Episode 83 – POTS Diaries with Maddie and her therapy dog

00:00:01 Announcer: Welcome to the Standing Up to POTS podcast, otherwise known as the POTScast. This podcast is dedicated to educating and empowering the community about postural orthostatic tachycardia syndrome, commonly referred to as POTS. This invisible illness impacts millions and we are committed to explaining the basics, raising awareness, exploring the research, and empowering patients to not only survive, but thrive. This is the Standing Up to POTS podcast.

00:29 Jill (Host): Hello, fellow POTS patients and super people who care about POTS patients. I’m Jill Brook, your horizontal host, and today we have an episode of the POTS Diaries where we get to know someone in the posh community and hear their story.

So today we are speaking with the kind and lovely Maddie. I know she's kind and lovely because when I had Internet problems yesterday SHE WAS SO NICE ABOUT IT! But anyway, she has volunteered to share her story so that the rest of us might benefit. Maddie, thank you so much for joining us today.

01:00 Maddie (Guest): Thank you for having me. I’m excited to be here.

01:02 Jill (Host): OK, so let's start with the easy stuff. Give us some basics about Maddie. Where are you? How old are you? Where'd you go up?

01:10 Maddie (Guest): Yeah, so my name is Maddie. I'm 16, I’ll be 17 pretty soon. I live in northern Michigan. I have a service dog named Arlo, and I love just hanging out with friends and doing fun things.

01:24 Jill (Host): So upper Michigan? Boy, like the Upper Peninsula, or like the part of the mitten where the finger would be? Tell us about your hometown.

01:33 Maddie (Guest): Not quite the Upper Peninsula, but like just top the Lower Peninsula... pretty close.

01:40 Jill (Host): OK, so, like, frigid winters?

01:43 Maddie (Guest): Yeah, this weekend was the first warm weekend we've had.

01:47 Jill (Host): [Laughs] OK, so how would your friends or family describe your personality, do you think?

01:53 Maddie (Guest): I think they would say I'm pretty outgoing. Definitely a people person. I like talk a lot.

02:01 Jill (Host): Good, that will come in handy today. If we force you to brag about yourself, what are you good at?

02:06 Maddie (Guest): I think have a lot of perseverance and grit. I don't give up easily on things, and I just care a lot about other people.

02:15 Jill (Host): That's super nice. So I couldn't help but notice that you are like me and we’re both doing this podcast reclining. Is that because sitting upright gets you POTSie?

02:28 Maddie (Guest): Oh yeah, absolutely. [Laughs] Everything is easier laying down with POTS.

02:34 Jill (Host): Yeah! Sometimes I feel like with POTS, people act like everything is fine, just so long as you can sit down. And I find sitting to be kind of hard if I have to sit upright. And this is on my mind today because I got summoned for jury duty, and that’s like my nightmare.

And so, it's good to talk to someone else. I guess maybe we should get through this in a minute... I'm getting ahead of ourselves. But I want to hear how this affects school and homework and everything, because I know for me sitting upright is tough, but the whole world is made for sitting upright.

So I I'm excited to talk to another person who's like laying down as we do this. OK, first things first. Did you have good years before POTS set in? Did you have some POTS-free life, and if so, what was that like?

03:21 Maddie (Guest): Yeah, I think pretty much my whole childhood was. Everything is good up until age 15.

03:27 Jill (Host): So give us a snapshot of your life in the year before POTS entered.

03:32 Maddie (Guest): I was a very active person. You know, going to school everyday. I ran cross country so I was able to run to 7 miles and it wouldn't be an issue for me. I just love doing... sitting at home was boring. I wanted to be out doing something all of the time.

03:48 Jill (Host): So then what happened? What was your first sign of something being POTSie?

03:53 Maddie (Guest): I was at school and I didn't feel right. Like, I started feeling really sick. And then I told my friends, I was like, “I think I'm gonna pass out,” and I didn't. The episode lasted about like 20 minutes, half hour, and then I was like kind of back to my normal. So I was like, Well, I must have just overheated in my sweatshirt. I didn't think anything of it.

And then the next day I was like, “Oh my gosh, I feel like I'm gonna pass out again.” And so, I almost passed out in class. I went to the teacher and was like, “Hey, I really don't feel good.” And she took me, like, out in the hall. My knees kind of buckled and then I think I did pass out for the first time then.

