- The last memory I really have is driving in and getting to A&E and, yeah, Mum stopping outside the doors, and sort of half walked, half carried into A&E, and then I don't really have any memory of that until I woke up in ICU in Dunedin. I was in a coma for nine days. The total time in hospital ` it was over 100 days, about 110, 120. My main passion is riding. Before I got sick, it was a massive part of my life. Since amputating, I've still been able to ride. It wasn't gonna let that stop me. Hi. I'm Aleina Beer. I'm a massage therapist, I'm a pony club coach and a rider, and I am a meningitis survivor. Ugh! (CHUCKLES) Captions were made with the support of NZ On Air. www.able.co.nz Copyright Able 2023 (PENSIVE MUSIC) (DISTANT BIRDSONG) Four years ago this October, I contracted meningitis and septicaemia and went into multi-organ failure. As a result of that, I have quite a few ongoing issues. One of the things that happened from the meningitis was that I got multiple infections in my right ankle. The surgeons tried to save it for quite a while, but in the end, I ultimately decided to amputate just for a better quality of life. When I got meningitis, initially, my kidneys did fail, and I was on dialysis for about six weeks at that time, and then they kind of woke up again and started working a little bit. The doctors did tell us that they would fail again; it was just when we didn't know. So, then they started going downhill, and they went downhill reasonably quickly. (SIGHS) Um, so they had to get me back on dialysis again and sort out getting a transplant. Yeah. When I go home to Mum and Dad's farm, usually every couple weeks, I have to take my machine with me, which is in a big black suitcase ` it's not very light (CHUCKLES) ` and a box for every day. It's a glucose concentrate fluid. Each box contains six litres of fluid each. I use one of these boxes each night. So, my car's not very large, so I can't, generally, go for too many days at a time. (PENSIVE MUSIC) Before I got sick, I always thought I was invincible. You hear of other people getting these illnesses or terrible accidents happening to them, and I always thought, 'Oh, no, I'm healthy. 'It's never gonna happen to me.' And then, you know, it just hits one day, and you wake up and it's like, 'Oh, my gosh, so much has changed.' (SHEEP BLEAT) Definitely be a country girl at heart. It's nice to be able to get your hands dirty and get a sweat up. It's quite enjoyable. (SHEEP BLEAT) (BIRDS CHIRP) (HANDBRAKE GRINDS) - Hello. - (GRUNTS) - How are you going? - Good. Good. - Good to see you again. - Yeah. - Who's here? Hi, hon. - Hi, Mum. - Mm. (BOTH CHUCKLE) - 'When I first came back here, I was still quite sick.' - NIGEL: They're not getting any lighter, are they? (JAYNE LAUGHS) - 'I mean, I was still recovering a lot. 'I'd spend most days just inside, either sleeping 'or trying to relax and eat and build up strength again.' (PENSIVE MUSIC) - I found this album of photos that we copied off for... while you were in Dunedin. This was when you were, (INHALES) uh... - ...in a coma. (CHUCKLES) - No, th` (CHUCKLES) I never once thought that you weren't gonna wake up. It was just... I never allowed myself to think you weren't gonna wake up. But when you look at it now, it's like` you were so close to not being with us. - Very near death. Yes. - Mm. - Very lucky, cos a lot of people in that situation haven't` haven't made it. - A lot. There's not many that have. Hm. - Mm. - Yeah. No, it's... - Mm. Mm. So, I went to bed, and then I woke up about midnight, um, and rushed to the bathroom, vomited. - Went to A&E, and she got seen by a doctor, but he didn't see any concern to take` um... to be alarmed or take a blood test and that, and he said, 'Just go home.' - But then I was back, um, throughout the night, getting up multiple times to vomit and getting hot sweats; um, nauseous, dizzy; um, getting a fever. And then it got to the early... probably 5, 5.30 in the morning, and I called out to Mum, and she took me back into hospital. And I remember driving in, and I was` I was trying to tell Mum to hurry, cos I just` I felt myself kind of just going down this steep hill, um, getting worse and worse. Yeah. - They didn't say how serious it was, but telling by their