Episode Transcript
Full Episode
[00:00:00] 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. We are speaking with Rebecca today. Rebecca, thanks so much for being here.
[00:00:14] Rebecca: Thank you for having me.
[00:00:16] Jill Brook: So for starters, tell us where you are and what time it is, because I think we are many hours different from each other.
[00:00:23] Rebecca: Yeah, so I'm from uh, New Zealand and so it is 12 o'clock and I believe I'm a day ahead of you.
[00:00:29] Jill Brook: I think so. Yep. It's three o'clock for me a day earlier.
[00:00:35] Rebecca: So, yeah. Yeah.
[00:00:36] Jill Brook: I think that's the biggest time change I've had speaking to anybody. So where in New Zealand are you from?
[00:00:42] Rebecca: I'm from Hawk's Bay. It's on the east coast of the North Island.
[00:00:47] Jill Brook: Okay, so can you just tell us a little bit about your hometown?
[00:00:52] Rebecca: So at the moment we are just heading into summer, so it's gonna start getting really hot. And where I'm currently living, we're kind of known for good beaches and wineries. Good fruit growing area. So, and summer, there's lots of fresh fruit around, which is really nice.
[00:01:08] Jill Brook: That sounds amazing. What's the most common types of fruit that you'll have?
[00:01:11] Rebecca: We do lots of apples.
[00:01:13] Jill Brook: Beautiful. Wow. Well, it sounds amazing. I hope to visit New Zealand someday, but I have to become a better traveler first. Okay, so let's see, what else should we know about you? How old are you? And tell us like, who do you live with?
[00:01:24] Rebecca: So I'm 24 and I currently live with my parents.
[00:01:29] Jill Brook: And what are your favorite activities?
[00:01:31] Rebecca: So I love going outside and going for walks when I can. And also love just putting on some music, just singing away, having a good time.
[00:01:39] Jill Brook: Very nice. Okay, so back to this New Zealand thing because probably you are the first person that we're hearing from from New Zealand. So like when you go for a walk, what kind of scenery are you looking at?
[00:01:49] Rebecca: Lots of greenery. Lots of trees, native bush. What else there? Lots of tramping, lots of especially in New Zealand, they've kind of known for that whole conservation greenery part, which is pretty cool.
[00:02:01] Jill Brook: Wow. That sounds amazing. That sounds so nice. Okay. Other activities, anything else you love doing?
[00:02:05] Rebecca: I've just started trying to get back into swimming. That's really cool.
[00:02:08] Jill Brook: And so what would your family or friends say your personality is like?
[00:02:14] Rebecca: Especially when I first get to know people, I'm come across pretty shy. But then once I get to know them more, my personality comes out a lot more. I'm a lot more chatty and a lot more bubbly. Complete opposite.
[00:02:24] Jill Brook: So did you have a life before POTS? And if so, can you just give us like the quick description of what that life was like?
[00:02:36] Rebecca: Yeah, so about nine months before I got POTS I had just graduated from nursing had moved towns started my first job as a nurse. Then all of a sudden POTS started to show up.
[00:02:46] Jill Brook: Oh, so this was pretty recent, so you had no POTS for like the first 20 some years of your life.
[00:02:55] Rebecca: Yep. It was all of a sudden yeah, got some virus and then a couple months later my health just went completely downhill.
[00:03:01] Jill Brook: Oh, so what was the first sign that something was off?
[00:03:05] Rebecca: So for me it was kind of stomach pains was the initial thing that got me to the doctor. And so, went to the doctor, did some blood tests, and we found out that my thyroid was overactive, so we went down that pathway. Ended up in hospital because my heart was going far too fast.
And got put on to some heart medication to bring the heart rate down. And then as time went on, started getting dizzier and dizzier and work got a lot harder because I felt like I was gonna pass out all the time at work. That was pretty hard. And it wasn't until a couple weeks later we decided, okay, we're gonna stop this heart medication cuz we think this is probably what's causing you to be dizzy.
And came off the heart medication and they said, Yep, that's fine. You can just stop at cold Turkey. Everything will be fine. And two days later, wound up back in the emergency department with my heart rate just skyrocketing. And then the next day after a few tests, the cardiologist came around and said, I think you had something called POTS.
[00:04:00] Jill Brook: So, wow. Awareness of POTS in New Zealand so far sounds superior to anywhere else I've heard of. So was that lucky or does everybody just know about POTS?
[00:04:11] Rebecca: So when I first started, not hardly anyone seemed to know about it. But the interesting thing with my story is about a month into my symptoms, I got told, you know, we think you've got POTS. We can't confirm it. And then as time went on, I actually ended up getting that diagnosis taken away and they said, No, we don't think you have POTS.
We think you have something called hyperventilation syndrome.