04:31 Jill (Host): OK, so what was it like after that? Did you get an easy peasy diagnosis, or was it a challenge, or what was that like?

04:41 Maddie (Guest): For me it was a challenge, but I think compared to other people I have had a very easy diagnosis. That second day of symptoms we went to like an urgent care and their response was “It's allergies and it's just, like, build up in your ears.” So they told me, you know, “Take Zyrtec and you’ll be fine in a couple days.” It wasn't getting better.

Yeah, so we went to my primary care and was like, “Uh, you need to eat more for breakfast, you need to be drinking more.” Ran some blood tests, they were normal. And I was eating a bigger breakfast, drinking more water, and we were like, OK, this is not getting better, something is not right.

And so, we went back to my primary. And I got a Holter monitor. And that was the first sign that something was wrong. It was showing a lot of the tachycardia. And so, then I was referred to cardiology and so my diagnosis time was actually under two months.

05:38 Jill (Host): OK. So that's better than some, for sure. And so how long did the period last where they're kind of blaming you for just not eating enough or not drinking enough or whatever?

05:49 Maddie (Guest): I mean, it definitely was hard, and I think even after the diagnosis I've been doubted. Like, after I've been diagnosed by several cardiologists and stuff, I've had people be like, well, maybe you don't even have POTS. I’m like, “Uhm, I've had multiple tests. I do.”

06:05 Jill (Host): Oh, that's kind of frustrating, huh? I fight so hard for the diagnosis, and then people still don't take it.

06:13 Maddie (Guest): Yeah.

06:14 Jill (Host): What about the people who are closest to you and who matter most to you? Do you feel like they believe you and support you?

06:22 Maddie (Guest): Absolutely. They have definitely kept me going through all of this. My friends and family have never doubted me and they have always been there, and I think, well, my mom was like, she knew this was not my normal, so we pushed for the diagnosis.

06:37 Jill (Host): Yeah, yay mom! OK, so give me a snapshot of your POTS symptoms at your very worst.

06:44 Maddie (Guest): Dizziness is a huge POTS symptom for me. And then I have fainting episodes. Sometimes I get headaches, fatigue definitely, nausea. Just the classic POTS.

06:58 Jill (Host): Is it very much better now that you have a diagnosis like? Is that able to lead to much improvement?

07:04 Maddie (Guest): Right now it definitely is better. For a while, I just don't think we were finding the right treatment options for me. So for about a year or so, no improvement, things were actually getting worse. But I've recently started a new medicine for my heart rate and that's definitely been helpful.

07:21 Jill (Host): OK. So can you tell us all the things you do in a day or week to help your POTS?

07:26 Maddie (Guest): Yeah, so definitely remembering to take my heart medicine and making sure I'm getting enough salt. Electrolytes every day. I drink around 100 ounces of water a day. And taking breaks as needed. You know, sometimes I need to stop and put my feet up. My service dog does deep pressure to get my blood flowing. I think every day looks different based on the symptoms, but those are some of the daily.

07:53 Jill (Host): OK, so this dog sounds pretty awesome. Tell us about this dog and what you mean by it can “do deep pressure?”

08:00 Maddie (Guest): Um, yes, he's amazing. For deep pressure... like, if I have an episode where I'm not feeling well or pass out or whatever, he will lay on my legs or like my stomach and the pressure of him lying like circulates the blood back up.

08:14 Jill (Host): Gosh, that’s so cool.

08:01 Maddie (Guest): Yeah. And then he just does like mobility stuff for me, so he can like brace to help me stand up and he walks with me. And the trainer said like eventually he will probably be able to warn me, like, before I have episodes.

08:28 Jill (Host): OK, so maybe tell us the story of this dog from the beginning. How do you get a dog trained to do this kind of stuff for you?

08:35 Maddie (Guest): So, I have a friend that has a service dog and I was kind of talking to her about it before I decided. And I was like, I just, I don't think I can get enough money to get a service dog. I mean, they're expensive. They're thousands of dollars. And my friend is like, no, we're gonna fundraise some money, like, we can do it if this is what you want.

08:56 Jill (Host): Wow, what a cool friend.

08:59 Maddie (Guest): Yeah. So we did a Go Fund Me and we did sold bracelets - “Paws for Maddie” on one side and “POTS Awareness” on the other.

