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Inside the ER with Nurse Practitioner Kylie Tastula

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Kylie Tastula 

We are very aware that "time is brain." For us, that's our mantra. 

 

Piers speaks to award-winning nurse practitioner Kylie Tastula about the admission process for stroke patients, the changing nature of stroke treatment over the years, challenges faced by young stroke survivors and, most critically, the importance of timely treatment.  

The information provided in this podcast is not intended to be a substitution for professional medical advice. Always consult with a qualified health care professional with questions you may have regarding a medical condition. Piers Grove [00:00:20] Welcome back to 404: Brain Not Found, a podcast for young stroke survivors and their families. My name is Piers Grove, and today we're taking a look at what happens when a stroke victim is wheeled into an emergency department with award winning stroke nurse practitioner, Kylie Tastula. Kylie works in the stroke unit in the Royal Prince Alfred Hospital, which happens to be the very hospital I was rushed to on the morning of my stroke. Kylie, can you tell us a little bit about your role at the hospital? Kylie Tastula [00:00:55] Thanks, Piers. So I am the neurosciences nurse practitioner at RPA, and I sort have been running the stroke team for about 12 years now. So I have a few different roles, but I guess a lot of my role is the hyper acute stroke part. So I run the stroke calls, an hour clot retrieval service, and I also do a lot of their outpatient activities with stroke clinics and things, and then do a lot of the coordination of care. Piers Grove [00:01:18] I love, I love some of these medical terms like, what was it, blockage remover? Or clot retrieval? Kylie Tastula [00:01:26] Yes. Piers Grove [00:01:26] So that's. Kylie Tastula [00:01:27] The cleaning of the drain pipes, as our doctors would call it. Piers Grove [00:01:30] Excellent, excellent. And 12 years. You must have seen a lot in that time. Kylie Tastula [00:01:36] I most certainly have, given. We're going in about a thousand stroke calls a year at the moment. But it has changed dramatically. I've been nursing for about 25 years, so stroke is very different. Piers Grove [00:01:47] Can I explore that? How, how has it changed? Kylie Tastula [00:01:50] How has stroke changed? Wow, so I became a nurse in the 90s and back when I started, stroke was very much that disease. It was, there wasn't a lot of treatments available and I got a bit of physio occasionally and the vast majority end up going home without much support and without much hope, I guess, and especially in the last few years, stroke has become extraordinarily time dependent. Everyone sees a medical emergency that it is. And the outcomes are absolutely extraordinary compared to what they used to be. We now see patients who we would have sent to a nursing home ten years ago, who are now are walking out of hospital and living, going back to living fulfilling lives. So it's actually amazing to watch. Piers Grove [00:02:33] That's really interesting for me because I guess I walked into this with no context. You know, I'm a 45 year old man. I thought I might have a heart attack, but I never thought I'd have a stroke. It was never even on the radar. And, and the outcome is obviously vastly improved for me. If I'd had it when I was 33. Kylie Tastula [00:02:56] Yeah, it is fascinating. I think, as you pointed out, young people don't realise it. They can have strokes, but unfortunately it happens a lot more frequently than what people think. Piers Grove [00:03:05] I'm going to just for my own indulgence, ask you to walk me through probably the experience I had at RPA. So I'd been out drinking and cruising with my mates until about 1 a.m. and, fell into bed and everything seemed okay until my daughter jumped on me at 6:30 a.m., as they do. And I was in a very strange state. I had, paralysis down half my body and my speech came out, I think my daughter described me as sounding like a walrus, which was very unkind of her. Kylie Tastula [00:03:54] Probably kinder than it could have been. Piers Grove [00:03:57] Yeah, probably. But it was really strange because I knew something was going on, but I couldn't clock what. And I tried to go to the bathroom and I sort of fell over, but I was conscious and thankfully my fiancé and son very quickly identified and called an ambulance. But that process was, I can remember leaving the house. I can remember sitting in the back of an ambulance. I don't remember the journey. I don't remember being admitted. Would you be able to fill me in on some of the gaps that, you know, from when I was in that ambulance to when I actually went to an emergency? What was the process that I went through? Kylie Tastula [00:04:45] A lot of people don't remember a vast majority of the hospital stay. So I guess it all starts with your family doing the correct thing in terms of getting help and that fast recognition. So I think a lot of people don't actually make it to hospital in time. So ideally, calling an ambulance when you notice something isn't right. And so what they tend to do is ambulance will prioritise stroke. So it gets a higher number on their matrix. And they will take you to what we call a stroke ready hospital. So once they identify if they think you're fast positive or they have a high suspicion you're having a stroke, they will take you to a stroke ready hospital, which not every hospital is capable of treating stroke initially. So they will pre-notify us. So they will call through and let the emergency department know that they're bringing in someone who they think might be having a stroke. And then our emergency department here how it works at RPA. They will put out a stroke call for us. So they'll put out a