[00:04:32] Jill Brook: Oh, so they thought it was your breathing.
[00:04:35] Rebecca: Yeah, so I thought that I was breathing too much and that's what was causing my heart rate to go really fast and be dizzy and have all these symptoms.
[00:04:42] Jill Brook: Wow. What did you think when they said that? Like did you feel like you were over breathing?
[00:04:47] Rebecca: I did at the time. You know, you don't really think you are and then you kind of start processing it and go, Actually maybe, maybe I am. So I went along with that diagnosis. I thought, Okay, maybe, maybe this is what I've got going on. Went and saw a respiratory physio, so we went through all the breathing stuff, which is really useful, really helpful.
And I still use a lot of those techniques. And it got to the point with the respiratory physio and she says, I don't think there's anything else I can do for you. I don't think this is actually what you've got going on. I was like, Okay. All right. So, you know, I keep going, pulling along. And unfortunately I kept having these big spikes and heart rate and being really dizzy that I end up having to go to the hospital.
Especially at that time I was flatting. I didn't really have any family cuz they were back here in Hawk's Bay. It was about 4 hours drive away. And yeah, and so un unfortunately with the hyperventilation syndrome, the doctors all kind of said, I think it's just a fancy term for anxiety.
Which yeah. And. It was really unfortunate because I kept presenting to hospital with these symptoms and they kind of would just say, get over yourself. You're fine.
[00:05:50] Jill Brook: So how did you finally end up with a diagnosis of POTS again, or have you not been rediagnosed?
[00:05:56] Rebecca: So I finally got official diagnosis back in July. Went and saw a new cardiologist that had been recommended from someone that I had connected with on a support group. And so I went and saw her and she said, Looking through all your stuff, like you've got classic symptoms of POTS. And I'm like, Are you kidding me?
After two years of going through all this and people saying, You haven't got POTS, we don't think you have. You know, it's all just anxiety to finally get, you know, this official diagnosis was just like a huge relief.
[00:06:25] Jill Brook: Oh man. Okay, so once you had a real diagnosis and everybody bought into it, was that able to get you some help or treatment that made a big difference?
[00:06:38] Rebecca: Yeah, so I got put on a new heart lowering medication and it has made a huge difference. I'm not feeling so breathless, like, especially at work. You know, my heart rate's so much further down and it's so nice to not feel my heart pounding all the time.
[00:06:53] Jill Brook: Oh my gosh. So did you work through all of this and what was that like?
[00:06:58] Rebecca: Yeah, I, especially when I first got that kind of, we think you have POTS I was told just drink some more water. You know, you'll be fine. We'll just wait for you to get this tilt table test and things like that. So, thankfully I had a week of holiday already planned. Unfortunately I got a really bad cold, which I think just made everything worse and went back to work for a week, ended up collapsing at work, so I was like, Okay, you know, can't continue there.
And thankfully I was able to go into a different area where It was more of a sit down job, which is great. But unfortunately as my health just kept getting worse I did end up having to stop. Stopped work last year.
[00:07:35] Jill Brook: Okay, and so can you give us a snapshot of what were your symptoms at your very worst, and then where are they now?
[00:07:43] Rebecca: So at my worst even trying to get out of bed, I just couldn't, I had to crawl on the floor because I would just keep collapsing or passing out. And be standing up, you know, heart rate would shoot up to 180, absolutely horrible . And just so exhausted all the time. And it didn't help either the flat I was living in at the time to get into the actual flat was this extremely steep flight of stairs to get into the flat. So that didn't make life easier at all.
[00:08:12] Jill Brook: Oh, and you were newly away from your family too. I mean, what was that like? Did you feel like you were just all alone and your body was falling apart and you weren't getting answers? I mean, that sounds tough.
[00:08:24] Rebecca: Yeah, it was, it was really tough. I'm so grateful to mum. She did come down especially when I was getting really unwell. So I'm so thankful for her cuz it was a long drive and it was so hard for her because she was living so far away. Was also quite thankful to have made some good friends with the flatmates I had who were also really supportive through that time. But yeah, it was so tough. You know, I just moved away. Was looking forward to, you know, starting my life and becoming so unwell and just not having that extra support from family and trying to survive by also trying to figure out what's going on with my body. Kind of saying, Oh, we think you got anxiety, or maybe you're making it up. You know, it's very, it was a really tough time.
[00:09:02] Jill Brook: So what helped you get through that? How did you cope with it?
[00:09:06] Rebecca: Something really important to me is my faith. That's, I have to say, that's probably one of the biggest things that made a difference.
[00:09:13] Jill Brook: So how functional are you now? I think we heard about how you were at your worst. How are you doing now? What can you do or not do now?