09:07 Jill (Host): Oh, very nice.

09:09 Maddie (Guest): So, we got the money and I was actually contacting places like all over the US and like, “Hey, do you do service dogs for POTS?” And some people I didn't hear back from, some people it was like, “Yeah, but we have a 10-month waiting list.” And I eventually found a place in Kentucky.

09:28 Jill (Host): So, at one point I was looking at service dogs 'cause I was fainting a lot. And I had this one episode in a park where I blacked out and when I woke up, I did not have my bag with me anymore and that was a little freaky.

So anyway, I looked at service dogs and what they told me was, “Sure you can get one, but you have to be ready to put in tons and tons and tons of hours of training with the dog.” And at that time I was like, Oh well, I'm not even physically up for the training of the dog, so I guess I don't get a service Did you have to put in like many, many hours of working with the dog?

10:07 Maddie (Guest): The place where trained him, they did like all of his basic task work and they did that for months. And then when he came to me, yes, I do definitely put in a lot of work. We train every day and some days, like, I'm really not feeling that I don't have the energy and my family has done so much to help with that, too. But yes, they are a lot of work. It is a lot of training and just... I mean, they're dogs. You have to play with them, too, and letting them be normal dogs, take them for walks.

10:37 Jill (Host): So, what do normal training session look like with your dog on a day when you're feeling up to it?

10:44 Maddie (Guest): We use this positive reinforcement, it's called the clicker, and so we click the good behavior. We were running through all of his commands and so it's kind of click, treat, when he does what he’s supposed to do.

10:57 Jill (Host): And so the click is so that you can get the timing just right so that he knows what he did right and then when he hears the click, he knows there's a treat coming? Is that kind of the idea?

11:06 Maddie (Guest): Yeah. I mean, the click is just, OK, I did it right. And then the treat is the reward.

11:13 Jill (Host): OK. So how long do you spend... like, do you spend 10 minutes a day or an hour a day? Or how intensive is it?

11:20 Maddie (Guest): It depends how busy I am that day and what I am feeling me, but on a good day I would like to do three 10-minute sessions with him.

11:31 Jill (Host): So can you tell us about any examples of when you feel like your dog has made a difference for you?

11:38 Maddie (Guest): I mean, being in public and thinking sometimes is a challenge, so having him there and like I can feel like the deep pressure does help. You know, he’s just like my little puppy that's always there for me and on a bad day I can snuggle him and he just always makes me happy.

11:56 Jill (Host): Oh, that's so nice. So sounds like you kind of faint a lot. Can you talk about that?

12:02 Maddie (Guest): Yeah. So, my POTS is actually comorbid with functional neurological disorder. So it can be hard to tell where the symptoms are coming from because some of the symptoms are similar. At this point, it's a daily thing. There was a time where it was up to like 30-40 times a day.

12:26 Jill (Host): Fainting 30-40 times a day?

12:28 Maddie (Guest): Kind of when I like faint, I don't go completely unconscious. Like, I can hear, but I can't respond and I just like collapse, if that makes sense.

12:40 Jill (Host): Like, dangerously? Do you have times when you've hurt yourself landing?

12:44 Maddie (Guest): Yeah, I've done a couple concussions and, you know, bruises and scrapes are not uncommon. And just... yes, it does result in pain sometimes.

12:55 Jill (Host): And how bad is it now? You said at some point it was up to 30-40 times a day. Have you been able to find any treatment that makes it a lot better?

13:03 Maddie (Guest): Yeah, the heart rate medicine has definitely helped with, like, my POTS fainting and then sometimes, you know, depending when I take medicine and stuff I still do have those faints. And then with my functional neurologic disorder, I do faint sometimes. But, you know, as I'm understanding the diagnosis more and finding what works for me, it's getting better and I'm able to prevent some of those episodes. I think I'm finally getting to the point where I’m learning when I need to take a break instead of continuing to push through it all.

13:38 Jill (Host): So, if I'm hearing you right, you have not one reason to faint, but two reasons to faint, and you're distinguishing between your POTS faints and your functional neurological disorder faints.

13:49 Maddie (Guest): Yes.

13:50 Jill (Host): Do they feel different?