pager which identifies everyone who should know. That's about what's about to come through. So we don't get told any details. We just get told that there's a stroke coming to the emergency department. So if it's in ours, myself and one of the medical staff will wander on down to the emergency department, and we often meet you as you're coming in through the door. So the ambulance will wheel you into our triage bay and into our resus bay. And you'll often be greeted with a vast number of people. And so that could be myself. It can be the medical team. It can be the emergency teams or the emergency medical team and the emergency nurses. And we will do a quick assessment. So the ambulance will tell us what they've found, what symptoms I think you have and any relevant medical history that would like to know. So medications and things. And then we do a very quick examination of you. It tends to take a couple of minutes. At the same time emergency we're putting in cannulas and they'll be taking bloods. We'll all be talking over the top of you and then we whisk you off to the CT department. So we tend to be out of our emergency department in under five minutes. So it's a pretty whirlwind tour for most people who have never been through emergency before, let alone had a stroke. Piers Grove [00:06:48] I had no idea you could spend five minutes in emergency. I've been there a couple of times over the last few years. And it's a long 12, 14 hour process in many instances just waiting for a bed. Yeah. Kylie Tastula [00:07:04] Well, you go back to emergency. Don't worry. There's more time to spend. So once we, once we've assessed you and we've worked out that. Yes, we think you are having a stroke. We take you around to the radiology department. So the CT scan, they also get that pager to notify that there's a stroke coming in. So they empty the scanner for us. That way there's a CT scanner waiting for us. So we walk around to scan and then we get you in and we do a CT scan. One of the big changes in stroke care has been that CT. So we now do a couple of different images of your brain that tell us multiple different things. So it will show us if you're having a bleeding type of stroke which will show up instantly on the scan. And then we do some looking at the vessels that will show us if you've got an occlusion in that large vessel. So that would make you eligible for certain treatment. And then it shows us a different type of colourful scan that makes these maps for us. That show us if there's an area at risk, which is sort of what we call our salvageable tissue, and that's the area that we're hoping to rescue if someone is having a stroke. And those scans are again done very quickly. So we're out of that CT scanner in about ten, 15 minutes. And then we start making decisions around how are we going to treat someone. Piers Grove [00:08:13] Right. Kylie Tastula [00:08:13] That's sort of the very quick run through in terms of how we make determinations on who gets treated and who doesn't. Piers Grove [00:08:19] That's fascinating. I don't remember any of that. I remember being moved into a Covid, safe area in emergency and being left there for, I don't know how long, but it felt like a few hours. And that was that was, quite frankly, terrifying because I felt incredibly isolated. I didn't really have very good, speech. But I could recognise that I was potentially stuffed, that, you know, I had had a stroke. Yeah. And, you know, I sat there imagining, living in a nursing home. Kylie Tastula [00:09:12] Worst case scenario. Piers Grove [00:09:14] Yes. Yeah. I was very fortunate that one of my best mates, is a surgeon at the hospital, and he came down and visited me, and was allowed in with his deep duck beak, you know, PPE. But that was that was my only sort of salvation, during that time. What sort of treatments would I have received? I remember getting a lot of Valium. Kylie Tastula [00:09:50] Gosh. Okay. Piers Grove [00:09:51] Is that just to keep me from freaking out? Kylie Tastula [00:09:54] Quite possibly. Yes. Valium is most certainly not part of stroke treatment, isn't it? Because then it does tend to sort of hamper our assessment. But I think that's the, that was the big trouble we had in hospitals with Covid when everyone was very isolated, there was only minimal people allowed into certain rooms, and you weren't with other people. And it made things very challenging. So, and the stroke call process itself, we're very aware that time is brain for us. That's our mantra. Everything has to be done as quick as it possibly can. Which often means there's not a lot of communication that happens with the person who's in that bed, unfortunately. So it's something that I think we try and work on. It's depending on how many people are around in the team to how well that is done. But it can be something that's unfortunately lacking, and we are trying to address that to how we can do that bleeding forward. And I think these types of things actually help that, because that allows us to hear your experience as well, which is where we learned a lot of this from at the same time. But I think the stroke call process itself is set up to look at what we call reperfusion therapy. So time is brain, as we keep saying, that's our mantra, we've got a lot of time metrics that we have to meet and that surrounds the offering of two different treatments that we can provide. So there's the clot busting drug that we call it. I.V. thrombolysis. And that's, really potent blood thinner that we can offer people who are having a stroke. Ideally, it's within that first four and a half time hour window. So that means it's from the onset of your stroke. So for you, unfortunately, as you said, you went to bed and then you woke up with the symptoms. So we have to take it as a last well known time, which was when you went to sleep. And we need to be able