actions and what they were doing, we knew it was very serious. Deadly serious. - The doctor said that her lungs and her liver and her spleen ` like, her major organs ` were virtually starting to shut down. Then they said, 'We're gonna put her in a coma.' It was pretty... surreal, really. You just didn't believe it was happening. Because the day before, she was perfectly` well, as far as I knew, she was quite well. Then, next minute, you don't know whether your daughter's gonna be alive. Yeah, it was... pretty unreal, really. (PENSIVE MUSIC) - I was in ICU for a total of three weeks, uh, and then from there, I was taken to the renal ward, and there I was... about three months, and from there, I was discharged. Yeah. (PENSIVE MUSIC) The person I was before I got sick is a completely different person to who I am now. You know, you can't compare. I was on very different paths to what I am now. 'I don't think I'd be able to handle it if I couldn't get back on a horse. 'Whatever the outcome was, the goal was always to get back on.' - JAYNE: What are you gonna do today? (SIGHS) - I wanna jump. - No, you're not. (BOTH LAUGH) No way. - No? Thankfully, I only lost one leg, so it wasn't too hard (LAUGHS) to get back on. (HORSE NEIGHS) They're another family member, really. We've had horses ever since, you know, I was little. - Is she gonna stand? - Before I got sick, it was a massive part of my life. I liked to event, show-jump, dressage, was heavily involved with pony club... Since amputating, I've still been able to ride. I wasn't gonna let that stop me. (UPBEAT TECHNO MUSIC) I can't event anymore, just cos of rules and regulations, but I can show-jump and do dressage, especially with the magnetic stirrups I've got. They're really helpful. It's a little bit different. (LAUGHS) Um, balance is probably the most important thing. So I always test things out first ` like trying to balance over one leg and the other, um, and just building strength up to be able to do that. - Oh, I think we're all a wee bit in awe of her, because I think she's trying to prove that you can still ride a horse (CHUCKLES) with one leg. As you get better at riding, your legs do all the stopping and starting and turning and balance and all that. - I feel like I can still do most things able-bodied people can; I just have to adapt a little bit and just be careful about how I go about doing them. (PENSIVE MUSIC) I've moved to Dunedin just to be closer to the hospital, closer for appointments, closer to the Limb Centre... and for when I do eventually have a kidney transplant. At the moment, I'm on the deceased donor list, so if I get a phone call from there, it'll be straight to the airport to fly up to Christchurch, where it'll happen pretty quickly. My mum and my older brother have both offered to donate a kidney as well. - Both Nathan and myself are not a match, so now we're both going in to... testing to see if our kidneys are healthy enough, um, to go into the donor system, which is the, um, trans-Tasman live donor system. - I'm going to see Dr John Schollum. I've known him since I got sick, almost four years ago, and he's been with me all through this journey, really, as my renal specialist. - Hi, Aleina. Come in. - Oh, thanks. - Have a seat. - Thank you. - Hi, Aleina. How are you? - Yeah, not bad. - Not bad? Any issues? - Not really. It's been pretty good. - Really? - Hm. - So, you've, obviously, come in today to talk about transplantation. - Yup. - Um, and I know that you're aware that you've been active on the deceased list... - Yeah. - ...for some time now. - Yeah. - Because you don't have a lot of antibodies, there's a high chance you'll get offered something fairly soon through the kidney exchange programme. - Ooh. How quickly? - I would be` I'd be thinking that we'd probably... hopefully within three months, and I'd be surprised if it's more than six to 12 months` - From now? Or from when`? - From when you're accepted. - Ah. Cool. I've gotten used to putting my expectations, like, way down here. So I'm like, 'I'm gonna be on dialysis for 10 years.' (CHUCKLES) You know? Anything else happens before then, then it's like, 'Whoo!' (CHUCKLES) - Well, we can't guarantee anything, obviously. - Yeah. - Once you start getting offered