Never ignore symptoms of ill health

Enter description here ahead of publishing...

Transcript

Johnny Thomson  00:11
Being diagnosed with a serious health condition is something many of us will have to face at some point in our lives. So how would you deal with it? Hi, everyone. My name is Johnny Thomson, and welcome to another episode of our People At The Heart podcast. Where we like to chat about all kinds of things, both serious and lighthearted, connected with our team and our work here at RiskSTOP Group. Now, more than a million people in the UK are living with heart failure. And one of our colleagues here, at RiskSTOP, has decided he'd like to share that he is one of them. Now, I understand this news may come as a bit of a shock to many of you listening in, but I want you to firstly feel reassured that he's okay. And secondly, talking about his condition is something, my guest today, one of RiskSTOP's risk consultants, Shaun Small, very much wants to talk about. Hi, Shaun, I'd normally ask someone at this point, how are you? But after an introduction like that, it's not really a throwaway question this time. So genuinely, how are you?

Shaun Small  01:23
I'm feeling actually pretty good at the moment. I am on a lot of medication. But generally testing and medication has been going very well since diagnosis in November last year.

Johnny Thomson  01:37
You look well.

Shaun Small  01:38
Thank you. Well, apparently I was quite grey at some points prior to my diagnosis. I did not notice this. But it was pointed out by very many people saying: "Oh, you look much better." which is a bit of a shock, because I didn't know I looked worse.

Johnny Thomson  01:53
Yeah, it's awful when people do that. So let's wind back to the very beginning, Shaun and tell me, first of all, how you came to be diagnosed. Where does this story around this heart failure and heart condition begin? 

Shaun Small  02:11
Well, it goes back quite a long time. I realised in 2022 that I had probably an issue, what I thought was my lungs. I struggled to get up a hill at a venue that I've been going to for years, struggled a little bit with dog walking and certain areas, we go up on the hills. And I've always been very good walking. So I put it down to having COVID earlier in the year and thought you know, I'll leave it a bit longer, it'll probably be okay. As we went into 2023, I felt a bit better in myself with regards to the hills, but noticed I was getting pressure, especially when a laid down at night. It was only briefly, it wasn't pain, but it was just a bit of chest pressure. And as with anything like this, I eventually ended up dizzy, I went to the doctor. They initially misdiagnosed me and said I had dizziness and prescribed some medication for that. But I also had an arrhythmia, the heart was beating irregularly. I also had some other issues with regards to it. So they got me in for a chest scan, which I at this point, I still thought this was an issue with my lungs. It was then pointed out to me that the x-ray, my chest x-ray, was for the heart. That came back as enlarged. I had some further tests, which showed my blood count was off the charts. And I went in for an echocardiogram, which shows how the blood is pumped around the heart and how much work the heart is doing. And at that point, I came out to see the consultant and they said I had severe heart failure. Which was quite a shock, to say the least. So my heart, the left side of my heart is operating at around 10% and it should be between 55 and 70%, to give you an indicator of how bad it was at that point. Medication, they put me on straightaway. And that stopped the arrhythmia and generally felt much better on the medication than I had previously on that, there's been some side effects to it and tiredness. But yeah, all-in-all, at this point, with other tests to come I am feeling better. 

Johnny Thomson  04:31
How did you feel, Shaun, in that moment? Because I mean, that term 'severe heart failure', I don't know about everyone listening in but that that would sound pretty scary to me if someone told me that. 

Shaun Small  04:44
Yeah, in the lead up to this there was, my wife's a medical professional and lots of her friends are medical professionals. So we got the "Oh, you know, it might be a valve or perhaps it's one of your arteries, you might have to have a stent fitted". So, all of those things are operable, and they can do something about so in my mind, that's sort of what I geared up towards. But the heart muscle isn't operable, and there's nothing they can do with regards to fixing it. So, yeah, it was quite a shock. Although, set off slightly by the fact that the consultant kept looking at the report in front of him, looking at me, looking back at the report, and then going "Are you sure you're not in any pain?" And I was like, "No, I'm not." But it manifests itself in many different ways. So as I've since found out, by doing, obviously, Google research, which I then got told off by the heart failure team at Musgrove Hospital, who've been brilliant. They said, "Don't do any googling of this, it will not make you feel better."