to talk to someone who saw you at that time to say that you were normal and you didn't have any issues if you can't give us those answers, to be able to determine what that onset time was. Piers Grove [00:11:47] I was very drunk. Kylie Tastula [00:11:51] But I think you still would have been able to move both your arms and legs. Might not be coordinated, but they would have moved. Piers Grove [00:11:56] They did, they did. Kylie Tastula [00:11:57] So that's a lot of our questioning. Piers Grove [00:11:59] So I believe I didn't get the clot buster for the, for the very reasons you articulate. Kylie Tastula [00:12:06] You would know if you did yet. Piers Grove [00:12:07] Oh, really? Why why should I? What would what would have happened? Kylie Tastula [00:12:10] Because the consent process is often quite daunting, and there is a chance of, there is a chance of dying as a result of the treatments. So we do often, we would have spoken to you and your partner about it. Piers Grove [00:12:23] Ahh, okay. Is that because you can just bleed on the brain? Kylie Tastula [00:12:26] Correct, yeah. So you can bleed anywhere. So it's a really strong blood thinner. So you can end up with a lot of bruising and things just from, you know, general shaving, shaving, brushing your teeth, that sort of thing. But there is a risk of bleeding into the brain. So we are reasonably clear when we offer that treatment. But you wouldn't have been eligible because you were a wake up stroke in that instance. Piers Grove [00:12:47] A wake up stroke, I do, yeah. Kylie Tastula [00:12:48] That's what we call it when you wake up with those symptoms. Piers Grove [00:12:50] Yeah, but I've still got a clot in my brain. So how do you, how do you fix it? Kylie Tastula [00:12:56] So there are multiple different ways. There is that clot busting medication for people who are eligible for it. There's another procedure that has sort of come out in the last five years, which has been a game changer for stroke, which is what we call a clot retrieval. So that's a procedure that actually pulls clots out. So it involves an angiogram similar to what people have with their heart. And that can actually feed a wire into the brain and pull the clot out. But again it needs to be a stroke in a particular area. And we need to be able to actually see a clot. So whilst we say a lot of strokes are caused by clots, they're not necessarily clots in big arteries that we can get to because that procedure, again can perforate vessels and cause bleeding as well. So they need to be in an area that they can get to. So you didn't, I don't think you had either of those types of clots. Piers Grove [00:13:44] No. So did my, just what was a, you know, take two aspirin and wait for a little bit of blood thinning to happen or or did it to solve itself? Kylie Tastula [00:13:56] Yeah. Clots do dissolve themselves. So whenever the body makes clots, it will break those clots down. And it's just, it's the unfortunate ones that end up in the brain that do go on to cause problems. So if people aren't eligible for that reperfusion therapy, all of our treatment is then aimed at reducing those disability and trying to get early therapy and finding the cause of why you may have had a stroke, and whether we can treat that to reduce your risk moving forward. So whilst all the bells and whistles are around that reperfusion therapy, the biggest, biggest output and biggest reduction in disability I guess for us is stroke unit care, which is what you would have received. Piers Grove [00:14:35] Yeah, yeah. I had a remarkable improvement within. 72 hours. And from what I understand, the clot was. Putting was building up a lot of pressure inside my communications part of my brain, and once that released, a whole bunch of brain capacity came back and I could start, I could name my children. I certainly couldn't read or write, and I still spoke pretty poorly, but I guess I started to get some clarity in my thinking. I was able to begin communicating. So that was just sort of, the body taking care of it and recovering to some point of its own accord. Is that right? Kylie Tastula [00:15:39] Yeah. So what tends to happen when you have a stroke and we find this more in younger people than older people, when you get a stroke, the brain swells the same as what it does. If you were to get a swollen ankle, the swelling gets worse for a few days before it gets better. The same thing happens in your brain. So the swelling, we sort of say, is at, at its peak at that sort of 48 to 72 hours. And then after that, as that swelling starts to reduce, that's when you'll start to find what recovery you make. So depending on if it was a clot that caused your stroke, where that came from, how long, what was there for to how much damage it occurred. And then we need to wait for that swelling to start going down. And then you'll start to see improvement. So that's what would have happened for you. You would have had a lot of that swelling for those first couple of days. And as that started to reduce, you would have started to improve. Piers Grove [00:16:28] Yeah. Yes. Quite, quite remarkably, I, I thought like from being on the cusp of thinking I was permanently disabled and, keep in mind that my background is as a publisher of things like the Australian Geographic and, Junkee Media. Not like it was like having the, the knees taken out from a basketball player when, when I think when you lose your communication. So. Kylie Tastula [00:16:58] Speech is your whole world. Piers Grove [00:17:00] It really does. It really does. If I go back for a minute, the youth aspect of it is I recall someone saying, oh, you're a youth person. I was very flattered to be called a young stroke survivor at, 45. And then they he told me it was like up to 60 or 70. Made a young stroke survivor. What are the, what are the cut offs? Kylie Tastula [00:17:27] In terms of what we call a young stroke? We say that's about under the age of 50. But so for me, I run a young stroke clinic. So I allow anyone. So it's anyone under 50 automatically goes into our young stroke clinic. But I guess it's very different. And the way we try and look at it is because age doesn't necessarily matter, because biologically everyone's very different depending on what age they are. So we seem to look at it in terms of a working age stroke. So a lot of people who are still working full time, they're still supporting families, they're still doing all of those things. They they're still considered young strokes. So whether you be 45 or whether you be 65, if you're still working and you're still fit and healthy, I still think you considered a fairly young person to have a stroke. It's very different to, as I said, that experience of sitting in a room, being surrounded by eight year olds who aren't doing much. It's very different when you still go to work full time. Piers Grove [00:18:21] Yeah, I did say it and I this probably means I wound up in the wrong stream a bit. There was a bit of a sense that if you can go home and boil an egg and join the mates at the pub for a beer, that's that's okay. And that was not okay by me. Had two young children to support, and I still feel I have a lot of living to do. But yeah, I know like the bar was set way too low for me on some of those things, but it doesn't sound like I found you. Kylie Tastula [00:18:56] Know, but you're 100% correct in that I think health care is set up to look after the older person, and it's not necessarily set up to look after young people. And so we have a benchmark of, yes, if you can boil an egg, as you say, and you can get out of hospital, then we send people home or we don't necessarily address that whole transition back to real life. And I think a few of the conversations I've had over the years, especially with our young stroke survivors, have had the exact same issues you have in terms of if you've got a life to live, you've got to get back to work, you've got young children. There's all these types of things. So that's why we've actually set up our young stroke clinic in the last couple of, well, the last 12 months. But that was a Covid thing that we couldn't do it face to face. So it made it a bit more challenging. But it's exactly for that reason. So we can bring people back a lot sooner than what we do traditionally with stroke, because I think that transition back is actually quite challenging, and it's not something we address well in hospitals at this stage. So I think your experience was completely normal for most young stroke survivors, unfortunately. Piers Grove [00:19:58] I will give you some, humour because I was put into a private room in the stroke unit largely because of the, the Covid. Yeah. And then, I think it was on day two, I'd been cleared of Covid, and I was taken into the ward, right next door, which was filled with fairly broken old people, to be blunt, and I had spent a lot of time in the RPA the, the previous year for, diverticulitis surgery, and I wouldn't have a bar of it. And I instinctively was last seen running toward the exit with my bum hanging out and my MacBook air under my arm as they're, like. Let him out. Let him out. They didn't know what was going on, but they did let me out. And I managed to collect myself by the vending machine, and they quite quickly put me back into the private room again. Kylie Tastula [00:21:08] Yeah, it is. It is very challenging because while we say young stroke, the rates aren't that small. It does feel like it when you're in there on your own, because the vast majority are still older patients. So our average age is still about 70. But it's just for us. It's not unusual to have someone young come through that for you sitting in that room. It is very confronting and we do need to get a lot better at having those conversations. Piers Grove [00:21:35] Look, I mean the, the quality of the care was excellent. Particularly given that I was in there on a weekend, and we know how much doctors loved working on the weekend. So you're largely in the hands of the, the nursing team. And, yeah, it was very good. I just got very frustrated on the, on the Sunday because there was really no movement. Kylie Tastula [00:22:08] Nothing happening. Piers Grove [00:22:08] Nothing happening. And I was still isolated. Yeah. So rather than talking about me in my own experience. So young stroke survivors sort of, or victims as they are in the first instance. Kylie Tastula [00:22:26] Who I like to call survivors. Piers Grove [00:22:28] Yeah. Yeah, I don't know. To me, it was a psychological shift from being a victim to being a survivor. Was was, sort of a an empowerment decision on my part. Kylie Tastula [00:22:41] Very true. Yes. Very true. So how common are they? Well, so I work in an adult hospital, and the youngest I've traded is 14. So it's not uncommon at all. I've had quite a few teenagers and things come through, but the Stroke Foundation say about 30% of strokes in Australia are under the age of 55. So they're still of that working age demographic. So it's not uncommon. It's not uncommon for us to routinely have someone in their 30s and 40s, unfortunately in hospital. And I mean, I've managed to run a clinic full of young stroke survivors, so. Piers Grove [00:23:11] Yeah. Kylie Tastula [00:23:12] It's not as uncommon as we thought it was once. Piers Grove [00:23:15] But the support for them is a little bit invisible. It's not, not there. It's just that nobody sees themselves as a potential young stroke survivor. So I guess it's like being diagnosed with anything you didn't think you were going to have. And you, you, you know, Google becomes your friend and you try to learn. Kylie Tastula [00:23:43] Or your enemy. Piers Grove [00:23:44] Or your enemy. Of course, you