But now you feel like you're back at your POTSie baseline.

Randi: I think I'm back at my POTSie baseline. Yeah. Yeah. So, now that I know myself better, I know what I deal with and I know where my limits are. Sometimes I can feel like I'm prepared to deal with maybe a minor illness, and then other times if I'm unpredictable. So I do the best I can.

Jill Brook: So how do you feel like this whole experience has changed you either as a nurse or just a person.

Randi: Yeah, [00:14:00] I've always been very compassion driven nurse anyway for patient care, but it has really affected the way I personalize patient care. It is too often seen from myself as a patient or even viewing other nurses giving patient care that we are not good active listeners. So every patient that I take care of, I always listen to the whole story.

You know, give them that, you know, compassionate ear because we all need it. It's really affected how, you know, I treat every patient like family, every patient no matter what. So without judgment. It's very important to me. So.

Jill Brook: Yeah. Well that's great. You had mentioned that when you were in the hospital it was frustrating. Do you have any tips for [00:15:00] people who are in the hospital or even just like, I don't know, are there times when you're in the hospital where you just have to just like sit back and chill out? Or are there things you should be doing or can you talk a little bit more about your experience and what you'd say to other people if they ever have to have a similar one?

Randi: Yeah, so as frustrating as it can be whether you're a healthcare provider or not, you know, most patients don't know what really happens in the background, who's taking care of you, the load or stress they may be under that day. If you are a standard patient and you know nothing about healthcare, nothing at all, the very best thing you can do is try to be patient. Most

facilities and staff are already under a strain, unfortunately. It's everywhere. Just try to be kind, try to be patient. Don't, don't jump to conclusions. Just kind of try to go with the flow, but [00:16:00] ask all the questions you can ask. Be an advocate. If you don't feel like you're getting the answers you need, reach out for an advocate.

Gaslighting from your medical professional is unfortunately prominent these days, so don't be afraid to ask for a second opinion.

Jill Brook: Okay. Yeah, that's great. That's great to know. What's the best support people can give you these days, and what can they do to make your life easier? Either at work or at home?

Randi: Just being generally supportive, understanding what you're going through, just the basic understanding of what you deal with day to day, I think is number one. We better understand what somebody's going through, then you can make some accommodations for them, make their day easier. Just being available to talk even is a huge stress relief

for some, it is for me. I have to vent too some days. [00:17:00] So, because some days are harder than others. So, yeah, I mean...

Jill Brook: So can I ask you, what did your POTS look like at its very worst, and how much would you say it's improved?

Randi: Wow. Every, I would say at the very worst I would have what we call adrenaline dumps, sometimes three, four times a night. I wouldn't get much sleep. It was just daily, multiple times a day. Relentless is how I would put it. Today, oh, I get maybe, maybe five wake ups in the middle of the night, having episodes, which is fantastic.

I can thrive. Yes, it is an improvement. I can thrive a little better at work. Like really I can get through the day and not be completely [00:18:00] exhausted when I get done. So, that is a win for me. Yeah. And I have a great, you know, I have a great medical team, so any, any concern, I can reach out and they get back to me very quickly.

So, and we can tweak anything in my treatment plan, so...

Jill Brook: That's great. How many doctors did you have to see to kind of find the ones that you considered like to be your really good team?

Randi: Probably about, probably about eight, yeah. Eight. Mm-hmm.

Jill Brook: Okay. What's the hardest part of your day because of POTS?

Randi: Whew.

The hardest part of my day is if it's a day where I have to consistently, nonstop be on my feet.

Jill Brook: During surgeries?

Randi: Yep. Surgeries. Assisting with, sometimes I do some endoscopy stuff, so I'll do that. But if I, if I have to continuously be on my feet [00:19:00] all day, I know it'll be a harder symptom day. So, I do get days where I get breaks from that, so it helps, and helps, you know, even things out throughout my work week.

Jill Brook: Do you have any little tricks that you use? I don't know, like do you ever go hide in a back room and put your feet up or, I don't know, do you use caffeine or any, any little things or do you just kinda suffer through it?

Randi: Sometimes I'll suffer through it, but I do try to stay incredibly hydrated with lots of salts and electrolytes. I wear compressions every day relentlessly. I, when I'm having really bad flushing and hot flashes, I will literally wear an ice pack as I work. But it makes a world of difference, so, yeah.

And then if I have a real, if I'm having a really bad day, I'll just tell somebody, look, I'm struggling, keep your eyes out on me. So, yeah.

Jill Brook: Okay. What about sleep? Do you [00:20:00] have any tricks or tips for sleeping better?

Randi: Oh yeah. Most, mostly I just use medication to help me a little bit. Medication, body pillow, I really love the Calm app. That's my favorite thing in the world. Using the Calm app.

Jill Brook: So you had mentioned that your husband had been really supportive. Can I ask, because it sounds like your job is really demanding, especially for a POTS patient. So I imagine when you get home at night, I mean like, I don't know, like is it difficult to have energy left to do anything else? Like how, how do you how do you spend time together and enjoy it when you might be totally spent?

Randi: So, I'm a homebody and I've become more of a homebody since having to deal with all this and survive, I'll call it. So he's so great. There's, we just kind of wing it. We go with the flow. [00:21:00] Sometimes I cook, sometimes he cooks. He knows you know where my limit is. He has to remind me where that limit is sometimes because I'm kind of stubborn sometimes.