Johnny Thomson  05:53
What about your family and those closest to you as well? I guess, it's not just you who would have been shocked by that by that diagnosis?

Shaun Small  06:01
Yeah, telling everyone is the hardest thing. I called my children over one at a time and just explained to them, and then to the parents. I've still got a set of grandparents, in their 90s now. So, saying to them, this is the situation. And bless them, they're very much that "Oh, I'm sure the doctors will get you sorted." Like, well, okay... But it's telling work. To be honest, of everyone to tell, I knew work would be the easiest because I know RiskSTOP. I have been here for 17 years nearly. It was always going to be an easy conversation. And they've been brilliant, the team have been brilliant. Asking do I want to change my work. My work hours, you know, these things. They want to look after you straightaway. That's their first priority, not, "Oh, how are we going to get your work done?" But, "How are you going to be?" So I knew that would be an easier conversation to have. And to be honest, I didn't want my work to change because I don't want to be different. It doesn't affect my work in any way apart from, I wouldn't particularly want to do a survey at the top of a mountain at the moment. But then to be fair, I wouldn't want to do that before!

Johnny Thomson  07:21
Yeah. And that's one of the reasons as well, you mentioned it is difficult having those conversations and so on, as well. I think that's one of the reasons you wanted to do this, isn't it? Because I'm sure you, you're probably conscious that not everyone will know about your personal circumstances. It's almost a good way of getting the word out there, isn't it? 

Shaun Small  07:41
Absolutely. Well, firstly I should apologise because there's a couple of people I probably would have told. And due to circumstances, 'Oh, I'll tell them at the Christmas party'. Unfortunately, I had to leave early because I wasn't feeling particularly well. So there's a couple of people I didn't catch up on. But, the thing we discussed prior to this, really, was the fact that, people in my generation, and I'm in my 50s, especially men, don't talk about their health. And I had thought about doing this and then I thought, whether I put an Iris post on or, something along those lines. And Danny said something. He said, "We don't talk about our health." And I thought that's actually very true. There's people out there, and I'm hoping the younger generation are not the same. But there's always been that onus on well, you know, have a cup of tea it'll go away. You'll be fine, you don't want to bother anybody with it. And, in my instance, it probably wouldn't have affected the outcome, because it's very likely that the damage was done prior to me noticing, in 2022. But there will be people out there who may have symptoms of things that they don't know what they are, and are reluctant to go and see the GP about it and everything that entails. And are reluctant to talk to other people about it. And I think if we can have, if one person has a conversation out of this, with regard to their health, it may help.

Johnny Thomson  07:41
Yeah, it's an important message. In your experience, as well, there was that initial first misdiagnosis. So that almost tells you that you haven't just got to have the courage to make that first appointment, but you almost have to be quite determined to make sure as well that you're not just dismissed as it being something simple. If you continue to feel unwell, don't be afraid to go back and challenge almost and say, 'Look, I've taken the medicine or whatever it is you thought it was, it was something simple in the first place, but I'm still feeling like that.' It's a really, really important message, isn't it Shaun?

Shaun Small  09:53
Absolutely. You'll know your own body if there's something wrong. I knew there was something wrong. I didn't tie the things together. And it was the locum doctor who looked at me about dizziness, initially, who gave me medication, but pointed out that I had an arrhythmia, but said it was a regular, irregular heartbeat, and left it at that. Now it was on the notes. Fortunately, my wife just sat and took my pulse every night and said, "This isn't irregular, regular, it shouldn't be like this at all." That was a precursor to going back to the GP and having the chest x-ray. And to be honest, they were brilliant from that point onwards. I'd had a scan, the x-ray, an echocardiogram, and two ECGs, and blood tests within 10 days, and we're seeing the cardiologist. So they got through it really quickly. And as I say, the heart failure team who followed up, they've been brilliant. They're getting my medication to a level now where side effects for me, one of the worst ones being six foot two. My blood pressure is fine, the rest of my heart function is fine, the arteries are clear. I've had a full heart CT scan, but a lot of medications to lower your blood pressure to put as little pressure on your heart as possible. Which means every time I stand up, I feel lightheaded, sometimes dizzy, but apart from tiredness on occasion, that's really the only side effects I'm seeing at the moment. But some of the medications come with other side effects that they had to continue to be monitored. So I mean, blood tests quite regularly, which is not my favourite thing. 

