Welcome to Words Of Sepsis, the podcast from Sepsis Research FEAT to mark Sepsis Awareness Month 2022.

In this episode you'll hear from Kimberley. She developed sepsis after coming home from a sunny Easter Weekend walk with her family. At first she thought it might be sunstroke, but she soon became very ill.

You'll hear how Kimberley's life has completely changed and why she was posting some very odd Facebook updates during her recovery!

Sepsis is a condition that still takes the lives of some 50,000 people in the UK every year.

That's about five lives lost every hour.

Our hope is that through these podcasts, many more people will become aware of sepsis and that some of the loss and suffering related to sepsis can be prevented as you increase your knowledge and the knowledge of others.

Do check out all eight episodes in the series and share them as widely as you can using them to start conversations with friends and family about sepsis.

It could save a life possibly even your own.

If you've been affected by anything you've heard, or you'd like more information about the groundbreaking research into sepsis that the charity funds please do visit our website. www.sepsisresearch.org.uk, where you can also make a donation.

You'll be helping us to save lives today and fund research for tomorrow.

Abi Dawson

Hi, I'm Abi. And I'd like to extend a very warm welcome to these Sepsis Research FEAT, Words Of Sepsis podcasts. Over the course of eight episodes, we'll be talking to sepsis survivors and their families about their experiences of sepsis. Some of the stories you hear may be quite painful, many are uplifting. They are stories of shock, fear, sometimes loss, often courage, but also of hope.

Sepsis is a condition that still takes the lives of some 50,000 people in the UK every year. That's about five lives lost every hour. Our hope is that through these podcasts, many more people will become aware of sepsis and that some of the loss and suffering related to sepsis can be prevented as you increase your knowledge and the knowledge of others.

So do please listen, share these words of sepsis and help to raise awareness and save lives.

In this episode, you'll be hearing from Kimberly, she developed sepsis very quickly and describes it as coming out of nowhwere.

Kimberley

We'd been for a walk along the beach, gone to a beer garden, had a couple of drinks outside, just having a nice chilled day and then when we got back home, I started to feel very cold and shivery, so I assumed that I got too much sun. Scottish not really used to nice weather, so you put it down to that kind of thing. I just thought, I feel a bit ropey. I had my blanket, duvet, my dressing gown, and I was still shivering, I couldn't get a heat in me. Then Nathan, my husband, made some dinner, so ate that and then was immediately sick. So at that point, I was like, off to bed, I'll feel better in the morning. I didn't feel better in the morning. I kept being sick all through the night. Nathan was getting increasingly worried. It was like there's just something off. He had one of these heart rate things on his watch, so he put his watch on me so I could kind of see what was going on and he decided to phone for an ambulance, despite the listen, you're overreacting, it's just a wee tummy bug. I will be absolutely fine. So he phoned the ambulance and then after half an hour or so, they hadn't arrived so he phoned them again and they were asking him to ask me questions so they could gauge my response. And at that point, I remember trying to speak, but it wasn't words coming out, it was gibberish gobbledygook. So I thought I was maybe having a stroke, started to panic. I couldn't stand up. I was still needing to be sick, but I had no strength in me and I started to get very scared at that point. It wasn't long after that the ambulance arrived and I can remember the real hubbub of there's people everywhere climbing all over the bed and giving me glucose and everything. I don't remember anything after that, until in hospital doctors telling me that I'd been in a coma for eight days. That I'd had meningococcal septicemia that had gone into severe septic shock. All my organs had shut down and they needed to put me in an induced coma to save my life. It's just a very bizarre thing to be told. You're like, it doesn't sound right because I was fine and I have been cold before, I've been sick before, and there was nothing in the early symptoms that made me concerned at that point. It was only the later confusion and not being able to speak that really started to scare me. But, yeah, it was such a surreal conversation, the doctor's telling me what had happened, being in a coma, there was a lot of confusion goes on anyway, because there's all the kind of hallucinations and weirdness, so you're never entirely sure what's real and what's not real. I can remember seeing the relief on Nathan and Lucy's face and everything yeah going this was pretty bad, this was really quite serious. Over the next few weeks, you start to piece together just how serious it had been. I can remember we'd been invited to my in laws for easter sunday. We were going to have roast lamb. I can remember thinking, I missed that and she would have already prepped all the veg. It's one of these really daft things that immediately pops in your head, like, she'll be so annoyed, she will put lots of effort into getting that already. And then I missed it.