got to, you've got to keep your doctors and nurses nearby too, that there is something good to, you know, just learned that there are other people out there and that they, they have returned to full lives. Kylie Tastula [00:24:05] And I think the hard part is, is when someone has a stroke, there's no warning. It's all of a sudden your entire life has changed. So you sort of that emotional shock and the trauma you're going through, you've got to get over that before you can then start hearing what everyone's telling you as well. And so I think people are in hospital for such a short space of time that a lot of that education, the opportunities that are missed because you're not in the headspace to hear it as well as you said, you need to go from that victim to the survivor yourself. And so you're dealing with the trauma of it. Whereas we for us, it's sort of routine, run of the mill. We're doing the same thing that we do every day. So we don't necessarily take the time to immerse yourself into it either. And I think it's that very hard line as to when to do it. What's too much information, how to provide that information before you go home and you're floundering on your own and Doctor Google becomes your best friend. Piers Grove [00:24:58] Yeah, yeah. Well, look, I'm going to have to come clean and say I was a terrible patient for a lot of the reasons you just touched on. So I had had a lot of time in that hospital the year before and, yeah, was, ileostomies and it was. Kylie Tastula [00:25:22] And it comes with a lot of trauma. Piers Grove [00:25:24] A lot of trauma. Two very bad cases of sepsis. I did not want to be in that building at all. And while I was, they, they told me I should be there for two weeks. And on the second day, I declared that I was going home. They convinced me to stay for the third night, which got me through, oh the second night, which got me through to Monday. And by God, did wheels move fast. I didn't really think they were going to take me seriously if they did. They sent two psychiatrists along to see whether I was capable of making decisions, which apparently I was, even though I couldn't really talk. It seemed very odd. Yep. And, you know, I got out of there and I went home. I lay in bed for five days, and then boom, I went back to work. And it was like almost an adrenaline. I couldn't read, I couldn't write, I could talk, I found if I spoke really loudly, my speech was pretty good. And I went back to work and I had 67 staff, and it was the stupidest thing I've ever done. I held it together for about six weeks and then. Boom. I just kind of had. Kylie Tastula [00:27:12] Collapse in a heap. Piers Grove [00:27:13] Yeah. So yep. A hugely unique story there by the sounds of things, Kylie. Is that a fairly common-. Kylie Tastula [00:27:21] Very. It is and I think I think that's a lot of the problem. I think a lot of the young strokes, they either do really well or really badly in terms of they're in hospital for months getting rehab and things like that, or they're like you where they've got some issues, but they just don't want to be in hospital or the hospitals at capacity. So we're trying to move people out. And I think it's that transition back into your real life where you think physically you're actually okay, so you can get back to work, you can do everything that you're doing before, and it takes a while for you to realise the fatigue kicking in, the mental fogginess all of that sort of stuff, to how much impact it has actually had on your life, and to slow down a little bit. And I think that's where it's the hard transition for most young people. Piers Grove [00:28:08] It, it is for me, it's it's all the sleeping symptoms that don't make sense to me, that just don't know. Makes sense. I don't understand, why my ability to emotionally regulate myself has fallen away. I had my first ever manic, followed by deep depression, over, over Christmas. And these are not things I'd encountered. And I did not expect them. I dealt with a lot of anxiety, not, not that sort of stuff. And it's put me on my sort of heightened state of awareness about, you know, when is this over? When you know and I know I've spoken to other young stroke survivors and they almost all say, oh, everyone thinks I'm fine, but nobody actually knows that I live with this thing every day. Yeah, it's. Kylie Tastula [00:29:16] It's the trauma around having a stroke. I think that's enough to put everyone into a spiral, no matter what age you are. I think that very much that happens. But it's also your great grief. You're going through a grieving the same as you would if a love person, a loved one, dies. Because all of a sudden everything has changed in life. And so you've got to grieve that process the same as what you would everything else. But you've also got that underlying anxiety of, is this going to happen to me again? What have I done? How can I try and prevent that from happening again? And all at the same time? You've got a brain who's trying to recover from having damage to itself, which is exhausting for the brain. And so it's trying to keep up with everything that you're putting it through at the exact same time. Like if someone has surgery, they lie down and they let that surgical wound heal. This, a stroke. You can't see that. So you don't realise that it needs to heal the same as what anything else does. And so I think it's all the pressure everyone puts on themselves as well. Especially for a young stroke survivor like yourself. You've got to get back to looking after family, looking after friends, looking after your job, doing all of those things without giving yourself time to actually grieve. Go through it all that you should, how you should be. Then you often find 12 months after the fact, is when you do start to fall in a heap because you haven't taken that time. Piers Grove [00:30:34] Yeah, yeah. It's