In a change to the charity’s usual format in sharing a story of sepsis, we were pleased to be able to talk recently to writer, artist and health activist Amani, now aged 37. Originally broad-sided in her early 20s by an injury that subsequently led to chronic illness, repeat infections and multiple occurrences of sepsis, she is now passionate about raising awareness of sepsis, in general, but particularly for the thousands of people of all ages in the UK who use catheters. Sepsis Research FEAT was so grateful to have the chance to speak to Amani at length about her experience and her desire to help others through her own experience.
Sepsis Research FEAT (SRF):
Thank you for speaking to us Amani – we really appreciate your support in raising awareness of sepsis in this way.
I know you’ve had sepsis four times now – each time due to a UTI – and twice in the first six months of 2024 alone.
Amani:
I have – in February 2020, then June 2021, February 2024 and the end of May/beginning of June 2024.
SRF:
And what type of sepsis is it that you have had each time?
Amani:
It’s been urosepsis on all four occasions.
For nearly eight years I had to self-catheterize, which is when you insert and take out the catheter whenever you need to pee. Or I would have urethral catheters for a month or two. So I bounced between self-catheterising and urethral in-dwelling catheters. In November 2023, I had a suprapubic catheter fitted because my consultant was shocked that I’d lasted eight years catheterising myself – your urethra is just not designed to take constant catheterising every single day. Unfortunately the suprapubic catheter is causing even more havoc in my abdomen. I will end up at some point having to have surgery to remove my bladder – a procedure called a Cystectomy, resulting in a Urostomy – and I will then have a stoma, draining urine directly from my kidneys. I am trying to avoid that for as long as possible, but I am starting to have conversations with doctors about it now.
SRF:
So to go back to the beginning, can you tell me a bit about the work that did professionally in the past and how you first came to suffer from sepsis?
Amani:
I have done so many different things – I was an academic writer for a while, but when I stopped being able to do that because of my health I started to write a lot of articles about chronic illness – for the Huffington Post and other magazines.
I had started off being a water sports instructor and then I got into sport for international development, and I did that around the world, and then started a PhD, which I loved. I worked with Comic Relief, UNICEF and also UK Sport, but I had to quit because of my health. My main passion was being a researcher for sport development and travelling to different countries, working with sport for social change.
I guess my main passion now is telling my story in order to raise awareness and help people feel less isolated. And I’ve done that in different ways – whether it’s writing, drawing, or speaking over the last 12 years about mental health and physical health issues. As for hobbies, not a lot at the moment, but I’m very passionate about nature and swimming in any source of water I can find – it’s just the best medicine ever – and also drawing.
SRF:
Your first diagnosis of sepsis was basically as a result of an injury you sustained when you were coasteering. Is that right?
Amani:
Yes, although it’s kind of complicated. It was when I was a water sports instructor that I first damaged my back, which led to something called Cauda Equina, which itself led to neurogenic bladder. Following that injury, unfortunately I wasn’t operated on, so I was left with permanent neurogenic bladder and bowel, which resulted in me not being able to pee. So since 2016, I’ve constantly had to use catheters, which is what has caused my sepsis each time. I have a suprapubic catheter now, which comes out of the abdomen. I was talking to my gynaecologist the other day about how there are actually an increasing number of young women with the same type of catheter or who are self-catheterising or who have in-dwelling urethral catheters. Sometimes it’s due to endometriosis or something called Fowler’s Syndrome or, like me, neurogenic bladder. Through social media I have discovered that there are many more women affected than I had previously realised. And I even discovered that a friend of mine had lost both of her grandparents to catheter-related sepsis. A lot of older people end up with things like a broken hip or pneumonia and they’re given a urethral catheter because they can’t get up and out of bed to go to the toilet, and they then end up with a really nasty infection and sepsis because of the catheter.
I know that I would not be here if I hadn’t – in those times I had sepsis – been able to advocate for myself. I now know that you need to have a catheter changed if you’ve had sepsis, for example, so I asked for that. I also now know when sepsis is coming on. I would really like to raise awareness – amongst young people particularly – about sepsis and catheters. To help break the taboo about talking about it.
I feel that if we were to focus on my experiences of sepsis though, it should be the first one, because it was quite a classic case. I was someone who had been in hospital so much over the years and was very experienced with health issues and yet I still didn’t really know what sepsis was. This was back in 2020. In true me-fashion, being the opposite of a hypochondriac, I suddenly developed a 40 degree fever at home, and it felt like I had pulled my back, but I didn’t connect the two. And I thought, ‘Oh, I’m sure it’s fine.’ With hindsight it seems so stupid, but I just don’t make a fuss. Two days later I still had the 40 degree fever and what I now know was pyelonephritis – a kidney infection. That was why my back really hurt. At 4am I just thought, ‘This is not me.’ I wouldn’t call 111 or 999 unless it was a real emergency but I just knew at the time that I wasn’t right so I called 111. They wanted to send an ambulance and I was like, ‘Oh, don’t worry. I’m sure it’s fine. I’ll just go to GP in the morning.’ But they were insistent. And when I got to hospital I was told that if they’d actually let me refuse the ambulance I would have died in my sleep. Obviously now if I get a high fever I immediately call an ambulance or go to hospital, because I’m always at risk of sepsis. Anyway, I got rushed to hospital. I guess it was early in the morning and there was a queue. I’ve got terrible veins and I just remember a nurse taking my blood and he managed it, which is never normally possible – they usually need an ultrasound machine. And I remember him asking, ‘Are you confused?’ And I realised that I was. And now – again – I know when I’m confused, but I didn’t know then. It was just really helpful that he asked me outright whether I was. I obviously just wasn’t quite making sense. They then got the blood results back and suddenly they rushed me to resus and I had everyone around me – maybe eight people. They were so amazing. It sounds really cheesy, but it was a bit like a dance – everyone knew what to do. And they were being really nice. They were pumping me full of fentanyl, because I was in so much pain, and also full of fluids to keep my blood pressure stable and prevent my organs from failing.
