https://www.angelawalkerreports.com/
https://www.angelawalkerreports.com/
Angela Walker
Host
00:09
Imagine being told you've got heart failure and you need a transplant within the next year to survive. That's what happened to my guest today, at the age of just 41. But so far, thanks to pioneering surgery, he's avoided the need for a heart transplant. I'm journalist Angela Walker, and in this podcast I talk to inspirational people and discuss under-reported issues. My guest today are BBC sports reporter and friend, Chris Slegg, and clinical psychologist Mina Arvanitopoulou. This podcast is sponsored by Doctors Net UK. With over 250,000 members, Doctors Net UK is the UK's largest professional network of GMC verified doctors. They're a community that enables you to make connections, find support and improve your clinical knowledge and practice, all in one place. Join your colleagues today. Membership is free. Mina Arvanitopoulou, Chris Slegg, thanks very much for joining me.
Thanks for having us, Angela.
01:10
Thank you for inviting us.
So, Mina, I'm looking forward to hearing from you and to finding out how you help patients like Chris. But first of all, Chris, let's find out about your story. When did you first realise that you had a problem with your heart?
Chris Slegg
Host
01:27
Yeah, I found out I had been born with this really rare condition called Ebstein's Anomaly back in the year 2000 actually. So I was 22 at that point. I was at Sheffield University doing a journalism degree and I was just finding it increasingly hard. Sheffield's a really hilly place and just walking to lectures I was getting breathless and I fought my asthma, which I've had since birth. It got worse, went to the GP at Sheffield and she listened to my chairs and she said you've got something wrong with your heart. We need to send you next door to the hospital, which is one of the best hospitals in the country Sheffield Heart Hospital. Very quickly, within a couple of days, they told me that I had this really rare condition.
02:04
I was leaving university that summer, which referred back down to Guy's and St Thomas' Hospital in London, where I've been ever since, and I was told that summer I was going to need surgery straight away to repair my leaking tricuspid valve. A second opinion meant that surgery never went ahead and with hindsight I think that was the right decision and then nothing really did happen until much, much further on. I had my first open heart surgery in the year 2020. In the end We'll come on to that later.
02:33
But yeah, it was when I was a student at Sheffield that I found out I'd been born with this congenital heart defect. I'd had it all my life. Looking back, it makes a lot more sense. I really struggled playing a sport at school. My inhalers never made any difference. I don't think that was asthma that was affecting me in my sport, although I did also have asthma. But yeah, it was when I was a 22-year-old student that I was diagnosed with this condition, which has become increasingly hard to live with. But I'm feeling pretty positive now about the challenges that probably still lie ahead as well.
Angela Walker
Host
03:03
So what exactly is this heart condition that you've got? You mentioned the tricuspid valve. What's going on there?
Chris Slegg
Host
03:10
Yeah, so Ebstein's Anomaly. It only affects one in. I think 200,000 people who are born are affected by this. It's a really rare condition and it's a disease of the right ventricle and also the tricuspid valve. Now, most congenital heart defects I've only learned this recently are of the left ventricle. Much more is known about those defects. Nearly all the drugs that exist are for the left ventricle. There's very little that can help the right ventricle. My valve was leaking, but not to a terrible extent, when it was discovered. Now there are children born with this who sadly do not survive. There are many who have to be operated on when they are born or very soon when they are very, very young. There's others who could live their whole life and never need surgery. And there's people right in the middle, like me. And when you're right in the middle, like me, no one really knows what to do.
03:57
I've learned that over the last few years and that's why I had this kind of confusing news when I was 20, we're going to operate, then we're not going to operate. And every year it was like we're not going to operate, we're not going to operate, we're not going to operate, we're not going to operate. We think it's the best thing to leave it until I got to the age of what? Was it 41? When they said no, I'd have been 40? And they said we need to operate. Now the leak's got. It's gone from moderate to severe. We need to operate. We're going to use this thing called a cone repair, where they twist your own valve into a, into a better shape. It's going to function better. We're very, very confident and I'd always been led to believe this for 20 years. But when we do this valve repair, you're going to be in a much better shape and you won't need any other surgical intervention in your life.
04:41
I had that valve repair in August 2020, kind of in the midst of COVID. I was very, very I felt very, very lucky at the time to even have an operation. The hospital felt almost deserted to me, so many people were having things canceled. My surgery went ahead. Everyone was very, very happy with it. They loved the way it looks. The valve repair to them looks amazing. You're going to go out of here. You're going to have a much better life.
05:03
Now, a year on, it's the summer of 2021. I was in a really bad place. I couldn't unload my own dishwasher up without my arms hurting. I couldn't hang the washing on the line without my arms hurting. My body was heavy. Suddenly, this condition I'd had all my life. I could feel it and to an extent I can still feel it now. It's only the last three years where I feel this disease and that was really really hard to cope with. But I kind of thought I've been told this has all gone well. You know, it's just, I'm just getting used to it.
05:36
I went back for my checkup a year after the surgery and I could visibly see the panic on the face of the people in the hospital. I knew straight away that they knew things were not going to be in my heart and I was told by kind of unfortunately, I was seen by a cardiologist I'd never seen before, because my own cardiologist was having to quarantine because of COVID. You know that was still affecting so many people in so many different ways and someone I'd never seen before told me you're going to need a transplant within a year and I fell apart. I fell apart because I had never, ever been prepared for that. It had never been mentioned to me. It had always been mentioned. We're going to repair the valve. We're really confident and obviously you know, nothing's ever guaranteed. The idea that I would need a heart transplant was never being said to me and I went home in a state of shock and I was too shocked to tell anyone. I didn't tell my wife.