Johnny Thomson  09:54
Yeah. So it's not really impacting on your day to day, on your work, and so on?

Shaun Small  11:08
No, I just have to shedule in that I take a lot of medication. Six in the morning and two in the evening. I have spare sets in the car, in case I forget it in the morning. You wouldn't think you'd be able to forget something as important as that. But when you're running around in a house full, and dropping people to school and college and getting your work stuff packed, it's amazing that you can get halfway down the M5 and realise that really important part of your life you've forgotten so I keep spares in the car just in case.

Johnny Thomson  12:16
The other thing as well going back to what we said about difficult conversations as well. It does strike me with something like this. I guess a lot of people really don't know how to react when you've told them this, but I'm sure they'll probably have some questions or some questions that they feel that they're not comfortable, particularly comfortable asking, but still an immediate question comes to mind. I'm going to throw one at you now, if you don't mind. But what is the prognosis here? What's your future look like, Shaun? And what's the expectation? 

Shaun Small  12:49
It's a very grey area. So one of the things as I said, the heart failure team said was don't look up symptoms online. The prognosis for my condition, as with the readings I had, is one to five years, which is why you shouldn't read up on it. Because the heart failure team immediately said the research is 20 years old and it's based on people who are in their 70s. So firstly, one to five years when you're in your 70s isn't a bad span. And secondly, medications have changed quite a lot in the last 20 years as well. So although it's probably had an effect on my lifespan, we will never know how long. She said, I'm not at risk of a heart attack, which is your immediate worry. So all the other aspects of my heart are fine. It's just really the increased wear and tear with regards to the fact that one side is not doing the job it's supposed to do. But other than that, you know, with the medication, as long as there's no side effects from that, the prognosis is reasonably good.

Johnny Thomson  13:59
And there's another important message in that as well, in terms of don't fear that diagnosis, because you then have to find out more. As you clearly have done to understand a little bit more about what it means. I'm just thinking about what you said about the arrhythmia, for example. My mother is 92 years old, and she's had an arrhythmia for about 35 years, for example. So you know, your heart beating irregularly like that is something I would imagine people will become really scared of, if it suddenly started happening. But there's the evidence that you can't just necessarily make those assumptions. The important thing is to get the professional help, and information that supports you, isn't it?

Shaun Small  14:46
And it's getting the whole picture as well. Because one of the initial assessments said I had a thing called left bundle branch block, which is quite a mouthful in itself. But there's lots of things that that can indicate from so certainly don't google that one. But I sort of turned around to my Nan who, as I said, is in her 90s. And she said, "Oh, yeah, I've had that for years." So it's the other aspects of it that are important as well, getting the whole picture, and the whole story and listening to the professionals in this who've been, as I say, very good indeed.

Johnny Thomson  15:23
And what's the guidance? Are you advised to exercise, for example, with it? Or is that risky? Where's that balance?

Shaun Small  15:31
I'm keeping it to walking at the moment. So I try and do between five and ten thousand steps a day. It means that I don't get out of walking the dogs unfortunately, when it's raining. But that's the limit that they want me to do at the moment. The next step for me is another echocardiogram to see what the heart function is on the medication. And then they're looking to insert an Implantable Cardioverter Defibrillator, an ICD, which I keep mistaking as an IED. And I don't want to go through airport security with one of those. But that is basically a defibrillator that's built into your chest. And if you go into arrhythmia, it will shock you back to normal function. But that will be it really, unless it deteriorates any further, the heart muscle itself. In which case, the only answer then is a heart transplant.

Johnny Thomson  16:25
Right. Yeah. But you're a long way off that.

Shaun Small  16:27
I'm very hopeful we're a long way off that, yes. 

