Welcome to the HeartKids Podcast. Join us as we explore stories of Australians impacted by childhood heart conditions. I am one of your hosts, Samuel Stolberg. I was born with a congenital heart condition, and I had my first open heart surgery at the age of 26. Before we begin we'd like to acknowledge that we are recording on the land of the Gubbi Gubbi peoples, otherwise known as Queensland’s Sunshine Coast. We acknowledge Traditional Owners of this land and the land that you're listening in from today. We pay our respect to Elders, past, present and emerging. Today, I’m chatting to Elle Pendrick. If you've had open heart surgery before you may have heard of Elle, or you may have read her article on the HeartKids blog titled ‘Open Heart Surgery Tips and Tricks From a Pro’. Elle and I have both had open heart surgery, and today we're going to chat about some of the things that you can do to help prepare yourself for surgery, both physically and mentally. Welcome and thank you for joining us Elle, where are you joining us from?
Thank you Sam, it’s really great to be here. I’m joining from actually miserable Canberra and the Ngunnawal nation.
Yeah, lovely. A beautiful place Canberra. I went down to visit a friend who's in the army down there. Froze myself. I'm a sunny Queensland boy, and loved the warm temperature. And yeah, it was freezing down there. What does it mean to be an open heart surgery pro? How many surgeries have you actually had?
Well I wasn’t quite sure to decide whether I was a pro or not, but I hadn't met too many other people who've had five open heart surgeries. So I thought that maybe I’m a bit of a pro. And also when I went in for my fifth open heart surgery, I had like a list of what I wanted and what I didn't want and questions. And even the surgeon said to me, you don’t usually get repeat customers like this. So I thought, okay, I'm a pro at this, like I know what I'm doing. And yeah, I had my first surgery at three days old. And then six years, eight years, 21 years old, and then 33 was my last one, and I'm gloriously 39 now.
Awesome. That's so good. Yeah, when I went in for my surgery, I definitely went in blind. So I'm hoping that what we can do today is bring some education for people who went down that same sort of path.
So tell us a little bit about your heart condition?
So I don't have a really cool name like TOF or something like that. Mine is pulmonary atresia with an intact septum and a leaky mitral valve. It's a bit of a mouthful actually.
It is a bit of a mouthful but seeing as you’re a pro you rattled it off nicely. So now that we have actually verified that you are definitely a qualified pro when it comes to open heart surgery, what motivated you to write the blog about it for HeartKids?
I think by the time I got to the fifth time round I just, I realised when I went in for my fourth surgery at 21 there was just nothing available. There was you know you get the hospital information but that's you know pretty generic. And they do a really good job of that but there was nothing that really spoke to me about what to expect, what to, you know, prepare for what to do while I was in the hospital, what to pack, like nothing really, and I did what everybody does and I googled it and I couldn't really find anything that I found that helpful and practical tips. So, after my fifth surgery, I just thought no that's it. I'm gonna write it myself.
The how-to guide from personal experience, I love it. So let's get into it. Having open heart surgery is obviously a major thing. You're quite literally putting your heart in someone else's hands. How do you make sure you've got the right people for you on your medical team?
Having the right people is absolutely critical particularly for people with complex or any type of congenital heart disease. So there's been some research that people who see a specialist congenital heart cardiologist and surgeon have much better outcomes. So statistically you're better off hunting around and making sure you're seeing the right cardiologist and the right surgeon for you. I knew my surgeon was absolutely the right person for my surgery because he'd done the last one. So he specialised in people who as kids like me had already had surgeries or who were born with it, or acquired it at a young age and I think, you know, the best way to do that is to ask some questions. You know, who do you normally see and try and get to the bottom of that before we sort of commit to any type of surgery?
Yeah, for sure. You got to make sure you're comfortable with that person because that's a big part of the healing process as well, right?
Absolutely. And as you said, you literally putting your heart in their hands and you've got to make sure that you're at the right team behind. You trying to get you through a really big surgery.
I know from my experience, just how mentally and emotionally challenging open heart surgery can be. What was your experience with the psychological side of things? And what are your tips for managing this, while preparing for surgery?
Well, I think I was pretty like, I tried to be a bit light touch in what I wrote but now, talking about it, I think I freaked out. I completely freaked out and most people I talk to and try and help through that, that process, it's normal, it's okay not to be okay, thinking oh my god, I'm going in either for another surgery on my first surgery. It's a big deal and so I went and saw a psychologist. I was pretty proactive, I'd already been seeing one. Anyway, I'm really big on seeing counsellors and psychologists and helping you along the way. And my view is always, I don't have all the tools in the toolkit to be able to handle every situation and they helped me with certain tools and the person I saw, she was amazing. I actually was having flashbacks while I was driving and then having freakouts. Okay. So, you know, try this and try that. And one of the really fascinating things because I was really afraid of the scalpal and that sort of thing. And she's like, try getting a spoon and putting the back underside of it just on your skin so you can feel it and feel that you know it's okay. It's not as bad as you think and then slowly progress and quite sensitive in my existing scar areas and sort of learning that it's safe. And it's you know, it's obviously for a good reason and I think in addition to getting help myself, one of the really important things is also supporting my friends and family to get some support. Because being a carer is hard, it's really hard. Because my life stopped and I had to take time off, but my husband had to, my mum did, my whole family does, and this is, you know, not the first rodeo we've been on. So we're quite practiced at it. But I would highly recommend other people to get some help as well and there's a lot of other ways you can try. And mentally prepare. Write down everything that you kind of get nervous about. Have a good think through. I went in with the whole shopping list, you know, because they'd pulled last time… they had the intubation, the tube in my mouth, that went down into my throat, so I could breathe, but it ripped into my lip and so I wrote down, like don't tie it in so tight the next time and really practical things that I was like, no, I don't want that again. Thank you very much and you know, the nurses were amazing. I handed it over and they're like yeah, and none of that happened. They just made sure none of it happened again. They’re absolutely incredible. But it also helped my mental well-being when, you know, I woke up and I'm coming out of, you know, into out of the surgery and mentally, I'd prepared and mentally I had, you know, also worked with the team, medical team who really helped me. So what sorts of things do you do, Sam?