06:27
For a couple of weeks I started to research heart transplants and with the best will in the world, I could only interpret everything that was written there positively in a very negative way because it had never been something I thought was going to be part of my life.
06:41
And you know there is still. I don't want to take away hope from anyone who's in that position. There will be people listening out there who may need a heart transplant, who are about to have one, who have one, and there's hope. There's plenty of hope. I've spoken to people since, but when I learned about it and I read the stats and 50% of people survive more than five years I interpreted that as well. 50% don't. And obviously then you start to think what if I can't find a heart? What if my body doesn't accept it? And these are all things I may have to come to again, because the next step, if I need a next step, will be a transplant. There's nothing else I can do beyond what they've done, which we'll come on to later, but getting that news was something that sent me into a really difficult place mentally, and it's only thanks to Mina that I was able to get out of that.
Angela Walker
Host
07:26
So there you are. You go into hospital to have a checkup on an operation you've had to repair the valve and you get this life-altering news. You said it took you weeks before you could even share that news with your wife. What was going through your mind?
Chris Slegg
Host
07:43
To me. It felt and I am getting emotional now talking about it I felt that suddenly my whole future looked very, very different and I thought the minute I told anyone else about that, the whole of their future would look different too. And for as long as I could keep it a secret, in some ways it wasn't really real. It wasn't something we all had to admit and we all had to face. And I knew that the minute I told that news, not just to my wife but to my mum and my dad, that everything would be different for people and I wanted to delay that. And then my mum kind of realised I was holding something back and I just told her. I think I'd probably even told her just before. I told my wife and yeah, I mean, I have the most amazing wife, the most amazing parents, the most amazing friends, the most amazing colleagues, of which you were once one.
08:44
Angie it was great, great memories of working with you. Despite all of that support, I didn't feel I don't think strong enough, the right word. I just couldn't get myself into a position where I could articulate this and I didn't want to be the bearer of bad news. I'm so lucky until this point that I still have parents in very good health I have, my wife does. We haven't really had any sort of really life-altering news to have to face together and I felt like, oh, I'm kind of the one ruining the party if I have to tell everyone this.
09:20
It's in the run-up to Christmas as well. You're kind of thinking, try and put it off. But I wasn't able to do that and I'm glad I didn't. And the minute you share news it becomes so much easier. So everyone would be my advice to everyone Talk to someone, whoever it is, because the minute you start to share news, you can start to embrace that as your reality and other people around you. They're growing up and they realize they have to embrace it as part of their reality too. And all of us here we would do that to our loved ones too. So yeah, the minute I was able to share the news, things did start to get easier, but I still and it was much, much later before Mina came along, I still needed professional support, despite having an amazing support network around me.
Angela Walker
Host
10:09
Mina, it sounds from what Chris is saying that he was so worried about the effect that his illness was going to have on his loved ones. What he's talking about here he's not even talking about concern for his own health really, he's talking about the impact of his condition on his family. Is that something that you hear a lot from the patients that you work with?
Mina Arvanitopoulou
Host
10:34
Yes, absolutely and obviously. I'm not just talking about Chris. Everyone is very different. Everyone of us is very unique and we all have very different circumstances and we have different phases in life, but this is something that we see a lot for slightly different reasons, for people as well.
10:54
Sometimes this involves a fear of letting people down, perhaps, but I can also feel that and I'm not talking about Chris now, I'm generalising it can also feel that perhaps we have a lot of identities, lots of roles, lots of commitments in our lives and we feel that we're failing. There's a sense of failing in something, a sense of letting people down, but also us, perhaps not being the provider, for example, or the protector. We have these roles in our minds a lot of the time. We see that in men, but also in women. We can take slightly different contexts or formats, but yes, ultimately it's also about obviously considering our own pain and suffering, but also we can absorb our patient sorry, our family's pain and suffering and anxiety.
11:49
And I think a very important point that Chris made is about communication, because a lot of the times, what happens is that when patients have these news, they don't communicate straight away or even for a long duration they keep things to themselves about how they feel, even if the families do know about what's happening, but they tend to hold on to the most uncomfortable feeling. So then that creates it can create a lot of distance. The family doesn't know what to do, how to support the patient. They have their own understanding, their own assumptions about what a patient may be feeling, but also the patient is not fully aware about how others feel. So that creates a lot of distance and lack of support, because you don't have that ability, that opportunity really to get and to receive and give the punch.
Angela Walker
Host
12:47
And Chris, I know that you're a devoted husband and a dad as well. You've got two small children, and I know that one of your greatest fears was for your kids, wasn't it?
Chris Slegg
Host
12:59
It was the overriding thing that upset me, having two small children, who are now eight and five, but were a couple of years younger at the point I got this news, just before Christmas 2021. I, as I say, I interpreted the need for a transplant, which I so far managed to avoid, in the most negative way I could interpret that news and although I wasn't receiving a terminal diagnosis and my heart goes out to anyone out there who has or will it felt very close to that for me. And what I've learned also is all of my life and I think we all have this and I certainly had it when I've learned at the age of 22, I had this serious condition how you think you would cope receiving bad news Certainly my instance, anyway, I can't say it's true for anyone how I thought I would cope in the event one day of receiving bad news was a million miles away from actually receiving really bad news. I was no matter how prepared I thought I would be one day perhaps to get that news. I just couldn't. I just wasn't anywhere close to being knowing how to deal with it. And yet the thing that upset me most was how would I ever tell my children, how would I prepare them if the very worst situation comes along and I have to be honest, I'm not completely there with that one yet either, because fortunately I'm not yet a situation where I have to do that but I felt before Christmas 2021, this is a beginning of the end.