Johnny Thomson  16:30
Good, good, good. You mentioned that RiskSTOP Group has been very supportive of you Shaun. So, there's no fear in anyone who, maybe has a condition, that they don't need to hide that from, well, certainly from their employer here. 

Shaun Small  16:50
Absolutely. It's, as I say, that was easiest conversation I had. Dave and Sarah scheduled a meeting with me straightaway, just to say, 'How are you? What do you want to do?' And we talked it through at the time, and I'm sure we'll have another one in due course, as things progress. But, if you are worried about any aspect of that, don't be. If you haven't been with the RiskSTOP Group long it might be quite daunting to go and speak to your line manager. 

Johnny Thomson  17:26
But don't worry, you don't have to come on a podcast. 

Shaun Small  17:29
You don't have to come on the podcast to do it. No, not at all.

Johnny Thomson  17:34
So I mean, we are all different. We all like to handle things in a different way. This is a place where all of those different channels are open. If you want to speak confidentially with someone, then it's possible to do that, of course, as well. Through the various support services that our people have access to. The important thing is, is open up about it, isn't it?

Shaun Small  18:00
Absolutely. And people react in different ways. I am fairly laid back anyway, with regards to it. I'm quite pragmatic. I looked at it as this is what it is. You know, lots of people say, "Oh, what caused it?" Well, the cardiologist believes it's viral. Looking through, it fits in with when I had COVID in the end of 2021. There's no test to check for that. So there's not really any point in speculating on whether it was or wasn't because, that damage is there. It's not going to undo itself. So you need to look and see how I'm gonna progress in my life. I'm fortunate my wife's a medical professional, she will point out to me every five minutes that she saved my life. Which she has, but it was harder for her probably because she took a week off with my diagnosis, she was upset, obviously, but you know, I carried on working. I didn't want to be different. I didn't want it to make my life different. Because there are other changes, you know, weekends. When I initially started the medication, I spent a lot of it in bed because by the weekend I was rundown and tired, regenerate over the weekend and back to work on the Monday. I've got less and less of that as my body's adapted to the levels of medication. I feel much better. Still have some days where I'm quite tired. But I have other days where I feel as good as I did five years ago. So it's little steps forward, it's getting everything right and listening to the people around you. But I think listening to yourself. If I had been on my own I would not have gone back to the doctors after the wrong prescription for the dizziness. And who knows where I'd be now. It would've probably been something catastrophic would have happened to get me either to the doctor's or a&e. And I'd much rather if somebody is out there thinking 'Oh, I'm a bit worried about this symptom, but you know, it's probably nothing.' Actually go and get it checked.

Johnny Thomson  20:18
Well, on all of our behalfs pass our thanks on to your wife, for saving your life.

Shaun Small  20:24
Oh, she hasn't forgotten and I'm sure she never will. 

Johnny Thomson  20:28
It's not just because we like you Shaun, we need somebody out there doing all those surveys as well. 

Shaun Small  20:32
Absolutely. 

Johnny Thomson  20:35
Brilliant. Well, listen, Shaun, thank you very much for coming on. I think it's really quite brave of you, to be honest with you, to open up about this in a way that is honest with your colleagues. But I think also, really importantly, as you've highlighted all the way through this, the message is to not hold back. If you're worried about something, go and seek that help. It's really, really important, isn't it?

Shaun Small  21:04
Absolutely. Speak to somebody, whether it's a colleague or a professional. Get a third party perspective, sometimes it's useful to have somebody outside looking in, because they can be more subjective.

Johnny Thomson  21:18
And best wishes with it all from all of your colleagues here at RiskSTOP Group. 

Shaun Small  21:22
Thank you very much. 

Johnny Thomson  21:24
And that's all for this episode of RiskSTOP Group's People At The Heart podcast. Thank you very much for listening in. I, along with one or two other presenters, will be back soon with all kinds of things to talk about with different guests. So keep your eyes peeled for more episode announcements on Iris. And remember, here at RiskSTOP Group it's all about keeping people safe and secure, believing in social responsibility and sustainability. And until next time, everyone. Good bye for now.