My situation is something that I've spoken a bit about on this podcast and in a few other podcasts that I've done. So my surgery was sort of sprung on me very quickly and it rattled my world. So I went in to my cardiologist appointment, I was overdue for checkup. I just moved to the Sunshine Coast and I'd actually broken my ankle on the weekend from falling off my skateboard. And my cardiologist said what happened to you, so I told them and he's like, that could have killed you because you need to have surgery in the next 90 days. That was the first appointment that I'd actually gone to that I didn't have my support group with me, my team behind me, like, my mum, my sister, so that was obviously a big shock. So, it ended up nearly being six months by the time I had the surgery, so I sort of suffered a bit of anxiety and depression in the past. So if I had the ability to have the foresight, you know, and hear this sort of a conversation and say, look, go out and find the support because there's the stuff that you're very likely going to go through and that would have been hugely beneficial for me because I flew in blind. And as good as the health system is, you know, there's still a few holes in it. Yeah, it was, so it was quite confronting for me. But yeah, I'm grateful that I do have a beautiful support group around me and I could lean on my friends and say, hey I'm not okay, I need some help and yeah, I had that support there.
That's fantastic that you had the support around you and it's really tough, you know? And it doesn't only impact you, it impacts them as well. And the support that's available now is amazing. Another thing including seeing someone and actually talking about it and trying to come up with physical ways to try and deal with the stress of it, I also did a lot of meditation and hypnosis and found those resources I could do at home by myself, without needing a professional with me at all times, which is not possible, but I found that helped me shift my mindset a lot. And, you know, I found some great stuff on needle phobia and things like that. Because I mean, after, you know, years and years and years of needles and this, and that and, you know, you've just been in and out of hospitals my whole life and getting to a point where you kind of like, oh, I don’t want to go in, they're gonna poke me like a bloody pin cushion again, sorry, and, you know, being able to kind of mentally prepare for that and think that through is really important as well.
Yeah, meditation now that I'm on the other side of it, like I've stepped into this new healing modality, I guess like you know that’s just across the board and yeah, meditation has come into my life and I think that my heart surgery was a huge catalyst to go down that path and it's been amazing for so many different aspects of my life in how beneficial it has been. I've had some beautiful experiences while doing it as well. So not only is it healing, but it's also incredibly powerful for all aspects of your life so I always have a huge testament for what meditation can actually do.
So there's no two ways around it, having surgery and completing the recovery is always going to be disruptive in your life, like having to take time off work or study. What are your tips for how we can manage this impact?
Well, well, I guess, yeah, as you say there's if or buts, you've got to take the leave. Like it's just, it is what it is. And I think when I was obviously in primary school, you know, I had lots of surgeries then, and had time off and, you know, friends and school friends and stuff were pretty good, but I still found it pretty difficult to keep up with school work and do those sorts of things. But then, as a young adult, when I was 21 and going in for my fourth open heart surgery and I was part-time uni, part-time working, and I had complications afterwards, and I found it really hard to find my feet. And I think one of the things is making sure that I had been really upfront with my workplace and I was really upfront with my university. So I got the relevant letters from my specialist saying, you know, I'm going into surgery, this is what, you know, X amount of time is going to be needed. And I actually do remember, going into the surgeon, and he was like, right so I think yeah we'll just let you know when it's on. And I put up an argument, I was a bit cheeky and I said, well, I'd like to go back to university semester two so if you could do it in semester one that would be great. I'm available any time before April bla bla. And he's like, oh, okay. So I managed to have it in semester one and go back for semester two. So trying to negotiate, you never know what you’re gonna get. The worst they can say is no.
Yeah, that's exactly right.
Have a bit of a plan. Like try plan it into your year if you know, unfortunate if you don't know, you don't know. But if you know that it's coming up try and negotiate some timing that might suit you and your family. Otherwise, you know, be upfront. Let your university know, let your school know. And to be quite honest, I've never had any issues, they understand, especially if you have a letter saying you’re having open heart surgery, and then also with the workplace, that's really important to do that. When I had my surgery at 33 I was in a really high-paced busy area that I just, I wasn't feeling great anyway, and I ended up stepping down from that role and decided to go back to a more a slower pace role that when I took long period of time off, and then a phased return to work, they were actually really comfortable with that. We worked well in the environment that I was on, and I was fortunate to have that opportunity. The one thing that I will always say to people is don't ever think that taking time off to look after your health will impact your career because it hasn't been the case for me ever and I have certainly freaked out about that. My career is something that's really important to me. And I've managed to, you know, keep moving along while taking big chunks of time out to make sure that you know, I can have the surgeries I can have the rest and recuperation time that I really need so that I can then go into being my best for however long period I've got before I need the next surgery or the next whatever comes up with my health and I've been very fortunate that, you know, all the workplaces haven't seen that as a detriment it's just part and parcel of being an adult with congenital heart disease.
Sometimes we need to take a step back so we could take a step forward, right? And you're gonna have a lot of downtime when you coming on post surgery. So it could be a time to, you know, upskill yourself a little bit as well. And that could give you something to fill in a bit of boredom, which definitely gets us all. When I had my surgery, as I said I rolled into my cardiologist appointment with a broken ankle, I broke it in three places. And you know, I just recently moved to the Sunshine Coast so then my ankle surgeries took up most of my sick pay in holiday pay and everything like that and then this heart surgery was sprung on me. I basically had to take the three months off pretty well unpaid, but you know, that's just the breaks that you get and it was an experience, but we got through and it was, you know, got done healing and that's all I was concerned about. So I wasn't concerned about work or anything like that and it was a beautiful experience at the end of the day. So what else can we do for surgery to prepare ourselves for when we're able to come home from surgery?