fascinating. Yeah. Kylie Tastula [00:30:37] And because five days is not a lot of time to recover from a stroke. Piers Grove [00:30:42] And it was almost a determination to revalidate myself in, in my community and demonstrate that I was a valuable, contributor and I wasn't going to be sidelined. Yep. But it's also fascinating for the families and the co-workers. I had a fairly new relationship. It was a couple of years old with, with Jane, my fiancé. She didn't know what this was about. She didn't know how to, to care and support me all that well. I mean, this. I feel like I dodged a bullet and came out of this thing in pretty good nick. But I imagine there's a lot of people who don't get their communication back or their mobility back. And that's a very different situation for a family to encounter. It's more like a car crash victim or something along, along those lines. How do the families go when a member of the, of the team collapses on them? Kylie Tastula [00:32:04] I think everyone deals with it in very different ways. I think a lot of the families, you'll either find they rally at the at the beginning, and they do really well. They're there 24 hours. Everything that required they're there to do. And then they sort of collapse in a heap a few weeks down the track, or they just don't know how to deal with it at the beginning, and they just then flounder for the whole time. And it's, it's really hard because we can't predict how well someone's going to go from their stroke either. Like we have no idea of what your recovery is going to look like. We can make an educated guess, but we can't say to someone, they're going to be perfectly fine. They're going to go back to real life. But it's also I think the problem with stroke is if it's especially if it's speech and cognition is your problem, there's no physical disability to see. So other people around you don't realise what you're going through, because we can't see that. If someone can't move an arm, then that's an obvious disability, that someone can say that the average person in the community doesn't know what you're going through. And I guess we're not very kind to people when they're going through things, either, because we don't know what's going through the other person's head. And I think your families would be the same. Jane wouldn't have had a clue what was going through your head, wouldn't know how to address those issues and wouldn't even know the first place to start. And it's easy for me to sit here and lecture people and tell people what to expect and what to feel. I haven't been through it myself either. So people don't necessarily want to listen to that from coming from someone who hasn't been through that themselves either. Piers Grove [00:33:33] Well, it is interesting because it's, there are these stroke survivors all through our society. And once you become, attuned to finding them, they start popping up everywhere. I remember the guy at Dan Murphy's. Was like, you've had a stroke, mate, because I couldn't. I couldn't read out, the order number for my phone, and I just said, I'm sorry, mate. I've just, just had a stroke and he's like I had one, and you know. And he became my ally, and I made sure that I turned up at Dan Murphy's when I knew he was working. Kylie Tastula [00:34:16] He was rostered on? Piers Grove [00:34:17] Yeah. And slowly, over time, other people came out of the woodworks, who were able to share their experience. And there was this depth. Of a camaraderie almost. Within the, the community. That was very. Yes, it showed me that other people were getting on with their lives and I hadn't even noticed. And yet they had it. Kylie Tastula [00:34:48] But sort of it's that taboo subject, I think. And young people don't necessarily want to admit that they've had a stroke, because I know a lot of young people don't have workplaces that are supportive, so they end up having to hide a lot of these things because otherwise they're going to lose jobs. And then financially, they're all insecurities and things. And so I think people don't necessarily want to talk about 'I had a stroke when I was 30'. They don't want to own up to that because people will look at them like they're not necessarily contributing to society the same as what they did. I remember the 14 year old boy I was telling you about, and they won't mind me saying this because I went on TV and said the same thing when he was returning back to high school. The high school didn't want to tell people what was going on because they didn't want to scare everyone into, this could be what your future is or this is what happens when you're 14. You can have a stroke. And his mum was very adamant that people should get told because she had no idea that you could have a stroke at that age. So she wanted to raise awareness. And I think it's trying to break those taboos that we can actually talk about these things, and people can own up to them, because you do. You'll find more and more people out there who have these problems. Piers Grove [00:35:55] I guess I wanted to share my experience. I have been self-employed for my whole life, and I just found like, well, as I said, some of this is cathartic for me, but I just wasn't that inhibited about it. I had two very different sets of colleagues at, the publishing business where I had, a cohort over 55 or 60 who all assumed I was going to be cactus, that when I came back, you know, that said, oh we won't see Piers for at least 3 to 6 months. And, you know, we'll see what's left. Kylie Tastula [00:36:48] If he comes back. Piers Grove [00:36:49] If he comes back. And then I had a cohort of young, under 30 employees who didn't really know what it was about. And kind of thought it was like a heart attack, and. Well, he'll he'll get back and they'll fix him up, and. Kylie Tastula [00:37:11] He'll be fine. Piers Grove [00:37:12] He'll be fine. And neither of them were right. But, brain plasticity seems to be something that, gave me an opportunity to recover better than the older cohort imagined. Is there, I mean, does a 14 year old bounce back three times better than me, and I bounce back three times better than the 70 year old? Kylie Tastula [00:37:44] Again, it depends on so many factors. It depends on how fit and healthy you were as a 40 year old, how fit and healthy you were as an 18 year old, there are going to be the 18 year olds who have got congenital heart problems and they're having a stroke, so their baseline isn't as good as what someone else's might be. So I think a lot of it being young, it's the fact that you are reasonably fit and healthy, you're already active, and there's probably a lot more motivation to get back to doing things. The causes of strokes might be a little bit different, so the severity of stroke might be a bit different. The older you get, it tends to be a bit more of a severe stroke as well in some cases. So I think every case is very, very different. I've looked after some young people who've done unfortunately very badly, and I've looked after older people who have done amazingly well. Piers Grove [00:38:28] Yeah. Kylie Tastula [00:38:28] So I think biological age is a lot different to chronological age sometimes. Piers Grove [00:38:34] That gives me no comfort at all, because I have treated my body like a garbage tip for the first. Kylie Tastula [00:38:42] Like a temple. Piers Grove [00:38:47] At which cigarettes and wine and, Hungry Jacks were served with far too great a regularity. But. Kylie Tastula [00:38:59] I think that's the majority of young people. Piers Grove [00:39:01] Yeah. Yeah, there is that, there is that element to it. Yeah. Kylie Tastula [00:39:06] But baseline your fitness is a lot higher than what the average 80 year old's wall is. Piers Grove [00:39:11] Yeah. Yeah. So you think it's just overall ability to recover, even whether it's the brain or it's the, the hip replacement. It's just you got to fix yourself. Kylie Tastula [00:39:26] Yeah. I think young people tend to do better. Yeah. Yeah. And I think I think the motivation is a bit different in things as well. But I think going back to it, I think what you're doing here in terms of the podcasts and things, and I think it's that raising the awareness around young people having strokes because it is such that one extreme to the other. We all see our grandparents who had strokes, who didn't recover. Or you just assume that everyone gets well because you don't know. There are those young people out there who are talking about this. So I think the work you're doing with the podcast, the Stroke Foundation, the Stroke Recovery Association, do a lot of young stroke things. And I think that is what's going to help it as well, because I think it's the recognition that causes a lot of problems. People when they're young don't think they're having a stroke, so they don't necessarily get the help that they need. And then they get to hospital. And there might be a bit of judgement in emergency departments that don't necessarily recognise that people are having a stroke. Piers Grove [00:40:19] Yeah. I, a colleague of mine had a stroke about a month after me. She was a little bit older, maybe, early 50s, mid 50s. And she didn't recognise that she had a stroke. But she couldn't swallow. So she stopped eating for two weeks, and, then took herself into hospital. Then got a really badly infected heart and was in iCU for about two months. Well, but it took them a long time to realise that potentially it was a stroke that was behind. Kylie Tastula [00:41:09] Stroke at the beginning. Piers Grove [00:41:10] Yeah, yeah. So, I read somewhere that only 1 in 3 stroke survivors will get an ambulance to a hospital. Kylie Tastula [00:41:22] Yeah. So the Australian data shows that it's about 45% of people get to hospital in time for the clot busting medication. So that's under 4.5 hours. So there's a, and that varies depending on where people live. So I think socio economic, or cultural all of those sorts of things have a huge factor in it. And but rural and regional Australia, the rate of people getting to hospital in time for treatment is a lot less than what it is in metro, Metro Sydney, for example. But yeah, it's that recognition that is quite poor and often especially young people. They'll be out for dinner the same as what you were, and someone did a first aid course the week before and they were taught about FAST. So that's why they got someone into hospital who was at the dinner table with them. And it's only those people who have been affected by stroke themselves in some way, whether it be a first aid course or they know someone like yourself that's had a stroke, that actually will then encourage people to turn up to hospital. Otherwise, you know, you don't eat for two weeks because you can't swallow. I wouldn't think that was normal, but most of us will sit at home and ignore those symptoms. Piers Grove [00:42:27] It is amazing what people put up with. So are there people out there who have strokes and never get treatment? Kylie Tastula [00:42:36] Yep. Most definitely. So a lot of people might have silent strokes, but they don't necessarily notice the symptoms that they're having. But there are a lot who might have symptoms that only last for a day or two. And they go away. So they think, well, it's gone away. I won't worry about it now. And so they don't get treated. So if someone comes in we might find that they've had several strokes in the past that we can see on scans that they haven't been aware of. Piers Grove [00:42:59] Yeah. Kylie Tastula [00:43:00] And they've obviously gotten along with their lives jus t fine. So it has an impacted them. But it's then looking for us a secondary prevention. What caused that stroke. What can