13:52 Maddie (Guest): Some of them feel different and some of them feel the same. Before I was on medicine for my heart rate, you know, like I could feel some of them and I could definitely feel my heart rate spike before I go down. But yeah, sometimes they feel different and sometimes it's really hard to tell.

14:11 Jill (Host): OK. So you are 16, right?

14:14 Maddie (Guest): Yes.

14:15 Jill (Host): And I'm guessing nobody gave you a driver's license or did they?

14:19 Maddie (Guest): I had my permit before any of the symptoms. So I still have it, but no, I have not been driving and I definitely don't feel comfortable driving where I'm at right now. So I'm not sure when that's going to happen.

14:34 Jill (Host): I used to think that the DMV had really long, annoying lines to keep people like us from even trying to get a driver's license, right? Like, if you can stand in this line, then you're probably safe to drive. But that line is only 50 minutes in the heat. [Laughs] But that sounds really tough. What do you like to be in 16 and have to deal with this?

14:58 Maddie (Guest): It's definitely a challenge and some days I think are higher than others, but I mean, it's hard to watch all these other healthy teenagers playing sports and just like walking to class can be a struggle. So watching everyone walk to class and me... often times I have to take a break just going from class to class. You know, I'm at the age where everybody getting their drivers licenses and they’re all talking about it and like, yeah, I wonder whether it's going to happen. So, it's different for sure compared to everyone else.

15:30 Jill (Host): Have you found ways to still have a social life?

15:34 Maddie (Guest): Yeah, definitely. And I think I've met more people with chronic illnesses too, which has been nice to talk to them and, like, hear their story and share experiences. But yes, I do. I have a very supportive group of friends that I still hang out with when I'm feeling up to it.

15:53 Jill (Host): Oh, that's good. So they're willing to, like, come pick you up and stuff like that?

15:59 Maddie (Guest): Yeah.

16:00 Jill (Host): Oh, that's really nice. So what kinds of activities do you enjoy these days? What works for you?

16:08 Maddie (Guest): I love playing with my dog and getting out to see friends when I can still is really important to me. I mean, even if we're not doing a whole lot, I'm not really at the point where I can play a whole lot, but I'm a little bit involved with the school's tennis team and just going to practices and even if I can't play watching the team, because that was something that I was a part of. And if it's not a good day, then laying on the couch and watching a Disney movie.

16:38 Jill (Host): OK, so go this back to the laying versus sitting. I know that if I were back in high school or college now, the sitting upright in class would get me. I'm lucky now that I'm old, I work for myself, I can, you know, lay down, put my feet off. How do you do it? Do you have accommodations, or...

16:58 Maddie (Guest): Yeah. Sitting is pretty difficult. I mean, putting my head down on the desk when I need to. And yes, it's not uncommon that I will just lay on the floor if I need to and get back up when I'm ready.

17:13 Jill (Host): And your teachers are just fine with that?

17:16 Maddie (Guest): Yeah.

17:17 Jill (Host): That’s good. I assume that you were always a good student and they trusted you not to abuse any privileges and kind of trust you to take care of yourself at this point. Is that kind of how it works?

17:27 Maddie (Guest): Yeah, I think so.

17:28 Jill (Host): Do you attend school full time?

17:31 Jill (Host): Kind of. I have had to start taking a couple of online classes. So partially in person, and partially online. And for my online classes I just I do those laying down because, as we were talking, sitting can definitely be a challenge for POTS.

17:47 Jill (Host): OK. How is eating for you? Do you shoot up normally for dinner and stuff?

17:54 Maddie (Guest): Yeah, I do. It's not always easy and, I mean, if it's really been a rough day then I might lay down ad do it, but I try to.

18:03 Jill (Host): So, do you feel like this has changed you at all, this experience, so young?

18:09 Maddie (Guest): I definitely think it has. I think it's kind of giving me a new perspective on life. I mean, I think my whole life I've been told be grateful for what you have, live in the moment and stuff and like, I knew that, but I don't think I ever would have fully understood it without this. And, you know, just maybe realize what I have, like being able to get up and walk, like that is a blessing to me. And celebrating my victories. Like, hey, I did this today, I couldn't do this yesterday. And I think it's definitely just changed me as a person and show me that someone can be going through literally anything, and maybe they're not showing it, but maybe they're really hurting and so being there for people is a really big deal.