But that’s when things went wrong. Obviously my life was saved – as I said I was told I was two hours away from dying. But unfortunately my lungs took on fluid. So then I was on oxygen for days. I feel lucky that I’ve never been in a coma and that I managed to avoid ending up in ICU. I ended up with AKI – an acute kidney injury though. I was apparently at stage two, where stage three is kidney failure and dialysis, and I came very close to dialysis. (I’ve subsequently had 8 AKI’s. When you’ve had one AKI it increases your chance of developing another.)
I was discharged a week later, but unfortunately still with sepsis, and two days later I had to go to my GP and she told me that I had been discharged with a CRP level of over 100. (C-reactive protein [CRP] levels are used as a marker of infection – anything over 50 being a cause for concern). So the GP sent me to the other hospital in Bristol and I was there for another week.
That was the start of post-sepsis syndrome for me. I had a kidney infection after that that didn’t go away for two years. Which meant that in the summer of 2021 I ended up with urosepsis again.
By June 2021 I was also in chemical menopause due to completely unrelated Adenomyosis and PMDD (premenstrual dysphoric disorder) and was awaiting a hysterectomy. This is relevant, because what happened was that I was bleeding but I just knew that I also had urosepsis. And I was in the ambulance and was taken to one hospital but because of the bleeding and chemical menopause they transferred me to the gynae unit of a different hospital, which lacked the facilities to treat sepsis. After five days of being incredibly unwell, they finally admitted that they were struggling to deal with what was going on. But they didn’t then transfer me to a urology ward. In their defence, I was also quite antibiotic-resistant. So it was just a mess. It was no one’s fault once I was in the gynae ward, it was just a complicated situation. I received lots of different IV antibiotics over the course of those three and a half weeks in hospital. But because since 2016 I’d had so many antibiotics, I have become quite antibiotic resistant, which is obviously dangerous. I understand, because it is confusing, but doctors tend to focus on the body in systemic ways – on individualised areas – so it’s very difficult if you’re presenting as a patient with more than one issue, which actually a lot of people do.
SRF:
Do you remember your reaction when you were diagnosed with sepsis, or was it just simply that you were dealing with so much in terms of the treatment for the various conditions that you were suffering from that you were slightly overwhelmed?
Amani:
I think each time I’ve had sepsis, I’ve got more scared. I know what it is now, and I know how dangerous it is, and I know how ill it can make you and how ill I was. The first time I had it I was scared, and I don’t get scared easily. Each time I’ve had it, I think the fear has become stronger, and I do have PTSD around my sepsis, which is partly why I haven’t been able to write about it yet. I can always go there talking-wise, but it feels different to have to sit down and write about it.
In February of 2024, I nearly died twice from sepsis. That was a lot. Realising how close I came and that I’m still here…
So now I’m way more on it. I take my obs more and if there is any sign of infection, most of the time I go straight to the GP and I normally get sent straight in for bloods and observation. I have lost count of the number of ambulance journeys I’ve made this year – there’s always a query in my case about sepsis. I’m definitely not out the other side – it’s probably not going to be the last time unfortunately, but I think I’m much more educated. I’m much more aware of what I need. I’ve got a much better understanding of the whole process around treating sepsis. I’m also more understanding of how complex it is to treat and how long it can take. I feel that that’s the power of education and awareness raising – through my learning, and through hearing other people’s stories, and through charities like yours. That’s why I’m so passionate about raising awareness – for everybody, because everyone always thinks they will be immune to sepsis. Not because they’re cocky or arrogant. It’s just that kind of thing we have as humans – that it won’t happen to you. When I talk about it – and I talk about it a lot – everyone’s like, ‘Would you just shut up about sepsis?’ But people have no idea how quickly it can hit. So I’m always, always talking to people about it. I think my particular passion is raising awareness amongst people like myself with chronic illness though. I’m immunocompromised but nobody had ever talked to me about sepsis and then I got it, and then I knew everything about it. It just blew my mind that after so many years of being immunocompromised, no one had ever told me that those were the signs to look out for with sepsis.
I do think that in the last four years there have definitely been positive changes and that sepsis awareness is a lot greater – whether it’s posters on the side of ambulances or in pharmacies or just the way I’m dealt with in the GP. They’re much more on it with sepsis than they were when I first experienced it, so I think that’s good. Plus the power of social media – which is really important in awareness-raising.
I think for me the wake-up call was the fact that I tried to refuse the ambulance and if they had let me do that I would have died.
SRF:
Your story is so shocking Amani, not least because we know how significant the health challenges you continue to experience are. Your desire to raise awareness of sepsis amongst the huge numbers of people – of every age – who use catheters is really important and valuable and is a subject that we would definitely like to return to in future. Thank you so much again for taking the time to talk to us.