Well, there's actually loads of things that you can do, which I never really realised as a kid. But then as I got older and then decided to write this blog, there's loads of things you can do, you know, have a think through, you know, all these household chores that you really not going to be able to do because you can't use a vacuum cleaner. You can't, you know, wipe down things vigorously to start with, you know, you really got to, you know, pace yourself and having people that you can delegate some of those household chores, whether it's, you know, family and friends. And to be honest, if you're having open heart surgery, you probably don't have a shortage of amazing people around you that are willing to help even if it's just with the cleaning. So lean into them. You know, a lot of people are really independent, I understand that but just for a couple of months of your life just lean into it and you know, at some stage you'll be able to do some of those household chores a bit of exercise and part of your recuperation and physio anyway, but at the start, you know, clear it off your plate early, organise someone to come and help you with it, have a think about if you need a wheelchair to sort of get around the first little bit, you don't need to. But, you know, sometimes it's a good option, if you sort of think, oh, I might want to go have a look at art in Canberra, You know, I can be wheeled around there and still get out and have a look but not be able to cover as much ground if I was trying to walk it to start with but then have something that I can still get out in. Have a think about some extra pillows and you know a chair that will sort of fold out so you can get your legs up and sort of lay down a bit for all the awesome TV watching that you're going to be doing. Well while you're recovering, that's really important as well. You can also practice some of the things that you're going to need to do post surgery. So post surgery you'll have a broken sternum and you can't really push your hands down to get up from the dining table or anything like that. You’ve really got to use your legs and your ab muscles. So crossing your arms over your chest and then trying to get up by yourself is a really good practice to do because you're going to need to do it, actually quite a lot and practicing that beforehand I found really hard because I was already pretty stuffed and essentially doing what’s sort of a bit of a half a squat to get up from any time was a bit challenging but in the end, it was really, really worthwhile. And the last thing along with getting people to help with your household is also getting your food prepared because, you know, whipping out and going I just forgot something, I will just duck to the shops isn't really an option for a little while. So, you know, either preparing food, or having a think of getting some deliveries, I think we're all pretty used to that after COVID of getting food delivered to your house. And there's also some really great Deliveroo, Uber Eats, all sorts of things. So, have a bit of a plan of when you get home and. So for me, I had my surgery in Sydney and so then had to get back to Canberra. So, once you get home, you just kind of like, well, I can't cook anything and my pool husband's stuffed and he's just been, you know, stressing out. Trying to look after me and get all my medication, get me in the car, get me home and then to also think, oh God, now I have to cook and do everything. So we kind of prepared as much as we could. Had some frozen dinners, you just pull out and stick in the oven or something made a huge difference and relieved. Our stress once we got home as well.
Stress management, I think is a huge part of our healing journey but then also, you know, our support group healing journey, and it's a massive thing that gets unspoken, but for me, God bless me mum, she came around and stuck it out with me for a bit and I ended up kicking her out of home. Because I'm pretty sure I was sick of her and she was sick of me. You know, she's an amazing cook, that’s where I've learnt a lot of my cooking skills from mum. So got a bit spoilt there. I got pretty good at playing Xbox as well. So it was nice to come back from, but like for my recovery, like I was up on the second story and we had a nice balcony and I got a nice outdoor lounge there. So I didn't have to traverse up and down the stairs or anything like that and I still got to go out and see some sun. It was a beautiful moment to be able to sit out there in bask in the Sunshine Coast sunlight.
Yeah, that would have been amazing.
So what do you like to prepare to keep you as comfortable as possible while you're going to be in hospital recovering?
Yeah, I think I really was prepared. I had all sorts of things, I had prepared some of the hypnosis and other things and some playlists with music and things like that. And when I was in ICU, straight out, people are noisy. You know, people come out of surgery, people react in different ways. And you don't always want to hear it. And also there's the bings and, you know, your machines are going off and they're coming and they're checking everything. And, you know, sometimes you just need to escape a little bit. And so, they were very kind and I had downloaded everything to my phone so I didn't have my phone on any cellular level. It was only on aeroplane mode. So it wasn't going to interfere with any of the machines in ICU and then I just had headphones and would crank it right up. Really loud and I got this really great one and it was a walk in a forest and it was just pure escapism that you know I could be lying in the bed not able to move feeling really rotten but I was in a forest feeling the nice tree leaves and it made a huge difference for me. Also, I found some healing ones to start healing post surgery. I downloaded movies, I had TV shows, podcasts, magazines, I found it hard to read straight after. So anything that was just audio or visual without having to read was much easier for me. And that other thing was sort of wheat packs and hot water bottles because I don’t know about you Sam, but my, you know, my bones and my muscles were just all sore. And, you know, they give you great medication these days but still having a bit of a heat pack or something, to kind of dull, the aches, really helped me as well.
Yeah music's a huge part of my life and that's what got me through and journalling. I love journalling. I love writing, so that was awesome for me to be able to decompress my brain. You know, it was, you know, you're getting a lot of opportunity to do that while you're in there. So it was cool to be able to sit there and write about sort of the experience a little bit. But yeah, the music was a big one for me. So I got a mechanical valve in my chest and it ticks. So it's like a clock. And I was sitting there and it dawned on me when I was like, oh my gosh, I'll put some music in my ears, and it'll drown it out and then put the headphones on because the sounds coming from internal rather than an external, I could still hear the tick. So I try to picture it as a bit of a metronome to keep up with the music. And that's just my psychological way of getting around the frustration of having that mechanical valve.
Yeah I never thought of that.
Yeah no, neither did I was like oh my gosh this is gonna be great. This will be perfect solution but yeah, it didn't work out quite that way. So let's talk about some of the stuff you've written about that might be more relevant to women and I'll even throw in a couple of things for blokes. But yeah, what is some of your other tips to get prepared, particularly for women?