18:57 Jill (Host): Yeah, that's really beautiful. That's... that's really nice. And so, I'm guessing that as soon as you start looking around, you find that there's lots of people with invisible struggles that only notice if you just look for them or listen?

19:11 Maddie (Guest): Yeah, and I think in the chronic illness community, we feel like we need to pretend everything is OK oftentimes, and not show that.

19:21 Jill (Host): Yeah, we're really mature and I'm sure other people will appreciate having that in you. What do you think is the toughest thing about POTS?

19:32 Maddie (Guest): Oh gosh, there's a lot. [Laughs] I think, just not being able to do what everybody else is able to do, you know, like watching healthy people and just wishing that I could do that and just based on my own life, too. Like looking back in my childhood, I was just such a high energy kid and realizing maybe I can't do all of that now has been challenging.

19:58 Jill (Host): Do you have optimism that maybe you'll get there again at some point?

20:03 Maddie (Guest): I do. And I mean, I think I've already come so far with all of this. I was wheelchair-bound for months and I'm no longer wheelchair-bound and that's a big deal for me. So, I definitely am optimistic about the future.

20:18 Jill (Host): What is the best type of help or support that your friends or family can give you these days?

20:24 Maddie (Guest): I think really just being there for me and I think that can look like a lot of things, but I mean, I know the people that really care. I know the people that are there for me through it all, that if I knew I could call anytime, day or night, and they would be there for me. So I think, you know, just listening to me and being there for me on bad days and maybe that’s just a hug and maybe that's literally laying on the ground with me when I pass out or maybe that’s just a “Hey, how you feeling?” or “Do you need help carrying something?” I think it can look different, but just knowing people are there for me is huge.

21:03 Jill (Host): Yeah. What gives you the strength to deal with all of this? Is there anything that helps you cope?

21:10 Maddie (Guest): Yeah. I mean, going back to my friends and family, I think they really give me a reason to keep fighting, and even when it's really, really hard, I know that they aren't giving up on me, so there's no way I can give up on myself.

21:24 Jill (Host): Yeah. Is there anything that you know now about living with POTS that you wish you had known sooner?

21:32 Maddie (Guest): I wish I knew just how much I had. I mean, I think I took a lot for granted before this and I wish I could be more grateful for that when I did have it.

21:43 Jill (Host): Yeah, although, when you’re so young, you're not supposed to have to think that way, right? I think you’re so mature. Is there anything positive at all that has come from POTS? Are there any silver linings?

21:57 Maddie (Guest): I think I've made some friendships that I maybe wouldn't have otherwise. I mean, I've met some other people with chronic illness or also just people without chronic illness. You know, there have been some people that I don't even know very well, and they kind of saw me struggling through this and they were like, “Hey, I want to help you.” And that just meant the world to me. And we’re good friends now.

22:21 Jill (Host): Wow, that's so nice. Is there anything you did in particular that helped you meet some of these people? Like, did you do it online or are these people that are like in your town?

22:23 Maddie (Guest): Yeah, most of them have kind of been in my town, I guess.

22:38 Jill (Host): So how did you find one another?

22:40 Maddie (Guest): I didn't even remember specifically, but at some point we were like, “Hey, I have this condition,” and in some of the people it was POTS, and it was just like, Whoa, and then we just kind of like met up and talked about it, and then just some friends that maybe didn't know me that well, but I was struggling to the class or something, we just kind of saw each other in the hall and they were like, “What do you need help with?” And we just kind of became friends after that.

23:12 Jill (Host): That’s so nice, you know, it's making me think about how... I think one thing about struggles is that it certainly helps identify with who they really kind people are. And that’s worth something, right, to like know all the kind people and the helpful people and the compassionate people. And sometimes when, at least in my experience when I've not been needy, I sort of wouldn't know who those people are. And it is nice, kind of like having this reason to just find the really amazing people.

23:44 Maddie (Guest): Yeah, it's... it's been really eye opening and I think sometimes it's hard to see when things are like not going well and stuff, but I think there are more good people than bad in this world. I really believe that.

23:57 Jill (Host): OK, so are you up for a speed round where we ask your poor oxygen-starved brain to give the fastest answer you can think of, even if it doesn't make sense?

24:08 Maddie (Guest): Yeah, let's go for it.