14:28
I guess, not wanting to sound over dramatic and I'm going to have to prepare my children for the fact that they might be losing their dad and thankfully I'm not close to that yet but I was every day breaking down crying about what it would mean to my children if they lost their dad early on and how they would cope. It was more about, it was almost I was feeling how would they grieve, how would they be bereaved? It wasn't mourning my own loss as such. It was kind of mourning what my loss would mean to them. And just from a couple of people I've spoken to over the last 18 months with very different health conditions but serious, that seems to be something others have had to wear.
15:14
I think a lot of us feel like we and again I don't know if I could, but a lot of us feel like we could cope with that's going to happen to us, but coping with what it means to your family, your wife, your kids, your parents, your friends, and actually I'd say all of those things there, all those other people I mentioned wife, parents, friends. To me anyway, that was a million miles away from what it would mean to my kids. It was much, much harder for me to deal with that, what it would mean to my kids and to any of those other people, because I thought they'd get over it, they would. They're growing up, they'd be obviously very upset, they'd find a way, but I couldn't work out in my head how my kids could and that really really, really troubled me.
15:58
For well over a year from the day I received the news, I was well in this guy's eyes, I was definitely going to need to transplant over the year, probably until I started seeing Mina every single day. I would cry about that thought every single day for just over really a year until I met Mina and then I was able to start to deal more positively and now I feel a lot, lot more positive about the future I have and the present that I have.
Angela Walker
Host
16:27
Mina, when we're parents, we just want to protect our kids, don't we? And then for someone like Chris, he has this major, life changing news and it's completely out of his hands. He can't be that protector of his kids because there's nothing that he can do. Like, how can you help people like Chris come to terms with these feelings, overwhelming feelings that Chris said you know he was upset and crying about this every day because what could he do about it? How do you help people with feelings like that?
Mina Arvanitopoulou
Host
17:02
Well, there isn't one way that fits all, so obviously it depends how everyone is affected. I think most importantly is to provide that safe place to start reflecting on the different layers of impact. So, as Chris mentioned, one layer is how he felt this would affect his family, and there are so many other layers as well. Others are more important than perhaps somewhat more important than others. But I think most importantly is to start sort of encouraging that acceptance that Chris said. It will take time Coming to terms.
17:40
It's not something that happens overnight and it really takes a lot of effort to understand all the different very unpleasant emotions that someone has experienced and could experience. You know the grief, the sense of loss, trauma perhaps in a lot of cases you know Chris has had a few surgeries and the trauma of hearing those news. That shows us how the trauma is not only on the body but in the mind as well About fear, about your own loss, the uncertainty, the lack of control as you said, you use the word control. That is a very common thing not feeling in control about the future and all of these different unpleasant and very devastating situations and unpleasant feelings that someone has. I think there needs to be a safe place to be reflected, explored further, to allow the person to realize, understand themselves a lot better.
18:39
Something that I think it's a few points to make that are important is that a lot of people and we see that so much in cardiology, but also with other conditions as well there is a confusion between weakness and vulnerability. So, finally, if our body malfunctions in some way, we start feeling weak in ourselves. We think others see us as weak as well, and I think this is something that we need to start differentiating that our bodies can be vulnerable but that doesn't make us weak, and sort of concepts like that. It takes time to reflect and understand how they apply to us. But also there are ways of encouraging, perhaps leaving more in the moment, in the here and now, because this is the only thing we can control, this is the only thing we can be certain of.
19:32
And then there is another very important point, which we call post-traumatic growth, which is learning to live and to get a lot of meaning. Through adversity you develop other aspects of yourself that you haven't developed before before the challenges, and through that I guess one of the goals of therapy is to also the person learns to live a more meaningful life. You start evaluating how your life is how you'd like it to be. You start visualizing how you'd like your life to be, doing things that matter really matter to you.
Angela Walker
Host
20:16
That's really interesting because I had a colleague and he was always really happy and I said you always got a smile on your face, you're always really happy and he told me that he'd been involved in a near fatal car crash and after that he was so happy to be alive that he he it changed his whole outlook on life. So it's interesting that you mentioned that, chris. Like, did you feel resentful? Because you were like a young man, you know, you were a successful TV reporter with a beautiful wife and children. You're in your prime and your body's letting you down. Was there a resentment there? I don't think that.
Chris Slegg
Host
20:58
I don't feel that thought wasn't there. It was a real fear. It was a real fear of, yeah, how, how quickly might my life deteriorate, my quality of life and, like I'm so lucky to have everything that I have physically and the health that I still have and the health that I have anyway. But it was the fear of if my, if this person, this medical person, is telling me my luck, my heart can only survive another year. Then and and this was this, was the biggest fear, this was part of the biggest fear was I? What on earth? How, what is my life going to look like? I don't understand. You know, what is going to be left? And another fear I had was I had come out of hospital in August 2020, having had my tricuspid valve repaired, and everyone was very happy and everyone had pretty much assured me your life's going to be better. And again, obviously, I said there's no guarantee that I don't hold anything against them. That was a medical opinion. They looked at it. It looked good, they're happy, you're gonna go, your lot, your quality of life's gonna improve the year down the line, I felt like I had one bar left on the back, three. That was my heart and I thought they're telling me now that you know I'm gonna need a transplant, and this was before we got to the thing they've done in.
22:16
Instead, I thought, if anything else goes wrong, I felt like I couldn't not necessarily trust. But I couldn't believe anything anymore. I thought if something goes wrong again, there's gonna be nothing. I mean I'm gonna have no energy left at all. I couldn't imagine how I'd be able to carry on doing my job as a journalist, as you know, working in TV and radio. It's physical journalism, it's not. It's not just written journalism, which has its own challenges anyway, but physical journalism getting to different places, multiple places in a day, helping your camera operator carrying their very heavy kit around.