Abi Dawson

Kimberly says that that's a feeling she felt a lot.

Kimberley

I think for me, the overwhelming feeling was guilt, because I knew that, I mean, I was not aware of what was going on in real life, but in real life, my husband, my mum, his parents, my daughter, everyone's there, really worried, constantly not sleeping, hardly eating, getting the sandwich from the hospital shop and just there all the time, not knowing what was going to happen. So I wake up, sort of like, all right, okay, well, I've missed eight days, but those eight days were horrific for the people I care about. So it felt kind of like, I'm sorry I put you through that. I wish that you'd known I would be okay at the end but nobody could tell them that. The doctors didn't know that. The doctors are telling them, well they told Nathan early doors, you kind of need to be telling people that if they want to see her, they'd better come in, because we don't know which way this is going to go. We've done all we can, we've thrown everything at it and there's now just a period of wait and hope. Which I can't imagine if the roles had been reversed and if it had been Nathan in that situation, how I would have coped with that hanging, just there is nothing you can do. You've just put all your faith in the NHS doctors and the treatments available and hope, it's just hope that it rallies. So the eight days, I had no idea of what was happening. I became aware, like, I would try and move and I couldn't move. I had no physical strength at all. I think you initially think you must be strapped down for your own safety, but you're not. You've just got all muscles have wasted. I had a feeding tube. I was on 24 hours dialysis because my kidneys had shut down, had a little bag of poo at the side of me, it's just all lovely stuff. And then I realised I couldn't see properly. Like, everything had a pinkish hue. My hands, feet, nose and lips had gone black. My tongue was black.

Abi Dawson

Kimberly says it was a confusing time for her and it was a lot for her to take in.

Kimberley

It's just trying to make sense of how could all this have happened from nowhere and I think initially the main concern that the doctors had was about my kidneys and my organs and things, but to me, that wasn't my main concern because they just do what they're supposed to do, I don't really know. But my hands and my feet were black and it was the one thing that nobody really was talking about. I mean, actually, I understand now, it's just one of these things it's not essential to live. It doesn't really matter in the grand scheme of things but I was like, will they come back? What's happening? Am I going to be facially disfigured? my nose? What's happening? I mean, when I think about it now, it seems quite silly, but my initial, I kept asking them, can you get somebody to just talk to me about what's going on? So they got a tissue viability nurse to come down and they took thermal imaging pictures so that they could see if the skin underneath the black was alive or dead. Thankfully, all but my feet were fine, and just some debriding over the next few weeks sorted that out. But it's just the disconcertion of waking up and you're like, parts of your body have died while you've been unconscious. You're like nobody did anything? What happened here? And they're like, yeah, well, we just wait and see. We focus on there was a lot more going on than your toes turning black. We had other fish to fry here, so, yeah, I think my priorities seemed all skewed because I was like, kidneys? I mean, what do they do? I don't know. It was all working. I felt okay, but that's only because I was hooked up to all the machines and I still kept having temperature spikes at night. So the constant taking of blood every few hours and they're checking for infection and we're going to have to move you onto a different antibiotic. So even once I was awake and on the way to recovery, there was still this kind of it could come back at any moment if we can't get all these other infections under control.

Abi Dawson

After just over a month in hospital, kimberly was discharged. But that wasn't the end of the story.