24:09 Jill (Host): OK, what is your favorite way to get salt?

24:13 Maddie (Guest): Probably, I think, straight up is easiest.

24:16 Jill (Host): Just like on the palm of your hand or you shake it into your mouth or...?

24:19 Maddie (Guest): Yeah, just like shaking it in my hand and putting it in my mouth.

24:24 Jill (Host): Right on. What is the drink you find the most hydrating?

24:28 Maddie (Guest): Drip Drop.

24:29 Jill (Host): What is your favorite time of the day and why?

24:33 Maddie (Guest): Probably late morning/early afternoon because my medicine has definitely kicked by then and I'm like waking up, but I'm not at the end of the day where I’m too fatigued.

24:43 Jill (Host): Where is your favorite place to spend time and why?

24:49 Maddie (Guest): Oh, that's a good one. I love the ocean, but I don’t live anywhere near the ocean so I don’t go there very often.

24:56 Jill (Host): [Laughs] You have a gigantic lake, though. Does that seem close enough?

25:00 Maddie (Guest): Ehh, yeah.

25:01 Jill (Host): OK. How many doctors have you seen for POTS?

25:05 Maddie (Guest): Too many. [Laughs] Probably around 10, not including like ER doctors.

25:14 Jill (Host): And if you did include ER doctors?

25:17 Maddie (Guest): 15 maybe. 20, even if we're getting up to like being in the hospital and then the people that come with those like the main doctor and then the ones on the team, yeah.

25:28 Jill (Host): OK. How many other POTS patients have you ever met face to face in the flesh?

25:35 Maddie (Guest): Three.

25:36 Jill (Host): What is one word that describes what it's like living with a chronic illness?

25:42 Maddie (Guest): It's a journey.

25:43 Jill (Host): What is some good advice that anyone ever gave you about anything at all?

25:47 Maddie (Guest): Uh, you're going to get through this.

25:49 Jill (Host): What is something small or inexpensive that brings you comfort or joy?

25:54 Maddie (Guest): A stuffed animal goat that I got when I was coming out of the hospital.

25:58 Jill (Host): Oh, nice. Does it have a name?

25:59 Maddie (Guest): No.

26:02 Jill (Host): [Laughs]. I still have a teddy bear that brings me comfort and it's so old that it’s like disintegrating and there's like pieces of it coming off [Laughs] But it still brings me so much comfort. Who is someone that you admire?

26:15 Maddie (Guest): My older sister.

26:16 Jill (Host): And why?

26:18 Maddie (Guest): She’s just like the definition of tough.

26:20 Jill (Host): Oh, that's so nice. What is something that you are proud of?

26:24 Maddie (Guest): I'm proud of every hospital stay and just all the appointments of what I've had to go through for this because I mean, when I was in the hospital and stuff, I obviously wasn't doing well. And so just getting through that despite the battle.

26:42 Jill (Host): What do you think is the toughest part of staying in a hospital?

26:46 Maddie (Guest): I don't even know. It's just like, you know you're there for a reason and just hitting a low because your health is struggling.

26:55 Jill (Host): What helps you fall asleep, if anything?

26:58 Maddie (Guest): I use sleep stories sometimes. Sometimes they help, sometimes they don't.

27:03 Jill (Host): What's a sleep story?

27:06 Maddie (Guest): There's some apps that I have on or you can just look on YouTube. I usually use like the call map.

27:12 Jill (Host): OK. Are they just stories designed to help you fall asleep?

27:15 Maddie (Guest): Yeah.

27:16 Jill (Host): So nothing too terribly exciting happens, it’s just this kind of a calming story?

27:21 Maddie (Guest): Right.

27:22 Jill (Host): Oh, that sounds really helpful. I’m going to write that down. OK, next question. What gives you energy, if anything?

27:29 Maddie (Guest): Uh, my hydration drinks.

27:32 Jill (Host): OK. What is a gift that you would have sent to every POTS patient on earth if you had infinite funds?

27:39 Maddie (Guest): Is a good doctor an option?

27:42 Jill (Host): Sure, why not? For enough money, maybe, yeah... [Laughs] What is something you are grateful for?

27:48 Maddie (Guest): I'm grateful for all the people who helped getting through this.

27:52 Jill (Host): OK, I'm going to ask you to finish some sentences. I love it when...