one, you tend to get offered multiple... - OK. - ...because of` your waiting time points... - Yeah. Yup. - ...start having a strong impact. But I would hope that a match comes up very, very quickly. - Yay. Cos I think I'd get sick of dialysis after... Doesn't feel like it's been six months that I've been on it, and` - No. - (CHUCKLES SHORTLY) Yeah. That's interesting. Mm. Cool. Very good. (THUNDER RUMBLES IN DISTANCE) Today I'm gonna go and do some coaching with a couple of pony club kids. We're gonna go to the indoor arena, cos it's very miserable outside. (HOOVES CLOP) Hey. - Hi. - You wanna come tie up? And we'll tack. Yeah. It's all right. - It's OK. - (CHUCKLES) Just put your` uh, lean back a little more. Bend your knee. Sit up a little straight. Yep. 'Since I've moved to Dunedin, I've got in contact with a few different clubs in the area. 'Just made myself available for lessons if anyone wants them 'or if they want me to coach at pony club in the coming season as well.' Good. OK, thinking about the hands. Look in the mirror as you go past. (HORSE SNORTS) Keep that right one same level as the left. 'The response has been really good. 'Got a few regular riders that I'm coaching now. 'I enjoy coaching kids,' especially really responsive kids that listen to what you say and try to do their best. Um... yeah, it's cool to see them progress after each lesson and in between as well. (CHUCKLES) Yup. This is good. 'It would be one of my happy places, as well as being on the horses.' - I think she's absolutely incredible. Like, the way she does everything she does, and, um, everything she goes through and still, you know, makes her time to come and help us out and just give us lessons and everything. Like, that is really cool. I find it challenging enough (CHUCKLES) with these stirrups and just` even riding myself. I think it's absolutely amazing how she does it, and... definitely, I dunno, makes them work better than I can, (CHUCKLES) really. - Having kidney disease, it is very tiring. I can't do much throughout the day before I get knackered or exhausted. (PENSIVE MUSIC) I've been on dialysis now for... six months. I'm on what's called peritoneal dialysis, so I have a catheter that goes into my tummy, into the peritoneal space, or cavity. (PD MACHINE BEEPS) So, for a start, I was on day fill, so I'd put two litres of fluid into my tummy, and through osmosis and diffusion, it would draw out water and the other stuff that your kidneys would usually do. Two, three months ago, I went on to night-time peritoneal dialysis. It's called automated PD. So that's when I would just hook up to a machine at night for 10 hours, and the machine would constantly do that cycle ` so two litres in, leave it there for an hour and a half; then it would drain out, and then put another two litres in, and that would go constantly throughout the night. That's what I do every night. The noise ` it's just a gentle wearing noise. It doesn't bother me too much. (PENSIVE MUSIC) (PENSIVE ELECTRONIC MUSIC) This morning, I've been invited to go and talk at one of the local radio stations about my journey and meningitis. The only thing I really knew before I got sick was, 'Don't share drink bottles ` that's how you get meningitis,' but didn't really know what it was or how else you could get it. But, yeah, I know quite a bit now. - Hello, Aleina. - Hi. - I'm Dave. Lovely to meet you. - Nice to meet you. Yeah. - Welcome to Radio One. Um, we'll get started. We'll go through to the recording studio. - Cool. - Your experiences have changed your life, but I think a testament to you is that you've taken that and turned it into an incredible positive by spreading awareness. - Well, I mean, after I'd left hospital, I was... must've been looking at, um, stuff about meningitis, and I thought that, you know, I needed to start... informing other people about the vaccines, because I didn't really want what had happened to me (CHUCKLES) to happen to anyone else. I've also been going round a couple of schools and just doing a talk about what had happened to me and telling them about signs and symptoms in meningitis and talking about the vaccine and... yeah, just trying to, um, spread the knowledge about it. (CHUCKLES) - Mm. - Yeah. The best way to prevent