[00:09:24] Rebecca: So I'm a lot better now. I'm able to go to work three days a week, which is on my feet. Which if you had told me when I first got unwell, I would've said, no, no way, no way I can do that. Gonna be able to do that. Just starting to kind of reintroducing doing some exercise like swimming.
Still need a lot of rest time kind of to make up for those days. But compared to where I am, I'd say I'm probably like maybe 60, 70% functional.
[00:09:47] Jill Brook: So do you think that it has changed how you are as a nurse now that you've kind of been the patient?
[00:09:54] Rebecca: Oh, hugely. I think I'm so much more sympathetic to patients and knowing, especially, you know, having an invisible illness as well how hard it is to be believed. And I think just being a lot more kind of like advocating for patients as well is a huge thing that I've learned as well.
[00:10:12] Jill Brook: How often do you come across patients that have invisible illness?
[00:10:17] Rebecca: Quite frequently especially in the area that I'm in at the moment which is an outpatient setting. And, you know, it's something I didn't really think about. I think when I first started nursing, how many invisible illnesses there are out there. And now coming across them, I think it's a lot more prevalent than most people are aware of.
[00:10:36] Jill Brook: Wow. So are you like the favorite nurse of those people now?
[00:10:39] Rebecca: Probably a lot of people probably aren't aware that I actually have an invisible illness. But I think probably not. Because I work in an outpatient setting, we're only seeing people for a short period of time. There's not really too much that I need to do for that advocating side.
[00:10:53] Jill Brook: So is there anything that you know now about living with POTS that you wish you had known sooner?
[00:10:59] Rebecca: Definitely getting that official diagnosis is a huge thing. And also, being a lot more kinder, you know, kinder to yourself as well. And other thing as well, just how much it affects your whole body. It's not just a heart issue. I think that's the biggest thing as time's gone on.
[00:11:16] Jill Brook: I was just wondering if the whole POTS experience had changed your outlook on anything in life.
[00:11:22] Rebecca: So, yeah, definitely being a lot more grateful for the things that I can do. Even being able to get out and just go for a simple walk around the block is something that I take a lot more granted for now, especially when at the worst point I just had to crawl on the floor. And yeah, being so much grateful for the little things, you know, in the past that you'd say, Oh, it's just so little. I won't be grateful for it. Where now you go, there's little thing, Okay, this is huge, let's make the most of it.
[00:11:49] Jill Brook: Has there been any silver linings at all to the POTS experience?
[00:11:54] Rebecca: But definitely connecting with other people who have POTS and not feeling so alone, as well as being able to support other people who are so newly in their diagnosis as well.
[00:12:05] Jill Brook: Is there a New Zealand POTS community?
[00:12:08] Rebecca: So there is kind of New Zealand and Australia group that I found on Facebook, which, especially when I was first diagnosis was a huge thing for me as well, just being able to put up questions on there and people being able to answer and giving advice.
[00:12:22] Jill Brook: Yeah. Yeah, me too. So what does a POTS related victory look like for you these days? Like, what is something where when you can do it, you're like, Yes, I did it.
[00:12:34] Rebecca: Getting through a day of work. You know, there are still days at work that I struggle. I have trouble getting through the day. or You know, just being able to, especially now being able to get back into doing a bit of exercising. Before I got unwell that was my stress relief was being able to go for long walks and things like that. And once that got taken away, that was, that was pretty tough.
[00:12:53] Jill Brook: Yeah, it's like POTS victory part A is being able to do something again, and then part B is later on when you actually start to be able to enjoy it again. I know that for me that there was a long time between being able to walk and then being able to enjoy it again and then other things, you know, kind of always followed that pattern too, and it made me really appreciate the joy in the little things outside of just doing them.
But tell us a little bit more about your work. Like, so what's the hard part of your work? What's the part where you're like, Oh boy, this is getting tough. Is it just being on your feet so much?
[00:13:26] Rebecca: Yeah, definitely being on my feet. It's probably one of the hardest things. Thankfully in the type of job I've got currently there are plenty of opportunities to sit down, which is great. Cuz I wouldn't, wouldn't be able to survive work without being able to be sit down for some periods. But still it gets sometimes, I am needing to be on my feet for a long time.
And that can be quite tricky, you know, standing there and going, Everything's fine, everything's fine. Here's my heart just pounding away like, it's fine.
[00:13:53] Jill Brook: So are you up for doing a speed round where we ask you to just say the first thing that comes to your mind?
[00:13:59] Rebecca: Sure.
[00:14:00] Jill Brook: Okay. What is your favorite way to get salt?
[00:14:03] Rebecca: Salt.
[00:14:04] Jill Brook: What is the drink that you find the most hydrating?
[00:14:08] Rebecca: Hydrolyte.
[00:14:09] Jill Brook: What is your favorite time of the day and why?