27:57 Maddie (Guest): My dog comes and snuggles me.

28:00 Jill (Host): Aww. I hate it when...

28:03 Maddie (Guest): I pass out in like a really random place.

28:07 Jill (Host): Ah, where are...

28:10 Maddie (Guest): Just like in public where there's not many people I know.

28:14 Jill (Host): Yeah, 'cause then when you wake up, I mean, I'm guessing it takes a little while to kind of be able to get up and carry on?

28:21 Maddie (Guest): Yeah. I worry about people like calling 911 or something.

28:26 Jill (Host): Right? Yeah. I know that when I lived in Alaska, there was a point at which they gave like everybody in the whole town Narcan, which is like a drug you give people after they have overdosed on fentanyl or something like that. And I was so worried that someone was going to come and Narcan me. And I almost wanted to have like a sign around my neck saying “It's just POTS. I'll wake up, don’t Narcan me.”

28:51 Maddie (Guest): I actually have a funny story like kind of related to that. It was like the first time they had called 911 for me and the EMTs hadn’t come yet and the police officers were just kind of like the first ones to respond. And people I were with, they were like, “This is Maddie. She has POTS.” And the officer was like, “Where is it?” And they're like, “No, she has POTS.”

29:14 Jill (Host): [Laughs] Ohhh, noooo! We have to call this a new name, 'cause, that probably happens all the time. Oh man. OK, well funnily enough, my next question was, have you ever had to lie down or sit down in a weird place because of POTS? And if so, where was it? So we could expand this fainting or passing out also.

29:36 Maddie (Guest): Yeah, probably most places you can think of should be on this. School hallways, sidewalks, grocery stores.

29:44 Jill (Host): Dirty bathrooms?

29:46 Maddie (Guest): Unfortunately, yeah.

29:47 Jill (Host): [Laughs] Ohhh. Well, I'm sure glad you're smiling and laughing about it. OK, next sentence that you can finish please: People might suspect I'm a POTSie when....

30:04 Maddie (Guest): I'm laying down with my feet up on a wall.

30:06 Jill (Host): I wish we lived closer. We could spend a lot of time in that situation together. [Laughs] OK, I just have a few more questions. What do you wish more people knew about POTS?

30:18 Maddie (Guest): I wish people knew that, like, we didn't share all that we go through, and, you know, we might be feeling really sick one day or something and maybe just not showing it. But it can be really hard sometimes and so having people there for us, that really does mean the world.

30:37 Jill (Host): Yeah, that's nice. I like that answer so much. Is there anything you'd like to say to your fellow POTS patients who may be listening?

30:45 Maddie (Guest): Yeah, I would say you have what it takes to get through this, and it might not be easy, but no one can take your strength away. And so, you can do this.

30:55 Jill (Host): Nice. And last question, what made you decide that we could share your story today?

31:01 Maddie (Guest): I have been listening to this podcast for a while now. I’ve really enjoyed it and I think more awareness, the closer we get to a cure.

31:12 Jill (Host): Oh Maddie, thank you so much for sharing your story and your insights with us. I really appreciate it and I know that everyone listening just hopes that things only get better and easier for you going forward. And shout outs to your nice friends and family and dog. What kind of dog do you have?

31:30 Maddie (Guest): Umm, he’s a black goldendoodle.

31:32 Jill (Host): My gosh, sounds adorable. Well, it's been really fun talking to you. Thank you for sharing everything.

31:40 Maddie (Guest): Thank you for having me.

31:41 Jill (Host): Hey, listeners. Thank you for listening. Remember, you're not alone and please join us again soon.

31:49 Announcer: As a reminder, anything you hear on this podcast is not medical advice. Consult your healthcare team about what's right for you. This show is a production of Standing up to POTS which is a 501(c)(3) nonprofit organization. You can send us feedback or make a tax-deductible donation at www.standinguptopots.org. You can also engage with us on social media at the handle @standinguptopots. If you like what you heard today, please consider subscribing to our podcast and sharing it with your friends and family. You can find us wherever you get your podcasts or at www.thepotscast.com. Thanks for listening.

© 2022 Standing Up to POTS, Inc. All rights reserved.

[Transcriber’s note: If you would like a copy of this transcript or the transcript for any other episode of the POTScast, please send an email to volunteer@standinguptopots.org]