22:48
I don't think I've ever had that feeling of why me. That hasn't come to me and I don't blame anyone that it's come to. I think, as mean as said, you'll never meet anyone else who's in exactly the same position, exactly the same circumstances, who will deal with things in the same ways that. That resentment feeling wasn't one that came to me, but it was a massive fear of what my life is gonna look like and what it's gonna mean for my family just even getting the kids to school.
23:14
So at that point, as I'll say, two years ago, my having to push my youngest in a push chair was beyond me, and I couldn't imagine how am I gonna do the school run when my wife? What's that gonna mean for her? Just, you know, every single day of your life is gonna be impacted in a different way, and those are all things we may have to come to again one day, but right now I'm in a much better place, health wise, than I was in 2021, physically and mentally. A lot, lot better too. So, if anything, maybe receiving the bad news that I did in the way that I did, brutal though it was, has got me preparing for for a long, you know, mid to long-term future sooner than I might have done, so that's probably a helpful thing so when you and shared the news with your wife, sonia, how did you feel after you'd done that?
Angela Walker
Host
24:06
because that was a bit of a milestone, wasn't it? You'd kept that as a secret, your condition up until that point.
Chris Slegg
Host
24:13
I felt a lot better and I was. I was worried I was gonna feel a lot worse and I was worried. It was from that point on, both allies were just gonna be kind of thrown into disarray and negativity. But yeah, from the minute I it was, it was physically. You physically feel the weight of a secret lift off your body and also you take strength from the reaction of this person that you love, that loves you, who deals with it in a really strong way as my parents did too, because you know they're not, they're not gonna fold. They know they need to be strong for you and through that you take greater strength and you realize, obviously they are able to encompass this as part of their reality, to obviously they know it might change things, might change them immensely, it might change them to a smaller degree, but they are now ready for that change to. I mean, you're not gonna be able to keep our secret forever with this kind of condition.
25:10
So I felt I was so great, I was so happy that I'd been able to say it, because I've been keeping it inside for two weeks and yeah, that would be my advice to anyone. You know, don't bottle it up. You know it's tough, but you've got to. You've got to face reality and you've got to allow the loved ones around you who are going to be impacted to to face that too and to face it together. So you know again, not everyone has that, not everyone, listening, has that. And for anyone who doesn't have family around the mind you know I'm so lucky to have that I hope they have a friend they can turn to. If not, you know, find someone there's, there's support network out there. Again, I was so lucky to be offered counseling through my hospital with me and not everyone will have that. I feel so fortunate to have had it. But just find someone to talk to because a minute you can share news, it, just, it just helps it, it brings it, it makes it reality. And you realize just suddenly or I did at least.
26:11
I don't want to speak for everyone, because it's just one percent of you is, oh, yeah, it's okay making this reality. And then two percent of you is like, yeah, it's okay making this reality. And then the way I live now I've fully embraced my new reality and there's bits of it I hate, you know, but I've, I feel a lot more in control of it now. I think one of you said earlier the loss of control. That was something I've really struggled with because, yeah, you, you do, you realize like, yeah, for the first time really facing your own mortality. And I think that says me back to what I said earlier about we're all kind of think, we know we're prepared for the worst news, but actually getting it suddenly made me feel like I wasn't in control of anything at all. And now I feel like I am in control again.
Angela Walker
Host
26:56
I I'm realistic that there's could be some other bad things coming down the line, but I feel in control yeah, so you'd have this terrifying news that you would probably need a heart transplant within a year, but instead you actually had a different pioneering procedure. And tell us about that, chris, because that's brought you to where you are today. You're over a year since you were told that you would need a heart transplant within a year, so talk through what you, what the surgery you did have and how that helps and again.
Chris Slegg
Host
27:31
It's so amazing how you know there's so many different opinions out there and different cardiologists will think different things and, you know, I truly believe the vast majority of them are doing their very, very best, working in a very tough field and making the cause that they genuinely think are right. But I had a second. I went for a second opinion. I spent pretty much every second of free time that I had in the first half of 2022 getting my medical notes into a position to send out to the, the United States, where there's the Mayo Clinic, which is probably the leading clinic anywhere in the world regarding Ebstein's Anomaly. If they you know they will they've done more surgeries there and I even considered traveling to America to actually have an appointment. I was able to have one online for a, for a cost which, fortunately, I was able to afford. My long-term cardiologist had also done research and he suggested what we should do is this operation called the Glenn, where they take the main vein out of your heart and plug it straight into the main artery, and that takes about a third of the pressure off of your right ventricle. It means it has to do less work. He also went to Bristol Heart Hospital for a second opinion. They agreed with him and, independently, through what I was talking to with Boston, they agreed to, and it was only at that point. So this is about summer 2022, when I felt reassured that if kind of three different people my long-term cardiologist and the Mayo Clinic in America and Bristol Heart say the Glenn, and they sent me. Bristol sent me a document and it basically said this is your only option. It's that or a heart transplant, and to me it was just. It was a very easy decision, but I didn't have the trust it was actually going to work. So, having already had major sorry, I got bit of a cough having already had major heart surgery which had made my heart a lot worse in many ways, I was really worried that this wasn't was going to leave me in an even worse position. And so this second, second major heart surgery became a real mental challenge in the way that the first had never been. The first, to me, had just been a physical challenge, horrible though it was. Go into hospital, have your heart corrected, spend three months sadly not being able to do much, not be unable to work long time back to recovery, but I'd always felt in 2020 that tricotabin valve repair was going to be. It was going to be, was going to mend my heart as well as it could, and the future was going to be bright.