Reminds me, did you drink enough water today? You know, just, yeah, yeah, and sometimes I can be a little mean on myself because it's frustrating having this illness and feeling like you wanna do all these things, but you, you know, you forget that you have to, you have to draw some limits. And, and he reminds me of all the time, like, just, just stop.

You're, you're being too hard, you're being too hard on yourself. You got to slow down. So, yeah, he's just my daily, support system reminder to be kinder to myself, 'cause there's days where I'm probably not the best person to myself. So...

Jill Brook: Oh, yay. For supportive partners. So you, you sound so relaxed [00:22:00] about having gone through some pretty scary experiences. Do you feel relaxed about it? Do you have to work at it? Like do you have coping mechanisms? Where you freaked outta your mind when you had the myocarditis? I mean, like, talk to us about like mentally dealing with all this stuff.

How do you do and do you have any

strategies?

Randi: Yeah, so it's been incredibly challenging. At first, I did become severely depressed when I became that ill. It was just unbelievable how fast it had happened and how I became so unbelievably incapacitated where I couldn't take five steps in my hospital room with a, you know, a PT or OT person,

with a walker because I was, my legs couldn't, they just couldn't work. They couldn't support me at [00:23:00] all. And I would become incredibly, you know, shaky, fatigued. I would immediately start sweating. It was just like my body just couldn't do anything. And that was incredibly scary because I thought, you know, this isn't POTS.

This is something different. This is something really seriously wrong. It was very, very difficult to deal with. And having to take the time off of work was not well received there. So I had to deal with that as well, unfortunately. So, but yeah, it, it was it took me a very long time to get myself in the right frame of mind, you know, to prepare myself to return to work.

You know, still be on that recovery path, 'cause even after three months I was still struggling to have enough energy to get through every day.

Jill Brook: Did you have any coping mechanisms or tips or tricks to share with other people?

Randi: Well it was a whole lot of rest at first. [00:24:00] I had to be gentle with myself. Every day I would try to increase my daily activities, which I'd have good days, I'd have bad days, but I kind of kept trying to push myself a little bit. Don't be afraid to use any mobility aids. It doesn't make you lesser of a person to do that, whether you're young or not.

That was something I had to get used to. Don't I, I had to reach out to you know, other services like therapy and things like that, like professional, just being able to talk to somebody because it's difficult to navigate, you know, such a unpredictable illness. So, yeah.

Jill Brook: Are you up for a speed round where we ask you to just say the first thing that comes to your mind?

Randi: Yeah, sure.

Jill Brook: What is your favorite way to get salt?

Randi: Ooh. LMNT, the carbonated version of that.

Jill Brook: Carbonated version [00:25:00] of LMNT.

Randi: Yeah.

Jill Brook: You just put the powder in sparkling water.

Randi: It comes in cans now, so it's already carbonated.

Jill Brook: I didn't know that.

Randi: Yeah. A little bit more concentrated, but I love it. It's one of my favorite things now.

Jill Brook: Okay. What is your favorite time of day and why?

Randi: Oh probably the evening. Although I'm an early bird, the evening is my wind down period where I can just come home and relax and just kind of restore myself for my next day.

Jill Brook: Where is your favorite place to spend time?

Randi: Just at home. I enjoy being home.

Jill Brook: What is one word that describes what it's like living with a chronic illness?

Randi: Oh, unforgiving.

Jill Brook: What is some good advice that you've heard that you like?

Randi: Oh that, that my illness does not define me.

Jill Brook: What is something [00:26:00] small or inexpensive that brings you comfort or joy?

Randi: Oh coffee or hot tea?

Jill Brook: Who is someone that you admire?

Randi: Hmm. My husband.

Jill Brook: Do you wanna say why?

Randi: Yeah. He's so unbelievably supportive of me, even though he fights his own battles every day. So, yeah. Yes.

Jill Brook: Yay husband. What is something that you're proud of?

Randi: Oh, I'm super proud of my ability to keep going even on days when I don't really want to sometimes. So.

Jill Brook: What is an activity that you can enjoy even when you're feeling really POTSy?

Randi: Mm. Knitting.

Jill Brook: Oh. What do you knit?

Randi: I actually really enjoy knitting hats, really chunky [00:27:00] wool kind of hats, so...

Jill Brook: What is something you are grateful for?

Randi: Wow. I think I'm, I'm immensely grateful for my, for some of my coworkers, my husband, and one or two incredibly close friends have been rock solid support systems.

Jill Brook: All right, last couple questions. What do you wish more people knew about POTS?

Randi: Wow. I wish more people knew the complexity of POTS, how every person with POTS is unique from the other, that there's not this one umbrella that this is what POTS is and that's it. We're all individual when it comes to our POTS.

Jill Brook: Last question. Is there anything you would like to say to your fellow POTS patients out there who are listening.

Randi: Yes. So don't be afraid to get out there, get into some communities, [00:28:00] find some friends that are, whether it's close, far away. Be advocates for one another. Be educators even. Even if you're not a healthcare provider, you can still educate people. You know, fight for ourselves. You know, help each other out because the community is far more vast than we all realize,

so.

Jill Brook: Yeah. Well that's great advice. Well, Randi, thank you so much for sharing your story and your insights with us. We so appreciate it and I know that everybody listening is just wishing you all the best going forward. Thanks for being here today.

Randi: Well, thank you for having me.

Jill Brook: Okay, listeners, that's all for today, but we'll be back again next week. Until then, thank you for listening, remember, you're not alone and please join us again soon.