Yeah, for the ladies actually, there is some really special things that you really need to think through, first of all, and blokes wear nail polish too, and have jewellery. So, they need to be able to see your fingernails to see what colour they are. So, you know, they'll come and check and see if they think they are blue.Or they, you know, whatever colour they are. So getting rid of nail polish is really critical part of actually monitoring your wellbeing while you're in the hospital and also removal your jewellery. And I wouldn't recommend taking it to the hospital. I personally never had anything nicked and I haven't heard of anyone. You haven’t had anything nicked from the hospital have you Sam? No you haven't that's good. I would just would never take anything that's really valuable, although it's nice to have those mementoes, you have to take them all off and put them somewhere when you're going for the surgery anyway. And when I came out putting a necklace on that might rub against or touch this scar, just completely freaked me out anyway. So I left all of that at home. And I think post surgery bras are a thing. I didn't know they existed when I had my third surgery in 2016, or I would have absolutely invested in some, but because you've got a broken sternum and a scar that goes right between your boobs. Just, it's hard to find something that sits. Well, and I found underwire brides really hard. So what I did from my previous experience, when I was 21 and I knew it would be an issue. I went and bought some sizes or two larger sports bras with a really thick band, but if you can get a post surgery bra, that would be even better. But basically just something that's not going to rub on your scar or something. That's just going to be really comfortable if you need to wear one and something you can get on and off. So I couldn't get it on and I couldn't get it off. My poor husband for like weeks was helping me and I couldn't wear it for very long to start with either. So, have a think about what you're going to do with that. And in terms of periods, that's something definitely to watch as a woman. So I had what's called an Implanon Rod which was working really for m, it was really great and what happened post surgery was my periods went absolutely haywire and I ended up anaemic with all sorts of issues. So we had to change my contraception for one and two then we had to treat the anaemia So and I kind of had gone to the doctors and said, I don't understand what does open heart surgery have to do with their like, we don't know, but there's obviously a connection here but you know, the massive surgery in the system has just rocked everything and it had just gone completely haywire. So keep an eye on it. Also prepare for the possibility of immediately post surgery periods. I haven’t experienced that but I do know some women and, oh my god, my heart goes out to you. I can't imagine coming out of open heart surgery and, you know, not being able to move around very easily and then getting your period. So honestly, my heart goes out to you just be prepared. Another option for that might be period, undies. So you're not, you know, you can obviously still go to the bathroom when you need to, but that's a good option. These days there are some really decent ones out there. And this one Sam, you might be able to dive in on. So, when I was a kid, I don't remember everything they did to me when I woke up, I just don't. But when I was 21, I went in for the surgery and I came out and then, at some stage, I was like, oh, I need to do a widdle and then they're like, no, it's fine. And I was like, no, no, I really need to go and they're like, no, no, it's fine. You've got a tube, and I'm like, I'm sorry what? I didn't know that they were going to go down there at all and then my second thought was, oh god, I would have cleaned up. If I had known I would have presented a little bit nicely and yeah, I just had no idea. So then, for the next time I was like, right, I'm prepared with this maintenance is gonna look good because I know you're gonna be about down there and that it's not just, you know, the upper half of your body. They are gonna get down there so that when you get out of your surgery you can't really get up and go the loo, so you can stay in the bed and do that. I understand it's a slightly different experience for the blokes there Sam?
Yeah, it was a shock to me as well because I didn't realise that it was gonna be happening. And I'm pretty sure I can tell people, like, the most traumatic part of my surgery was getting the catheter removed. It was very confronting I guess. But yeah, similar sort of thing. Like, you know, I didn't realise that it was actually gonna be a thing. And then I had a nurse come in, and she's just like, all right, someone's gonna come in and shave you down. That's just like, what do you mean? And so like, you know, we might need to go through one of the veins, in your leg and all that kind of stuff. So, I had the frilly paper undies on and you're feeling very vulnerable as it is, and I have this bloke, actually come in to shave me down. And it was a very confronting experience, but, yeah, yeah, it's something that people should definitely be aware of because, you know, if I had of been, you know, at least been able to somewhat mentally prepared before this bloke came into shave my bits down that um, yeah it was. Yeah, would have been a bit more, a nicer transition, I guess into it, but the end of the day, I'm literally about to be wheeled into having surgery. So, that's probably the least of my worries. And I just felt sorry for the nurses having to put it in. Yeah. Sorry.
I get it, I highly get it and like, for me both times there's an adult, they never mentioned they were doing it. So it was only because they did it the first time that I was prepared for the second time, but yeah, if you've got a bit of notice just prepare. Are there any other special bloke things to be aware of?
Definitely not post surgery bras, not for me, at least. But like, you know, when you mention that I'm just like, oh my gosh, it actually makes a lot of sense. So like, you know, obviously your chest becomes very sensitive because you literally been cracked open through the centre of your chest. But for blokes, the biggest one for me is just the mental health is for blokes to be prepared for it. Because, you know, because we're trained by society for, you know, for whatever reason, that we need to mask all of our issues and problems. And now we get to say it's okay to not be okay. So just reach out is a big one. Another things that took my pride for a bit of a hit as well. When I was in the ICU, you get the morphine clicker, which is great. But when you fall actually managed to fall asleep you're not pressing the button. So then you know you wake up in a world of hurt and I actually asked the nurse. I'm like, is there anything else that we could do something that give me a bit prolonged and gave me a depository which again you know as you sort of like in hospital and it's a very very vulnerable position to be in but I can hand on heart guarantee that it works bloody wonders because I think it works for about 12 hours or something like that. So you are bucket loads more comfortable and I was a little bit apprehensive asking it for it for the second time but you know, it's just part of the process and you just got to suck in that pride a little bit.
Absolutely, I understand that one.
So can you tell us or talk us through what it's like waking up after surgery? I know firsthand those first few days can be particularly difficult. How did you get through them on your last surgery?
Yeah, I think the thing to know, for me, the first few days are always the worst. And I remember waking up thinking like just, you know, trying to focus on my breathing, focus on a few things and not get overwhelmed and freak out because I had a tube down my throat. At least this time like I knew where I was, which was better than when I was 21. I found that really, really hard when I was 21, I kept coming in and out of it, and actually, my family kept coming in and out, and they were allowed to come in and I got really disorientated because I closed my eyes and then I'd open them and one family member would be there and I thought it was the same period of time, but obviously I close my eyes and then no one would be there, then someone else. And I just got really confused and overwhelmed and I finally, they took the tube out and I like, waved my hand to my mum to, like, come closer and come closer, I just found it so hard with them there. And she finally lent in and I said, and she said, what is it darling? What do you want? And I said, piss off. I told them all to sod off because I found it so overwhelming and I didn’t know what to do and you can’t talk really. And then when I was 33 and I went in, I made signs. So, I had sign language. And so I did write ‘sod off’ on one of them. And then I had a hold hands sign. And I had different signs, so, and I don't remember using them, but they said that they did use them. And I think the most popular one they said, was hold hands, which was nice and I didn't tell them to sod off this time. Which was really good. But yeah, an interesting experience and I also remember thinking, you know, having some perspective and thinking when it was really awful and I was in pain, it wasn't great. And in the last I remember thinking, oh god, it could be worse. Come on. You know, you're trying to give myself a pep talk. I'm like no no. This is as bad as it gets. This is the worst. That kind of reassured me that I was trying to think, oh, it could be worse. I'm like, no, no, you can't get any worse. Like this is the worst and then actually made me feel a bit better because I was like, you know, I'm kind of coping. This is okay and thinking about you know, that sort of thing and trying not to get too overwhelmed and disorientated and thinking through some of the things I'd practised and rehearsed about focus on your breathing, you know, I know where I am. I know what's going on and trying to hold on to those little things that made a huge difference. And also pain management. As you said, with the click button, like you just don't suffer in silence, honestly. Just if you're in pain, say something. Because I remember thinking, oh my god, it’s not good. This is really not good. And actually, as a kid, they gave me a bath after one of my surgeries, and they laid the bed down and cut off the morphine straightaway. And then I don't remember this. But they came up and afterwards and they said how you feeling and I said oh a bit sore I’m not feeling that great. And then the nurse apparently said to my mum, well, she's weaned off the morphine. That's good. Let's crack on then. So just don't suffer in silence and if you are a little bit sore, yeah, say something. Don’t sit there and feel awful. I think also family visits are really important. Sort of when you wake up in ICU. It's so, I know in the hospitals I was in they were very strict with their times and family, for one of the best things, or friends coming to visit, please be on time. Please to be on time. Because honestly, I was laying there. And the one thing that I could see was the clock, the whole time is, what I could see was the clock. And I think there's no family from six or eight PM until 10 AM the next morning. That is a long night by yourself trying to listen to, you know, your meditation, trying to self-manage, trying to cope, trying to, you know, not get caught up in the demons of the pain and everything else. It's a really long time, 12 hours, you know more than 12 hours by yourself in that environment, and the nurses are incredible, but honestly as soon as 10 AM came, I could see like 9:55, 9:57 and as soon as 10:00 a.m. went and the doorbell went for the whole floor, I knew it was my family, and they came straight in, and I was like OMG I’m so glad you’re here and it just made a huge difference, having them come and be on time, because I had literally been counting down the seconds till I could see them. So what was your experience Sam?