30:16
I'm now in a position where I'm facing having open heart surgery. Effectively, they don't open the heart, but I've got to open your chest again, they've got to move all the wiring at the your circulatory system around and I was told they'd never done one on an adult at this stage. So the Glen's very rare. I mean ebsticellar anomaly is very rare. A tricotabin valve repair in adults is very rare. The Glen, when it's done, is usually done at the same time as the tricotabin valve repair or, if not, it's usually done within days or weeks because it's become apparent quickly that the tricotabin repair alone hasn't been sufficient. So they do it Glenn that's called a late Glenn when it's done within days or weeks.
30:58
Mine was being done over a year and over two years, over two years after my tricotabin valve repair, and I was told this is the latest anywhere in the world we've ever done a Glenn on a well yeah, adult, all child and I was left feeling basically the only thing separating me from a heart transplant is something you've never done on an adult at this stage and I can accept now that I've always been quite a negative person and I could not see anyway this was going to improve things and so going into for this operation almost exactly it just over a year ago, october 2022 I probably went in with a quite a defeatist attitude.
31:43
I went into hospital without much faith this was going to make any difference at all and that probably made it all a lot harder as well, and as I was leaving the hospital and I was in tears, I was in tears pretty much every day in the hospital. My cardiologist I inherited I actually went, went to sleep for the operation with the cardiologists I've had for 20 years. I woke up now because he's about to retire in the care of Dr Hannah Douglas and she has a very, very different outlook from anything I've experienced in the past and she could see how troubled I was mentally by this and she just said you've been through a trauma. You've been through a trauma twice. You've been living with a trauma since you knew you had a heart condition and we will get you clinical psychologists. Now I think I don't know, meena, we'll know better, but even at St Thomas's, which is one of the best hospitals in the world. This is quite a new thing, and they've got far too many people to help as well.
Mina Arvanitopoulou
Host
32:43
Yeah, I had just literally started my job there. I think, yeah, yeah, so I'm lucky.
Chris Slegg
Host
32:50
And I wouldn't have had the again maybe strength is the right word I wouldn't have had the wherewithal to ask for this kind of support I had. I'll be honest, I had actually sought counselling in the middle of 2022, when I was dealing with the bad news, but I couldn't find anyone who knew what I was talking about really, and again, I don't blame them, but I was kind of looking for a specialism that really isn't there and to deal with what I was trying to go through, and I had a couple of sessions with different people and I was like no fault of their own, but that doesn't help me, and so I feel very lucky that I inherited a new cardiologist. He knew that this wasn't just a physical challenge coming out of open heart surgery.
Angela Walker
Host
33:30
But it seems like such an obvious thing that somebody who's been through such a physical trauma, the mental trauma of living with a condition that could be life-limiting, life-threatening, they're worried about their family, they're worried about their health, their work, their future. It seems really obvious that people going through that would need some emotional support. Mina, Shouldn't everybody get that when?
Mina Arvanitopoulou
Host
33:58
they're going through something like that.
34:00
Absolutely, and I think in the last 17 years some specializing cardiology in different trusts there is increasing sort of evidence for that, for our values, psychology and physical health.
34:17
I've always worked in physical health and from when I started to now there is increasing sort of funding and sort of value in that. Definitely, I mean in an ideal world every sort of significant clinic dealing with a physical injury or physical condition would have a psychologist, because now we know the impact and I know we're not there yet. I am very fortunate also to work in a department where we are left to decide how much input to give to patients. So you know, to use our own clinical decision whether someone might need a few sessions, perhaps mainly normalization, giving some validation to anything up to 20 or more sessions if needed. But also we are trained in delivering different models, different therapeutic approaches, to different needs. So we now can use a particular model which is called EMDR, which is applicable for trauma as well. We haven't had to needed to do that with Chris. That wasn't what he was needed at the time for Chris.
35:24
But what I'm saying is that we can tailor our approach to the needs and I think this is so, so important and I know, chris, you know he's done a lot of work around that. By just talking about his experience, this is very rare and I really wanted to really say how much I and all of us appreciate that, because you know a man in here for this but don't often sort of talk publicly about how the particular situation, particular experience but adventure, physical health, sort of affected them. So, yeah, that's the thing.
Angela Walker
Host
36:00
Thank you, chris, for sharing what you've been going through with us, because I can see, I can feel the trauma. I can feel the emotion is still really raw, isn't it? So what is it that's made you want to share your experience?
Chris Slegg
Host
36:15
I guess because I've learned so much from it too and I didn't see the condition I had that I've had all my life, that I became aware of when I was 22, which really started to impact me in my early forces. I never saw that as a mental challenge. I never. I always saw it as a physical challenge and I think for I've learned so much in the last year and I've reflected so much and I'm able to do that in a much more positive way I realize now I lived in denial of this condition for a good 20 years and actually, obviously some of that denial is probably beneficial and helpful and I probably needed it, because learning at the age of 22, that you've got this condition, you're able then to not contemplate it every day and why would you contemplate it every day? And I was able to kind of shut it away. But what I realized now was I just completely put it in this little box and I went through one massive heart surgery in August 2020, where it was still kind of I've gone into hospital, been cut open, so my heart back up had all these other minor operations as well. So I had about five before I even had the Glenn one major for kind of comparatively minor and just kind of soldiered on as we all do.