we do to stop it happening again in the future? Piers Grove [00:43:10] What are the likelihoods of, you know, having a second stroke compared to somebody who's never had one? Like, like me? Am I much more susceptible? Kylie Tastula [00:43:22] The risk factor is higher. So have a risk factor for stroke is having had a previous stroke. But it's then looking at what caused your stroke. A lot of young strokes. We don't necessarily find a cause for it, but it's making sure you then address all of your own individual risk factors to reduce the chance as much as you can after that. So the things like smoking, exercise, those sorts of lifestyle factors that you can change will be what reduces your chance of having a stroke. Piers Grove [00:43:49] It's a murky and un sort of tapped area around lifestyle and all this stuff because you kind of have to start taking it seriously, but you're not necessarily in the right mindset to take it seriously. I had a in, in an inevitable sense of, my own mortality for probably 2 or 3 months. Every day could be my last. Happily walking along the street, checking, checking my tongue in each cheek, to see whether I was in the midst of another stroke. Yep. And, feeling like a massive loss of agency over my own, life journey, which you will be delighted to know I fixed by taking up smoking. And. Well, it was like I smoked a little bit when I, when I had a glass of wine, but after the stroke, it was like, you know what? The one thing I can do is go outside and have a cigarette. Kylie Tastula [00:45:07] Reduce the anxiety. Piers Grove [00:45:09] And I'm now working like hell to get that back out of my life, which has been fascinating. But it speaks to the sort of the strange reactions that, you know, I think people can have. Kylie Tastula [00:45:26] And it's the extremes, I think as well, because you've lost control of your body, as you said. You sort of no longer in control. You've had to sort of face your own mortality at some point. And so some people tend to go to one extreme or the other. They tend to all of a sudden become an absolute fitness guru. They don't want to eat sugar again. They'll never do anything that's bad. But I also think neither of those are sustainable either. Like, I think it's very much everything in moderation. Like I'm not going to ever lecture someone about their lifestyle choices because 100% everyone knows that smoking's bad for you, but that's your choice to do. We know what it can do, but you also have to do things when it suits yourself as well. Yeah, like until you're ready to give up, until you're ready to change, it's never going to work. Someone lecturing you is not going to change that. Piers Grove [00:46:15] No. That's true. Particularly with a stubborn bastard like myself. Kylie Tastula [00:46:21] Yeah. Yep. How? Which will work in your favour in the long run? Piers Grove [00:46:29] Yeah. Yes. That is so good to hear. And, it's very fortunate to have dedicated professionals like you who, so seasoned this stuff that you can actually relate to everything that, you know, I have been through in the challenges of being a young stroke survivor. Tthank you so much for the work that you do. And, I hope that I never, ever have to visit you. Ever again. Kylie Tastula [00:47:05] I also hope I never see you again in a hospital. Piers Grove [00:47:08] Yeah, yeah. It's a it's a funny, funny relationship of huge gratitude. And, just sort of impressed by the, the team and, and and Covid when it was so stretched and yet the, the, the professionalism and the service that your team provided, I hope to never, ever use ever again. So. Kylie Tastula [00:47:37] Fingers crossed, I think the same way. Piers Grove [00:47:39] Yeah, yeah. Look, the the search for the, the cause of the clot was like a a very amusing, whodunit with our testing, and they couldn't find anything and bubbles in my heart. I didn't like. Kylie Tastula [00:47:53] I mean, like, if I got any more blood to take and. Piers Grove [00:47:59] Yes. That takes me back to my my diverticulitis. Yes. But look, thank you so much for taking the time to chat with me. It's been really enjoyable. But most importantly, informative, conversation about, you know, what this bloody stroke thing is and and how it actually unfolds. Because we don't remember. We don't have those inside. So I wish everyone, could, could have a chat with someone like you, but hopefully this, podcast will be a placeholder for them and they will get something from it. So thank you so much for your time today. Kylie Tastula [00:48:44] It was my pleasure. And thank you for inviting me. It's amazing. Piers Grove [00:48:52] That was Kylie Tastula from the Stroke Unit at the RPA Hospital in Sydney. If you know someone who has had a stroke, please let them know about this podcast. Thanks for listening. Piers Grove [00:49:05] Stroke Foundation Australia is a proud friend of 404: Brain Not Found. For more resources and support on stroke, head to Strokefoundation.org.au or call stroke line on 1800 787 653. [00:49:28] This podcast was produced by General Experiments.

Transcript for episode 3

About
Kylie Tastula

Kyie is Nurse Practitioner in the stroke unit in the Royal Prince Alfred Hospital. She has also worked with the NSW Stroke Recovery Association, the Agency for Clinical Innovation, and Sydney Local Health District. Kylie provides care to patients with stroke and their families. Her achievements include developing a state-wide Endovascular Clot Retrieval (ECR) and Virtual Reality (VR) module for hyperacute stroke, a peer mentorship program across 23 rural sites in New South Wales, as well as being the lead nurse for the inaugural NSW Stroke Ambulance Model of Care development. In 2022 she was awarded the Stroke Foundation and Stroke Society of Australasia 2022 Stroke Care Champion Award.  

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