Yeah. So pain management. Definitely. That's a huge one. The nurses and doctors don't want you to be in any pain, you know. So please. Yeah, reiterate that point is do not, you know, especially us blokes, you know, we get a bravado on about it sometimes and, you know, we'd like to think that we can handle it. But yeah, definitely just sing out, because it's gonna make your recovery better. You know, we mentioned stress before, and having pain is, your body, is putting it into stress, and that's gonna hinder your recovery as well. So, just make sure that you open up and there's no need to have an ego in there. It's okay to say hey bloody hell this is hurting. So family visits. My friends and family, that was huge part for me that I was most terrified about was the night before when I was in hospital before the surgery. I was terrified of what that night before was going to be like. So I made sure I have, you know, my best mates there and you know my family as well, as late as they could. But then yeah actually ended up like a sort of I guess I was at peace with what was to follow suit the next day. Yeah, you definitely want those distractions and friends coming in to visit my sister snuck me in some McDonald's as well. So it was a nice nice break from the hospital food. She was driving from Toowoomba to Brisbane and she's like, you want me to pick up anything? I'm just like, some McDonald's would be great just mixing it up. Yeah, that was huge part of mine. Just family and support.
Yeah, I think the night before I, yeah freaked out as well, but because I came from Canberra to Sydney and usually you go in a couple weeks before and they do the obs and the pre-testing and, you know, your physio test and everything, but because I was coming up from Canberra, I didn't do any of that. And so the day I got there, they like, rammed through this battery of tests and everything. So I didn't really have much time to think, cause you’re kind of being whisked from one thing to the next to the next to the next to try and get all these pre-surgery things done that you normally get done if you live near one of those larger, surgical centres and then yeah, my family were there the whole time but because I had my list, it was like I’m really scared about this and then this. I don’t remember a thing honestly, I don't know what they gave me but I don’t remember a thing when I was 33. I don’t remember going to bed, I don't remember getting up, they're like you know you have to have showers. I don’t remember the shower, I don't remember any of it and I was like I don’t know whether that's a good thing or a bad thing. I still mentally struggle with that but yeah. When I was a kid I just honestly didn't know any different. So you’re just like, oh yeah, okay, see yas. You know, like you just don’t know what you’re in for, then when I was 21, I think I definitely, it was a long night, but they, you know, they were very lovely, gave me something to help me sleep and everything and I just, yeah, I think I just, I don't know. For me, I never thought surgery was something that I wouldn't come out of. I don't know why but I think it's also because by the time I got to 21, I'd already survived three so I was like, yeah, just go in like a grease and an oil change and they fix a few things. Then it takes you a few months and then you're better than you were before, this is what you do.
ICU was an interesting experience. I had obviously gone through a massive surgery and you wake up in ICU and like I said, you've got a tube down your throat and the needles hanging out of my neck was you know, one that was a bit of a shock to me. But my brother, he was one of the first people in the room after the surgery and it nearly broke him. Yeah, he sort of saw me everything hanging out and, like, I’m the baby brother, so it sort of broke him, but then when he sort of come back in and I was a little bit more to it, I actually, similar sort of thing to you, I was like, oi mate, and I flipped him off and I said, I could still beat you up. It was a beautiful moment for him and he's a lot bigger and burlier than I am too. But, yeah, it was a beautiful moment for him because it was sort of at that point, that he knew that I was going to be okay as well. So it was, yeah, it's lovely. But it didn't take me long, once the tube was out of my throat, to try and get some tucker in me belly. You know, the nurses and doctors were quite amazed with that because I was just, I love my food so I just needed to get something in me and that was just a nice sensory sort of thing, as painful as it is after being cracked open and going through that, you know, nice to get some sort of real food in your belly again and it was beautiful.
Yeah, some sense of normalcy really helps?
Yeah, for sure. So coming home after surgery is a huge milestone that we all look forward to, but it doesn't mean our recovery is over. What are your tips and tricks that helped you continue on your recovery when you got home?