37:30
And I think we are at this, our generation is in this position where our parents, they were the children of people who were literally fighting in the Second World War. I've thought about this so much, so sorry to, and they were kind of very much of that. You just don't mown your soldier on. That's the advice from our parents, and our parents do that. They don't mown about anything, they just, you know, and we kind of had that bred into us. And I know, actually, when I was delivered the news about had Ed Steins anomaly, and my mum talks about this a lot actually the cardiologist kind of delivered the news as well look, nothing to worry about. I deal with babies who are literally dying in front of me and you've really got nothing to worry about. And we felt a little bit kind of like palmed off there, like in a way. But then I thought, yeah, no, he's right, what have I got to worry about? I'm not, you know, I'm lucky, my condition is nowhere near as bad as some people, but actually I've realized now that's quite a dangerous thought to carry around for 20 years. Right, of course we will have sympathy for people who are in a worse condition than us. We all do, but it doesn't detract at all from what you as an individual are going through, whatever that is. You know, whatever bad news you've had, it doesn't matter where it is on this health spectrum, it doesn't matter that there's millions of people worse off than you or you know millions of people kind of with what you might see as letter. It's changing your life. It's going to change your life, whatever news you've just had, and that's going to be hard to deal with. And you have to be able to accept that. And I think you know this word.
38:57
Guilt comes up a lot, and I was always. I don't feel guilty. I realize now a lot of that is guilt, a lot of it is I shouldn't be moaning, I shouldn't be worrying about this thing I've got because others are worse off. Well, actually, of course, others are worse off and you're always going to have empathy for them, but you have to be able to accept this is changing my life, this is affecting me, and so I never, really I never felt like I wanted to talk about it or let people see it was affecting my life, until I guess it got to the point where it so obviously was and I had to, and then all of this stuff was overwhelming I mean, that's a word that's come up a lot. It was overwhelming, I couldn't deal with it. So why I'm talking about it? For many one of the reasons is because of mental health aspects of having open heart surgery. An open heart surgery in itself and having Dr Anna Douglas describe it as a trauma gave me so much. Yeah, wow, I've been through a trauma. I get that.
Angela Walker
Host
39:54
Validation, I guess.
Chris Slegg
Host
39:55
Yeah, that it was. It was like a validation of that. The other reason I want to talk about it is ebstions are normally no one talks about it. You just don't hear about it because it's so so, so, so rare. And when I've tried to find other support or anything written in the past, there's so little there about it. It's there's just not going. As Dr Anna Douglas will say, all of the research is going into the left ventricle. We need more research into diseases of the right ventricle, like ebstions. There's barely any drugs that can help with the right ventricle.
40:28
So I want to talk more about ebstions. I want people to become aware of it. I want people who have it to know it exists. For many years I've kind of I've got this thing and I talk about it to people and I'm like what is it? I don't really know. And you know I've now found a couple of support groups on Facebook one in the US, one in the US, one here in the UK which not everyone would find that sort of thing helpful. Sometimes I don't actually find it helpful, sometimes I do. People obviously use it in different ways. Some people share an awful lot of information which, to me, sometimes I wouldn't want to share that much and I feel it hard to see that much. You know everyone's got to gauge what works for them. But yeah, I want to talk about ebstions. I want people to know it exists, I want people to know how it affects people and it affects people in different ways, to different degrees, and I want people to understand that open heart surgery is a huge mental challenge and no one should feel.
41:16
I know a friend of mine, and he won't mind me saying, said with the first operation I was just routine. Now, open heart surgery, you'll be fine, and I kind of agreed and I was, like you know, deep down I didn't agree. Deep down I was terrified and it's not routine. It's not routine. You're allowed to be scared. It's going to impact you. You're almost certainly going to be okay, because it's amazing what we can do in this country. You're almost certainly going to be able to recover okay and in most cases you're probably going to have a better quality of life. Fingers crossed, but it's scary.
Angela Walker
Host
41:48
Being in intensive care is intense Of course, and it was COVID as well, wasn't it? It was. Covid, you're under that obvious pressure that we're all under as well. So you had this procedure the late Glenn and that was just over a year ago. So how did that work out for you? Has it improved your life? Has it helped your heart?
Chris Slegg
Host
42:11
So we're just over a year on and I had to check up a couple of weeks ago and they said it's stable. They said it hasn't improved, it hasn't got worse. Just for a couple of minutes I felt a bit down, I'll be honest. I felt a bit down that it hadn't improved. But then I felt a lot, lot better that it hasn't got worse, because I was. You know, I'm nearly two years on now from having been told you're going to need a heart transplant within a year. I've still got my own heart and I actually feel a lot better than a year ago. So I kind of thought you know, obviously they've got to tell me what their scans show and they've got to be very honest about their opinion and I wouldn't want them to be anything else. But actually I feel better. I feel physically better. I can hang the washing up, I can unload the dishwasher, I can do simple household tasks. I feel like I have more energy. Mentally. I feel so much better.
Angela Walker
Host
43:00
You look really well, chris. You've got a bit of color in your cheeks and you definitely seem a lot more upbeat than I know you were a while back. Nina, what kind of strategies can you give people like Chris, who've got this burden that they're carrying around with them? How can they accept this new reality that they're living with and the way that it might change their future? How do you help them?
Mina Arvanitopoulou
Host
43:28
It's a really good question. There isn't again, there isn't one or five, let's say, strategies that sort of make that happen. I think, again, it's a process. It's important to understand that therapy is not always about fixing something, it's just also a lot. You know, Chris made a really interesting point and said that in different ways a few times about allowing yourself to really validate your experience and to acknowledge the trauma that you've been through.