meningitis is the immunisations. There are free vaccinations for uni students in the halls, and that population, they're most likely to get meningitis, so I think it's really important that they are aware of that and knowing the signs and symptoms. - Wonderful. And, um, just to` I think we should clarify that. It's` The vaccine's free for people under 25, but anyone can get it. - Yes. - So don't, um` don't be too cheap. (BOTH CHUCKLE) Have you seen, like, the effects of what you have personally done, um, do good in the community or make an effect in the community? - Well, I have, um, just a few different people message me or talk to` come up and talk to me and say that, you know, 'My daughters are going off to uni, and we made sure that they got the vaccine,' and it's like, 'Oh, that's so good.' (CHUCKLES) - Yeah. - Makes me happy when I hear that sort of thing. Yeah. - Thank you so much, Aleina. - That's OK. - Really appreciate this. - Thanks. - And, yeah, we really appreciate you coming and telling your story. - Yeah, it was fun. I enjoyed it. - Yeah, that was good, wasn't it? (PENSIVE ACOUSTIC MUSIC) - I trained as a sport and therapeutic massage therapist at the Southern Institute of Technology in Invercargill. I haven't been working since I started dialysis, I think, but I've actually got a job now up in Dunedin. I am only gonna do one, two, maybe three massages a week and then build it up a little bit, depending on how I'm feeling. (PENSIVE MUSIC CONTINUES) (BIRDS TWITTER, SHEEP BLEAT) We going? - Ready to go, are we? - You have to go round the other side. - Yeah. - OK. - I'll sit on this side. - You hold the dog. Oh, just kidding. (ENGINE RUMBLES) Obviously have bad days. It's not always fantastic. Yeah, do get a bit down and think about, 'Where would I be if this hadn't happened in my life?' But, I mean, you can't do anything about it. - 'Way you go. (SHEEP BLEAT) She's a tower of strength. Mentally and physically. She's never had a doubt in her mind ` I've never seen it ` that she's gonna give up. Just` Just not an option. (PENSIVE MUSIC CONTINUES) - Well, that was easy. (CHUCKLES) The first thought that crossed my mind once I'd healed a little bit was I felt like I could empathise with a lot of other people now. Just being really sick and being in hospital for long periods of time, having an amputation ` you know, going through all these different things that have happened, I feel like I can empathise with a lot more people. - Talking to specialists and that through the days, they're saying, you know, there's only probably one in 10 people in the world that have survived the severity she had it to still be here. Um, I don't know why she's still here, but I think it's great that she's putting it positively now and educating people on how to beat this, because it's just a killer. A fast killer. (PENSIVE ACOUSTIC MUSIC) - Looking forward, I'm gonna start getting my horse back into work. I'll probably take him to Dunedin and then start competing, hopefully. But otherwise, the Paralympics would be nice, one day, to do dressage at. (LAUGHS) Come on. She's a little bit, 'Oh, oh, oh!' Good girl. Good girl. Have a look. Good girl. CHUCKLES: Good girl. Come on. I try to set goals and just focus on them. Not really long-term goals at the moment, because it's hard with needing a kidney transplant, and there's no timeframe for that, so it's more short-term goals ` what am I gonna achieve in the week, what am I gonna achieve in the month? - JAYNE: She does have courage. She has times where she's quiet, but it's not been a smooth journey, and she's had a lot of downs more than ups. So she knows there's gonna be limitations and that, but as far as she's concerned, those limitations are only what you put on yourself, and she's not gonna let them hold her back. She's pretty driven. - Out the way, Chrissie. You're good. Chook-chook-chook-chookies! (FEED SCATTERS) I put it down to, mostly, the way I was brought up ` I mean, on the farm and with Mum and Dad, we were kind of just taught to get on with things, get stuck in and get things done. (LAUGHS) And it's kind of just the whole attitude to how I live as well. (PENSIVE ACOUSTIC MUSIC) Captions by Maeve Kelly. Captions were made with the support of NZ On Air.