I think that being prepared and the things I talked about before with, you know, having your helpers and having, you know, people to help with your cleaning and having some food prepared. One massive thing for me on the last surgery was rehab, and you know to go through five open heart surgeries and only on the fifth one to have rehab was astounding to me because it made a huge difference to my recovery. So in the hospital before I went in for my surgery I did a walking test and a few other physio tests and then I would have someone come by almost every day and she was amazing. She, you know, put up with the I don’t want to do it today and you know, that kind of thing. She was really motivational. She was fantastic. And then once I left Sydney, and got to Canberra I was like well what do we do now? But then I got to do a six-week course in rehab at Canberra Hospital, which was fantastic. The only thing I struggled with is one I was the youngest, two mine was congenital and three, I found it some of the crowd, a bit difficult to be around and I was oh, I was one of the only ones who had a full open heart surgery. Most others had had, for example, a stent or something, put in through a catheter. So, you know, out of a room full of people, you know, there was lots of fascination and people were like oh hey what are you here for which is great, and I got to make some lovely friends and things like that, but it was confronting sort of being the youngest with the most severe surgery there and trying to sort of work through things, but the nursing staff were incredible. They also had sessions on nutrition and various other things which was really important for a lot of the people there. And they sort of wouldn't let you go into sort of heart rate gone into a good space. It was really, really reassuring to do exercise and build up my stamina again in a really safe environment because I think when I was 21, I remember it was, you know, they send you home with this list and they're like the first, you know, week you walk to letterbox and back, second week, you walk to this and like it was very rudimentary and it was all self-reliant. Whereas, you know, when you book in for two times a rehab a week, you’re really accountable for it and I can't speak highly enough about rehab. And from there, I went on to do clinical pilates, which I love and I have a love-hate relationship with exercise. Sometimes it takes too much energy from me. Sometimes it helps build it up and I struggle still to this day to get the balance right. But having rehab after the surgery showed me what I was actually capable of and I found it really fantastic to be able to do. Did you get rehab after yours?
So, I'd had rehab obviously at the hospital. It's, it's part of it, you know, they want you standing up 24 hours generally after you have your surgery, and I was sort of in a similar boat to you, like, you know, the age thing, I was the youngest person on the ward, by a considerable margin, but I'm also a stubborn as an old ox. So I was very adamant about getting out as soon as possible from the surgery and for me, you know, the milestones that you need to do is be able to walk upstairs, you know, be able to do these particular things. So I just push through any sort of pain and difficulty but that's just yeah my mind and how it works and then I lived in a complex. So, you know, I was walking around the complex and doing a bit of stuff. I've sort of shared this story in the HeartKids video that was released. I was released six days after surgery. And then on the seventh day, I actually got my mum to take me down to the beach. And, you know, being able to walk down to the beach, put my feet in the water, feel the waves on my legs, that was instrumental in my recovery because it was then that I really knew that I was going to be okay. Like, you know, it's just you could feel like all the negative energies sort of being zapped from your body, even now it gives me goosebumps when I think about it. So yeah, physio is hugely important and there's some wonderful physios out there and we've got a lot of support, so it doesn't even necessarily cost you anything, or next to nothing.
Yeah, it didn't cost me anything. That's amazing.
It's something that I didn't realise. So I got blessed by a unbelievable physio up here and he actually specialised in cardio sort of recovery which was just by chance. And he was talking to me back like when you get cracked open, you know, it's releasing all of the pressure in your chest and all the muscles that are all connected. So you can actually have issues from the base of your skull down to your groin because everything's just so intertwined that, yeah, you can have all sorts of problems. So, you know, if you're getting pain in your groin, don't think that it's your groin, that, you know, it could have been something from your chest. So something for people to keep in mind.
Absolutely. If you can find a physio especially one that's got cardiac experience, grab onto them with both hands. They're worth their weight in gold, they're amazing. I think something else that really helped me was visitors, and because I had to go to Sydney and then, you know, coming home, I find coming home quite nerve-wracking. And I honestly don't know how my parents did it as a kid because I think as a child, you know, you’re released after a couple of days after open heart surgery, and then I lived in Wagga Wagga and there wasn’t the nice highway, you know, it would take them eight hours plus to get home. And then they're in this regional centre with this kid who's just had major surgery and, you know, charged with here you go keep her alive, knock yourselves out. Like, that’s so confronting, like, at least, you know, Canberra’s got great hospitals and Wagga does too now. But, you know, getting in the car and like we were prepared this time and I was still, you know, I had tracky pants and stuff on. And, I remember, we got lots of pillows so I had a pillow between the seatbelt and me, because just the pressure of the seatbelt freaked me out, but that seemed to work perfectly. And I had, you know, other pillows around me, it was very comfortable in there. And you know, you've got to stop on the way home and yeah. Going into Macca's. And I must have just looked an absolute treat. I couldn't get into the toilets because you have to pull the door open and I couldn't get into the toilets because the door was too heavy, and this nice lady came up and she opened with the door, and she just gave me the weirdest look. And I was like, oh god how do I explain this to people? And I was like fine I’m just gonna cop it like whatever, I pushed my way into the toilet, and push my way out to get back out but you know a little things like that. Try and if you don't live close to where you're having your surgery, try have a think of that, and then yeah, visitors in moderation I would say and you know, where I've been really blessed as well with great friends and family who wanna come and say hi and you know, wish you well in your recovery and like I get really excited when they come and then I use all of my energy and then completely crash and whoever, you know, my husband and my mum and whoever's there at the house, who has to, you know, look after me, has to like pick up the pieces after my wonderful friends, come and visit. So I try now and do it in moderation, so that I don't fade out as much afterwards and that there's not as much recovery. So, sort of I kept it to maximum of an hour, but really half an hour for the first little bit and then build up sort of time and, you know, or I mean these days it’s pretty easy, you can do FaceTime, you can do all sorts of things to still see people and stay connected, which is great, but yeah having regular chats about, you know, boring stuff. Like what's the new movie that's come out and what are you doing? And some of my friends you know, they know I'm housebound essentially or like not very mobile for a couple of weeks and they didn't want to tell me much about, you know. Oh we went here and went to the beach and we did this we did that and you know for us to go to the beach out of Canberra takes a couple of hours, so it's a bit different but I kind of got to the point where I was just like can we just talk about this stuff? Because you know, I love hearing about what you're doing out in the world and it's only going to be a couple of months. It's not, or a couple weeks to start with, before I can start doing, go the movies and a few other things as well. So you know, please tell me what you're doing. Don't hold back, you know, let me know what's going on and having a bit of a laugh and obviously you know, I love having people around and so making sure I did a bit of prep before the surgery so I could cater for my guests when they came which sounds really stupid. But it's an important thing because I want them to be happy and comfortable, when they come visit me, because they're coming to visit, I understand, you know, it’s time out of their busy day and, you know, everyone’s got stuff on and yeah, I found yeah, prepping a little bit of snacks and things for them good too.
I love snacking so I can use them as an excuse and I'll just get to eat it all anyway, so it works.