43:56
I think this is one of the first things, and I would also sum it up using the word self-compassion. So it's not about comparing yourself to others, but it's about understanding how certain events or health conditions have affected us and on the different layers. And there's another point that Chris made that I also wanted to touch upon, which is what we call toxic positivity. I don't know if you've ever sort of come across that concept, which is about sometimes we do it to ourselves, Sometimes we do it to others by saying, oh, you know, I'm lucky to have had that, I shouldn't complain, or you're lucky to be alive, and that really what it does, if someone says that to us, for example, at the time where really we're hurting, but someone says, oh, you're lucky to be alive, almost gives us the sense that we shouldn't really complain and that invalidates the whole experience and it really shuts us down. And so I think coming back to that communication is key, sharing our experiences and also a note that I made earlier on what Chris was saying. It's what he was describing, what it was like for him talking about the experience to his family. It's about showing vulnerability and that can really make us still much, much stronger when we feel, when we actually allow others to see that vulnerability in us. There's so much strength in that.
45:21
So other things that I would sort of continue, perhaps more generically sort of commenting on. It would be about offsetting realistic expectations. But that's a lot. That's to do a lot with our self image. So there's a lot of work to be done to understand about what our self image sort of involves.
45:42
And we said earlier that if the body sort of malfunctions, some people feel really that they're suffering because there's nothing else for them. If they don't feel physically strong, they feel like they're failing in life. So again, it's about understanding other things that they can offer, that they can experience with their mind, with other, with their personality, with the way they think, the way they experience situations, relationships. It's not only about the body Setting realistic goals, risk expectations, find meaningful relationships, invest in relationships rather than materials and money and being productive. We'd rather invest in relationships, relationships with our loved ones, relationships with ourselves. And again coming back to the self compassion. I think that's so important and we see that so little at the moment and in life generally. And what Chris said earlier about how we perhaps a lot of us have been taught to push through and to not really talk about things or admit that we're struggling.
46:51
I think if we are able to soften that and to understand that it's okay.
Angela Walker
Host
46:58
It's interesting what Chris was saying, because it's all about this British stiff upper lip. We're kind of trained, aren't we, to keep calm and carry on even when there's this trauma, and I think, especially for men. Actually, they're told that they have to be brought up in a way that they have to be a protector and that they have to be strong and that it's not really manly to show this vulnerability. But I think what Chris is showing is that it is really important that men do speak out when they're troubled, because you feel so much better for it, don't you, chris? Now?
Chris Slegg
Host
47:36
Yeah, without any doubt, I definitely feel that is a generational thing. I think my generation is just about the first generation of men particularly who is kind of able now to start to talk about the way things impact them like this. I don't think people much older than me have been able to do that and I really feel for them it's so important to be able to talk and I don't think I'd have thought I would never have been dismissive of that for anyone. But even five years ago I don't think I'd have truly believed it would be something that would help me. And now I feel it to such an extent and I just wanted to pick up on something mean, as I said there as well about material things, because in a way that feels very, very separate to any of the issues I dealt with. But I've never thought of myself as a materialistic person. But one of the very first session that I saw me in or it would have been in December last year and I just saw a couple of months after this latest operation, the Glenn and early days of recovery really looking back and I saw my kids in their nativity play and I just felt really, really sad because I was still convinced this was going to be the first last time. Somehow I was still convinced this is going to be the last time I'm ever going to see them in an activity play, and I remember talking with Mina about that in the first session I had with her and I had this quandary of I need to just quit my job, travel around the world, have this most amazing last year, perhaps, my life with my family, but at the same time, that's not realistic because I could be here for a long time. I can't afford to do that. I don't want to quit my job and I don't want them to have to. I don't want to tell them everything. And why are we doing this? And I've never been able to pinpoint. I don't. I don't even know why talking to me has been so helpful. There wasn't like a silver bullet, there wasn't like this amazing thing.
49:25
But somehow through those conversations in the past, I thought, oh, this is just. This is just a day in the park, and 90% of me would still be thinking about work and what I need to do for work. And now that day a day in the park. I know it sounds cheesy, feels so, so special.
49:42
It's not just a day in the park. This is time on my kids and I would say now I don't think you can ever switch it off if you care about your job, and I'd say 10% of me might be thinking about my job now and 90% is thinking about that day in the park and valuing that day in the park, whereas in the past I'd have been there. This is just a day in the park thinking about checking my phone, thinking about emails and like I was so worried my life was about to end and I wasn't going to have any time with my kids. Now I value that free time I have, not just with my kids, but, like you know, if you're lucky enough to be able to go to the theater, immerse yourself in it. Don't go there, but still be thinking about work.
Angela Walker
Host
50:19
I know it's from living in the present.
Chris Slegg
Host
50:21
Living in the present, which I would never again. These things would have felt a bit like to me few years back. I wouldn't have blamed or been mocking anyone else, but for me it would have been like, yeah, we're living in it, we all live in the presence, or whatever. Now I really get it. I really get it Like, and that's the, that is the most special thing you're going to have time with the people around you, your friends, your family, whatever family you have. Just value that time.
Angela Walker
Host
50:44
You look like you found this new kind of joy in your life, Chris.
Chris Slegg
Host
50:49
And I've always had a really happy life. I've always loved my job, my family, my friends. But I do feel a new level of that now. It's kind of again stuff I wouldn't have, like mindfulness. I guess to a degree it's my version of that and I still don't quite get what that is. But definitely taking just appreciation in the moment and the days that you have and what is around you and the health that you still have to, there's so much that I am still able to do and for two years of kind of fearing what I wouldn't be able to do anymore, now it's valuing what there's so so much that I am still able to do. So yeah, it is a real shift of a mindset and I don't quite know how it happened, but it was just being able to talk to someone who is professionally there to listen to you and who you can say anything without worrying that you're going to ruin their day.