Kimberley

On discharge, there was still the we don't know about this, we don't know about that, we don't know what's going to happen here. A lot of unknowns just send you home and hope for the best. Constantly going back for more blood tests and all that kind of thing. I have been very lucky. Like, all my organs have fully returned function, and they weren't sure that they would, but there were like if someone has a kidney transplant, they've only got 50% function because they've only got the one. So even if we get you 50%, it's considered a success. At the point that the doctors had said, right, we're quite happy with you, I was up over 80% and then, like a year later, it's back up at 100. So actually, all the inside stuff started working properly by itself, which is just a miracle, really. And I think once I understood the reason for the peripherals turning black, your body just gets all the blood and pulls it to your organs to protect them, which is why you've not got blood at your fingertips, your toes or your nose. It's like you don't need it. It needs to go here to look after these organs. Yeah, your own body is amazing, but then, obviously, sepsis is your own body having a wee moment itself and going this infection, I've never seen anything like it, we need to throw in the nukes, let's get everything done, just kill everything. It's a bizarre thing, it can be so amazing, but then when it goes awry, it really goes to pot. I've had to have several surgeries on my feet, so I've had all my toes amputated now. It happened in various stages. To begin with, the hospital, were keen to let my toes auto amputate, the thought being, rather than create a new scar, which can lead to infection, and also when they amputate, they need to go into healthy tissue to draw that line, where as auto amputate and you might actually get some middle ground back. So they waited for everything to fall off, which took over a year of having black toes. The soles on my feet were black, just waiting every day, kind of like nurses coming in, giving them a wee wiggle, seeing if they're going to fall off. It became the most bizarre Facebook updates, like, yeah, half my toes have gone now. Something I never thought I'd be celebrating. It's so bizarre. Then after a year, I still had three toes that were just not budging. They were black, they were dead, but they just weren't going to give up. So they took me in and amputated them. Then another year went by and I still was having infections and still lots of nerve pain. So in January this year, I had more taken off to kind of get to the clean margins again. They're still not fully healed. One of the scars keeps opening up again, even though that was January but I'm still trying to get back to mobility again. I use my walker, I use a wheelchair or mobility scooter when I'm outside. I just want to get back to some sort of independence again, I guess and independence without pain, it's difficult. I understand that it's normal. It doesn't make it any easier knowing that it's normal and I just hope to get to a point where it's at a level that I can control and I'm just like, okay, so I need to do xyz today, it's going to hurt. I've got two days afterwards to recover again, but overall, if that's all that's left as a scar from my ordeal, I'm very lucky that's it I still have brain fog and fatigue and that kind of thing, but once I started working again, that has helped and you mentioned Wordle earlier, word all, sudoko, all these things, try and keep my brain working. It's like, right, I know you're not feeling it, but you need to keep going, you need to get back, you're a bright cookie let's do this. So it might just be like forgetting the word for something, which really frustrating, but again, we all have moments like that. It was going to happen eventually, it's just happened earlier than I thought.

Abi Dawson

It's been a journey for the whole family.

Kimberley

My husband, I mean, he's been absolutely amazing. He's had to become carer, carrying me in and out of the bath and lifting me everywhere. Those early days when I had no strength and bandages everywhere, but hes still, like making the tea every day and doing all the washing. When we got married, you have these plans for your life and Lucy is now she'll be 18 this year. There's this moment in time where she'll be off to university, maybe we can go travelling, maybe we can do this, we can do that and all that seems to have kind of gone for now, hopefully it will come back and we can do things going forward. But,life, yeah, the balance is definitely shifted and I feel really bad. My mum mentions every time she comes around that the place is a mess and we should get a cleaner and blah, blah, blah. I'm like, yeah, but do you not know that actually this is perfectly normal, that the house isn't as spic and span as it maybe used to be? Because Nathan is having to do all of it on his own and priorities, do you know what I mean? The place isn't dirty, it's just there's a pile of clothes there that was not taken through yet. Nathan I think we're probably a lot closer because we've been so reliant on each other and it's that realisation of just how much you actually really love that person, rely on that person, need that person, how they complete you. Which obviously we were in love before, but, you know, you've had that real kind of wow things were very nearly different. Lucy struggled, she was doing exams and things and I think it's a lot to deal with. Now it's got easier as she's got older, going to see her school shows and things there's always that she has to make extra arrangements because I have to come in the side door with wheelchair and all the other stuff. But actually rather than it being a course of embarrassment, which I thought it might be and I worried it would be. She's got this pride that I have overcome and she's showing me off to her friends. Look what my mum's done again. Everyone knows how much they love their mum and all that kind of stuff. But I think for her, It's that, yes, this is really cemented that care and that relationship because it nearly went. So it gives you that extra focus and cut out all the nonsense that goes on in life, the things that don't really matter, and actually focusing on what does matter.

Abi Dawson

Kimberly's experience of Sepsis has been life changing. Her courage and positivity in moving forward with her life after Sepsis is really inspiring, and we are so grateful for all that she does to raise awareness of Sepsis.

Abi Dawson

We really hope that listening to this Words Of Sepsis podcast has helped increase your awareness of sepsis. Do check out all eight episodes in the series and share them as widely as you can using them to start conversations with friends and family about sepsis. It could save a life, possibly even your own.

If you've been affected by anything you've heard, or you'd like more information about the groundbreaking research into sepsis that the charity funds please do visit our website. www.sepsisresearch.org.uk, where you can also make a donation.

You'll be helping us to save lives today and fund research for tomorrow.