Exactly. But yeah, do try, when you get home rest and recuperate and you know, make sure you've got all your medicine, try book in and see your regular GP and keep in touch with them if you need any additional medication afterwards, and I think last time we got home, we realised that we hadn't been discharged with one of the key pain medications, which was terrible. So we finally got home and I’m like this is really, I don't feel great. And then yeah, we realised that we were missing it and to get in and get it sorted with a bit of a debacle but we managed to get there, but make sure you've already medication when you leave your hospital.
Yes. Especially pain medications as it’s going to be required. So you did a lot of work on your mental health and built coping strategies before your surgery. How did your mental health journey progress through your recovery and do you have any tips for other people about managing the mental side of things during recovery?
I think the biggest thing right from when you wake up from the surgery and onwards is to celebrate the wins. You know, you're going to get the tube taken out, celebrate it. That's a win. I hate to say, but your first poo is a big deal, celebrate that, you know, your first standing up after 24 hours, that's a big deal. Celebrate that, you know, don't lose sight of those little things because they really add up to actually quite a lot. You know, being able to go to the physio appointments at the hospital is a big deal as well. Being able to drive at some point is really important as well, and make sure you talk to your specialist and everyone about when it's safe for you to be able to drive. But when that day comes, that's another, you know, thing to celebrate, and try and keep those things in perspective. And for me, I felt unwell each time before I went in for the surgery and one of the biggest mental things for me is to know that, you know, this fixed it. You know, and I've had complications afterwards, and that was really rough. I had, when I was 21, I had blood clots in my heart and a few other things, and that was not fun to try and sort out and kind of delayed my recovery for about a year. But at the same time, I still felt a little bit better than I had prior to the surgery, so knowing that you know, they're not gonna crack you open and do this major surgery for nothing. It's to make you feel better and to you know, extend your quality of life and I spend some time really thinking about, okay, so once I get to six months what am I going to do that that I couldn't do before, and trying to keep that in perspective. So we went to New York and Hawaii and in Hawaii, we like climbed some beautiful hills and it was amazing and you know New York is massive get around and I could get around and still pretty stuffed at the end of the day because it's so huge. But, you know, got to walk around some of the most incredible museums in the world and see different things, and trying to keep all of that in perspective and think about what I get from, to be honest, out of, you know, a whole life. You know, life expectancy is 80 to 100, let's just says, being optimistic, you know, having a couple of months of downtime to do some fine tuning and a grease and oil change is what I call it, so that you can go and really live your life, is doing that. I think the one thing in retrospect is to keep in mind that yeah you get a new lease in life but you still need to do the boring things. So you know, I would always focus on the things like Hawaii and I get to do this. But it’s also like all right, and now I can do the cleaning, I can do the boring things, well I think they’re very boring in life, and you know, being able to do those things and take pride in you know, your house, and you know yourself again, was really special and to also say thanks very much to my amazing support network because I couldn't have done it without them. And I know that they sacrificed a lot for me to be where I am today and, you know, mentally keeping that in mind and being able to, when I'm, you know, well enough to go back and say, thanks so much. You know, I can do this now because of you and you know, you really made a huge difference in my life. So yeah, still, thank you to all my friends and family, they're amazing.
Yeah, I don't think they get enough credit, you know, it's huge. You know, that they take on just as much as we do off, obviously, not physically, but mentally, you know, it's a lot. I have a very distinct image that's in sort of caught up in my brain of when I was getting wheeled into hospital in the bed and just about to go through the last doors, you know, that my parents, like, mum and, you know, I just remember her looking down at me and, you know, and I could just see the look of fear, I guess in her eyes, you know, I'm the baby, I'm the favourite, obviously. So, you know, it's, you know, your baby's going in to have open heart surgery so it's a lot for us to make sure that they're okay as well. So yeah, it's huge. And don't think if you're going through it, don't think that you're alone either, there is a huge support. That's a massive thing that we're trying to, I guess, promote through this podcast. And it's a beautiful message that's just naturally coming through as well, is to say you have support. There are people out there that have gone through what you've gone through, reach out, you know, go to HeartKids, find the resources that are available to make sure that you're doing okay, because your mental battle is one of the biggest battles that you're gonna go through. The physical stuff, your body does most of the work for you, you've just got a grit your teeth and get through it, but the mental stuff is the stuff that really hits you and yeah, it's hard.
Yeah, absolutely. And I think one of the things I learnt over the last couple of years, is the HeartKids community and how amazing it is and, you know, I'd sort of especially at 21 really like kind of felt like I went it alone and I had amazing family and friends but getting to meet people like you Sam and others who have experienced that and talking to people and trying to, you know, it's sounds terrible but it's great to get a pep talk from friends and family to try and get you through it, but a pep talk from someone who has been through it, survived it, and is thriving or even if they're still struggling a little bit, you know, but they've got some tips about I did this and this helped me or, you know, just some options and just knowing that they're out there and you can reach out anytime is a huge mental uplift definitely, and HeartKids has been a huge part of my life now and I think it's really special what they can do and talking about parents and sort of seeing the look in their faces is just, I never understood fully and I never will. Until I started meeting some HeartKids parents, and you know, seeing what they go through and you know they're my age. I'm 39 and seeing what they through and, you know, the Herculean things that they do for their kids is just incredible. You know, it put strains on, you know, my dad had a small business and my mum, you know, worked part-time and the strain on them is incredible. And what they give up in sacrifice and do for us, is absolutely amazing. So massive, shout out to all the HeartKids families and definitely the siblings as well. I mean, they miss school to come see you at hospital when your kids as well and, you know, take time off work to come and help you and do all sorts of amazing things. So yeah, the families are incredible, but the HeartKids family is also really very, very special.
Yeah, I love it. Like I've done a few different things for HeartKids over the years, like, you know, education days and different I guess things where I get to talk and meet different family members and it's beautiful being able to go out to the hospital wards and see the kids and, you know, get to relate. I'm like look I've got a zip. Yeah, and then they say this big bearded bloke, walking around with, you know, but it's cool to have the interactions with parent. It's like, yeah, especially the ones who these children are about to go through heart surgery, like, you know, it's this huge weight on them to say, oh my gosh, they're about to go through it. And then, when you see someone like me who's coming in with, you know, character as big as life, you know, and it's still really positive even through all the negative that you went through, still positive and it's beautiful. You can see them light up and, you know, and just become a little bit lighter in their body and how they hold themselves, because, yeah, it's going to be okay. So yeah, beautiful. What was your return to work like?