51:41
I didn't want to share everything with my wife and my mom because they don't really have an answer. No one has an answer, but I feel like I was going to have an impact on them. So I admit I'm really lucky to have me in this support. Not everyone's going to be able to find that, but to just be able to talk about my fears, my insecurities, to say anything and know that it's okay to say it and share it with her made a big, big difference.
Angela Walker
Host
52:10
And what does the future hold now, chris? I mean, you said that your heart's stable, but it hadn't improved. What do you have to do? Is it kind of a watch and waiting kind of scenario?
Chris Slegg
Host
52:23
Yeah it has been for most of my life. I guess it's like it's just monitoring it. Now my heart's in heart failure. I might not have this right. I don't want to, but my understanding of what I've been told is, once your heart's in heart failure, you can't reverse heart failure.
52:36
Heart failure can go on for a very long time. It can go very quickly to the point where you would need to transplant and it can also go in fits and starts, so it can progress and then slow and progress and no one can really tell me much more than that, other than the Glen has stopped it getting worse over this last year and again dealing with uncertainty. So I've always struggled with but I feel a lot more equipped to do that, having spoken to me. Now I will, year by year, I'll have to go back and one day they might say you're going to need a transplant and that's a reality that I just have to deal with. They may not.
53:14
I may be really lucky and I can live the rest of my natural life and not have to resort to that, but it is still a reality I have to have to face. I'm really happy that I had the Glen. I definitely feel better than a year ago and I feel better prepared, much, much better prepared for having been able to talk about it and got mental health support, much, much better equipped to deal with any bad news I might have to deal with again. So yeah, overridingly I'm in a positive place and I feel like mine is a positive story, and that's another reason I wanted to share it.
Angela Walker
Host
53:50
Thank you for sharing it and me, chris. He does sound mentally in a much better place than I know he was when he had that devastating news and you know, as he said, he found it totally overwhelming. Would you like to see more psychologists like you available to help people like Chris who've had hard to bear news?
Mina Arvanitopoulou
Host
54:14
Absolutely, they're not enough of us and they're all. All the services are so busy. We acknowledge the impact and they're just not enough of us. We have long waiting list and it can take us up to six months now to see patients, and we are aware that you know patients need to see us. When they're actually going through it, it could be just before surgery or just after surgery, like in Chris's case. So, you know, in order for us to be able to be there for patients when they need us, we need more of a absolutely.
Angela Walker
Host
54:47
And we know, don't we, that being able to go into surgery with a positive outlook can be beneficial towards the outcome. It's, can't it?
Mina Arvanitopoulou
Host
54:56
Absolutely During after, in terms of how we look after ourselves, how we engage, how we cooperate, how we adhere to all these lifestyle changes that perhaps we need to make, how to seek support, how to manage situations and work, all of that I mean, I think psychology should be and I think in a lot of cases it's very valid and I can see that but I think it needs to sort of spread, spread even more.
Angela Walker
Host
55:29
Is there any way that somebody who's had some life changing news they might have found out they've got a condition or an illness or they need a procedure or something like that? If somebody's in that situation and they're feeling overwhelmed, where can they go for help?
Mina Arvanitopoulou
Host
55:46
Well, we would assume that they will be under cardiology, under a hospital. So first we would recommend to ask in their teams if there is psychology. If there isn't, they can always try the British Heart Foundation and see if there are any local resources, any group supports in their area. If that and for that, if for some reason there isn't where they live, then it's important to know that each borough has a mental sort of health team for mild and moderate difficulties, which are called talking therapy or IAPT they go by both names mainly talking therapy now. So that's definitely something to consider. They may get they won't be getting perhaps the specialist support that they might need at that point, but it could definitely be helpful to make them understand, make sense of what's happening first and to feel a bit better equipped to deal with this uncertainty and what they're experiencing. Really.
Angela Walker
Host
56:46
Thank you so much, and thank you, chris, so much for sharing your story, and I hope that you go on and that your health improves further. So thank you for telling us all about what you've been going through. Thanks, Angie.
Chris Slegg
Host
56:58
No, it's been a real privilege. I'm grateful for the opportunity to talk about Ebstein's and the mental health challenge of heart surgery. To keep up the great work with your podcast, because that's really helped me to listen to your podcast and the inspirational stories other people have been sharing on it. I certainly feel that people, a lot of people, take heart and inspiration and a bit of strength from hearing what others have been able to cope with, and I think your series is invaluable for that. So thank you for the podcast.
Angela Walker
Host
57:29
Thank you so much for saying that, thanks Chris, thanks Mina.
Mina Arvanitopoulou
Host
57:32
And thank you Angie as well. It's been an amazing opportunity and thank you, Chris, and you know how I found our work together so rewarding, so thank you so much.
Chris Slegg
Host
57:42
Thank you, You're absolutely yeah, I can't tell you how valuable you've been to my whole life outlook, so I'm so grateful I got the chance to to come under your care and, yeah, I'll be forever grateful.
Mina Arvanitopoulou
Host
57:55
Thank you. Thank you, this might be a first actually for patients and therapists to be alive together and they're publicly talking.
Angela Walker
Host
58:02
I don't know, it's lovely to hear you, chris, that you've got so much support from Mina, and Mina's obviously gets a lot of enjoyment from helping you as well. It's wonderful. Yeah, absolutely, thank you both so much. Thank you. I'm journalist Angela Walker, and today I've been in conversation with BBC Sports reporter Chris Slegg and clinical psychologist Mina Arvranita Pulu. I do hope you've enjoyed the show. Please take a moment to rate and review, because that means that the algorithms mean the podcast will get shown to more people, and you can get in touch with me through my website, angelawalkerreportscom. Until next time, goodbye.