[00:14:12] Rebecca: Probably early evening. And because that's usually when I've had the most to drink and when I can kind of truly relax for the evening.
[00:14:20] Jill Brook: Where is your favorite place to spend time and why?
[00:14:24] Rebecca: Probably the beach. Love being able to go for a swim and it's just so relaxing, getting the sea breeze and watching the waves come in.
[00:14:31] Jill Brook: Oh, that sounds amazing. How many doctors have you seen for POTS?
[00:14:36] Rebecca: Too many.
[00:14:37] Jill Brook: How many other POTS patients have you ever met face to face?
[00:14:41] Rebecca: Two.
[00:14:42] Jill Brook: What is one word that describes what it's like living with a chronic illness?
[00:14:48] Rebecca: Frustrating.
[00:14:49] Jill Brook: What is some good advice anyone ever gave you about anything?
[00:14:54] Rebecca: It's okay to take some time to rest.
[00:14:57] Jill Brook: What is something small or inexpensive that brings you comfort or joy?
[00:15:03] Rebecca: My cat.
[00:15:04] Jill Brook: Who is someone you admire?
[00:15:07] Rebecca: My mom.
[00:15:08] Jill Brook: Do you wanna say why?
[00:15:09] Rebecca: Just with how much, especially after all the trying to look after me and. You know, I just really admire her, how much that she's actually done for me, especially when I got on so unwell and that she was so willing to drive to come and support me, and then take me back home, and then take me back, and just putting out with my stubbornness.
[00:15:27] Jill Brook: What is something you are proud of?
[00:15:29] Rebecca: Being able to work again.
[00:15:31] Jill Brook: What is the toughest thing about POTS?
[00:15:34] Rebecca: That it is just so unpredictable. And it can come at a time when you know you wanna do something and then it decides to show up and it can just completely ruin your plans.
[00:15:45] Jill Brook: Mm-hmm. what helps you fall asleep, if anything?
[00:15:49] Rebecca: Listening to podcasts?
[00:15:50] Jill Brook: Oh, me too. Do you have any favorite one to recommend?
[00:15:54] Rebecca: Definitely the Standing Up to POTS podcast.
[00:15:56] Jill Brook: Good answer. Next question. What gives you energy, if anything?
[00:16:01] Rebecca: My friends.
[00:16:02] Jill Brook: What is a gift that you would have sent to every single POTS patient on the planet if you had infinite funds?
[00:16:09] Rebecca: A knowledgeable doctor.
[00:16:11] Jill Brook: What is something you are grateful for?
[00:16:14] Rebecca: Super grateful for my parents.
[00:16:16] Jill Brook: Okay. I'm wondering if you can finish these sentences. I love it when...
[00:16:21] Rebecca: It's a nice day.
[00:16:23] Jill Brook: I hate it when...
[00:16:24] Rebecca: When POTS likes to show up.
[00:16:27] Jill Brook: People might suspect I'm a POTSie when...
[00:16:30] Rebecca: They see me guzzling a lot of water.
[00:16:33] Jill Brook: And have you ever had to sit down or lie down in a weird place because of POTS? And if so, where was it?
[00:16:40] Rebecca: On the footpath.
[00:16:41] Jill Brook: And did anyone come by and wonder what you were doing?
[00:16:45] Rebecca: Yeah. So I'd actually gone out for lunch with a friend and was walking back to the car and I was thinking, I'm not gonna make it to the car, so to go lie down. And thankfully a member of the public went to a nearby op shop and gave me a pillow and a blanket. And of course it was right by the road because everyone's driving past in the car. They're like, Why is on
[00:17:06] Jill Brook: So I just have a couple more questions. What do you wish more people understood about POTS?
[00:17:12] Rebecca: That it's out there. And that it can have a massive impact on your life.
[00:17:17] Jill Brook: Is there anything you'd like to say to your fellow POTS patients out there who are listening?
[00:17:22] Rebecca: Keep going. And you know, things can get better. And keep trying to find a doctor who can help you as well.
[00:17:31] Jill Brook: And why did you agree to let us share your story today?
[00:17:35] Rebecca: Want other people to not feel so alone you know, in their journey. And yeah, also wanting to let people know that things can get better. Especially with POTS, you know, there's can be such a impacting and can make a huge difference in your life. But, you know, finding the right doctor sometimes finding the right medication things can get better.
[00:17:53] Jill Brook: Well, Rebecca, thank you so much and we are very happy that there are people like you out there in the healthcare profession who are so compassionate and knowledgeable about this. And I know everybody listening wishes you the best going forward. So thank you for sharing your story and your insights with us.
[00:18:13] Rebecca: Thank you very much for having me.
[00:18:15] Jill Brook: 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.