Bumpy. It was a bit bumpy to be quite honest. When I was 21, I had the complications that I mentioned with the clots, which made it really difficult. So I just had to sort of muddle through as best I could. And the next when I was 33, I kind of knew a bit better. And so I don't know about you, but I tend to overdo it. I’m like yeah I’ve got all this energy I can use it all and learning that just because I energy doesn’t mean I can use it all, is really hard. So last time I started part-time three days a week, so half days. So I did like Monday, Wednesday and Friday and on the intermittent days I was supposed to be resting but I was like oh, it's fine, so I'd organise all these coffee dates, which didn't help with the recovery. So and I had had two months of work and it took me a month of phased return to work, where I was part-time and slowly built up my hours. And I was in a really good, really lovely place where the people were really supportive and really great. But I ran out of leave. And it took me a month or two to try and get it sorted because the workplace I had did have a special provision if you have extenuating circumstances, you can apply for extra leave and I was like, well pretty sure this counts. And so I put in, but it took a while to process through the bureaucracy of the area I was in, and I eventually got it and it all worked out, fine. And then over time I was really fortunate that I got to return to the really busy job that I absolutely loved and got to, you know, travel the world and do some really incredible things and I was really fortunate that they took me back and when I started back you know they were like okay so the first month here which is like three or four months post surgery, they're like you can work nine to five and it was not a 9-5 job, and they were really lovely. So by five o'clock they’d all be coming around, and saying it’s 5, go on, get out. Go, go, go, and they were amazing and I, you know, built up the rest of my stamina and was able to make a contribution and I think you know all heart kids really, we just want to make a contribution, you want to you know feel like you're making you know a contribution to society through whatever you're doing. But I was just really pleased that although it was bumpy it hasn't hindered my career, it hasn't stopped me from doing some really incredible things and keeping it in perspective of, okay, well, it's bumpy it's gonna be bumpy and then when we can, we can, you know, get back into doing the really highflying kind of things that you really need to take the time to recover properly and I guess the other thing is now going forward because I know that there's no cure for CHD and you know the surgery for me is I say, grease and oil change and at some stage the valve or whatever's in there is going to sort of crust over or something's gonna happen and I'm gonna need it replaced, which hopefully they can do through catheter next time, but I'll probably need some time off again at some stage. So now, I'm really careful about who my employer is and I actively look at, what's your leave policy? Do you have additional provisions for extenuating circumstances? Do you have this and that, and I really go to some effort in picking workplaces now that I know that can support that sort of thing and I'm also upfront. I'm really upfront. I'm saying, you know, I have this and at the moment, I'm going really great. So yeah, let's crack on and make some really great things happen while we can,
That's right. And I think we can get caught up in you know keeping up with the Joneses and the rat race. And, you know, we are supposed to be here, there or whatever it is, but you're going through something that nobody else, really probably gone through within that workplace, but what that gives you is perspective and then you can use that within your career and you really use that to find your purpose. And yeah, that's a powerful tool, from my standpoint anyway. That's what I had, it was great. So finally after weeks of preparation and planning the hospital stay, and months long recovery, we do finally get through it, and things start returning to normal. Reflecting on your last surgery experience, what feelings come up for you when you look back at it?
I think. Gratitude, really, you know, they say, just so grateful for, you know, a really awesome surgeon. A really great medical team, the advances in medicine. I'm so grateful for that, that we have physio now and it's free is incredible in itself. And as we go forward I might not need to have another open heart surgery. We might just be able to do it through a catheter or something else I'm yeah. Really grateful for friends and family and you know, positive workplaces. And also, I guess I'm really grateful for what I've learnt over the time about mental health. As we've discussed a lot and how to try and manage that and the importance of trying to keep on top of it because I don't, you know, I still stumble and don't keep on top of it and things like that, but putting the time and effort into acknowledging that mental health is a really big part of it and working through a lot of those things was really important and critical for me and I'm really grateful that I found some amazing counsellors as I've gone on. Post surgery, even you know, years later, I still had some flashback, issues that you know I have nightmares and all sorts of unpleasant stuff which if you don't know any better, then you kind of just think it's normal which sounds very odd when you say it out loud that you think having, you know, flashback nightmares isn’t abnormal. But if you don't know any different, you just think that's what happens to everyone and finding someone great to really work through a lot of that and try and address it so I can really move forward and not have any of that really. And also just there were no hiccups to be honest because I've had complications post surgery and I honestly think my mindset for the last surgery and all the preparation and sort of knowing what I was getting myself into made a huge difference for my last surgery. Whereas when I was 21, I had no clue what was going on and, you know, everything's a surprise and confronting and you know, you wake up and you've got a catheter and your tube down your throat. You can't talk. Like, if I had a, I just didn't remember any of it from when I was a kid and knowing a bit more, preparing mentally just really grateful that I did those things and invested in it and also trying to support friends and family to seek the mental health support that they also need is really important.
Yeah, I think gratitude is a beautiful lesson across the board in life. I think it's something that we can all take in regardless, even if you don't have open heart surgery, We are blessed within this life, even through all the hurdles and stumbles that we might have to deal with. So I think that about wraps it up. I think I’ve chewed your ear off enough now. So thank you very much for coming on to the podcast. Thank you for the work that you've done with HeartKids as well. And for being such an inspiring person, like you sharing your story with others. It's meaningful to me and I know it's going to be meaningful to heart kids and their family members as well. So thank you very much.
Thanks Sam, really appreciate the opportunity to come and talk to everyone. And it’s great that you share your story as well, it’s equally inspiring. And thanks also to the amazing HeartKids community. And the organisation. They do incredible things for so many of us even having the opportunity to have this conversation. So, massive thank you. And shout out to HeartKids as well.
Very grateful, very grateful. So you can find Elle’s full article, ‘Open heart surgery: Tips and tricks from a pro’ on the HeartKids blog. We'll post a link in the show notes. The full version includes a checklist for things that you should pack before going to hospital and questions you might want to ask your health care team before you leave hospital, it’s an incredibly helpful resource for anyone having open-heart surgery. If this episode has brought up anything for you, or you need some advice or guidance on your CHD journey, you can call the HeatKids Helpline on 1800 432 785 To access more information as well as find out more about the support HeartKids offers, visit the website at heartkids.org.au. The information in this podcast is not a substitute for medical advice from your doctor or health care team. Always talk to your doctor about matters that affect yours or your family's health.