I Survived Sepsis due to Invasive Group A Strep - AMA

[NewNameWhoDis3]

Last December, when it seemed like every parent in the UK (me included) was on high alert for our children getting scarlet fever, or worse, the invasive kind that we read about in the papers...I got it instead.

I didn't even realise it was possible, but it damn near killed me. Now that I'm feeling stronger, I thought I'd start a thread to raise awareness.

I had very few symptoms of sepsis, and by the time it was diagnosed, I was almost in septic shock, where organs start shutting down.

All of this happened over the Christmas holidays/strike days; it wasn't a great time to be gravely ill.

During my 3 weeks in hospital, for 2 of them I was mostly unconscious or otherwise aware of how precarious my condition was, which was both a blessing, but also very confusing and has left me with large gaps in memory which is distressing.

I've been home a few weeks now and am much stronger, but it's relative. I can't walk far, am often breathless and can't actually do much without 'paying for it' the next day in terms of greater pain than I'm already in. It will last for months, and despite friends telling me I look great, I feel like hell most of the time. I'm not sure what my job prospects will be after this.

Apparently sepsis kills 1/3 of people who get it; roughly 120 people a day in the UK die of it. Invasive Group A Strep is rare, but unlike what the papers kept reporting, anyone (not just children) can get it. Here's a link to signs/symptoms in both adults and children - https://sepsistrust.org/about/about-sepsis/

If you've read this far, go ahead, ask me anything. I have loads of time! Otherwise, please acquaint yourself with the symptoms. I went from happy and well to fighting for my life within about 20 hours.

My cousin has contracted Strep A and sadly antibiotics not working - she was told only ch can get it too ☘️👍🏿

I’m sorry you’ve been through such an awful time and hoping you’ll make a full recovery 👍🏿☘️

Gosh poor you.
I am pleased you are on the mend and hopefully things will continue to improve

what symptoms did you get?

What did having sepsis feel like?

I had this too many years ago and it sounds like a similar experience! All I can say is “pace yourself” and don’t try to do too much too soon. I’m still here over 30 years later.

Oh no I'm so sorry - I know the doctors tried lots of different antibiotics; they seemed to change every few days. Some worked better than others - don't give up hope xx

Thank you ❤

OMG that sounds dreadful - and thoughts with you and your family too @eveoha

OP it seems to have happened really fast! At what point (in hindsight) do you (or the people around you) think you could have realised what was going on? And when was it actually realised?

Thank you very much ❤

So the two (of the six most common) symptoms I had were extreme shivering initially, followed by muscle pain several hours later, and feeling like I was going to die.

Initially my husband and I thought I had norovirus; I went from happy and alert to projectile vomiting for hours on end. During this time my temperature spiked, getting up to 40.4. I thought the thermometer was broken. My temp came down, but by the wee hours my abdomen had swollen and gone rigid. I couldn't get comfortable and had a feeling inside that something was going to happen. We went to A&E - I was worried I'd be told off for timewasting - my husband expected it to be my appendix.

Several hours later, after having only been seen by a nurse, my pain level increased again and I told the nurse I felt I was going to die. I was coherent, polite, not crying etc and ironically I think these things worked against me as judging by how ill I was, I should've been none of those things! but he did bring doctors round, who thank God got me in for a CT scan quickly. It showed my abdomen literally full of infection, and from there things moved very fast.

We were told that another hour's delay would've led to a different outcome. I'm not a pushy person but thank God for that little voice inside that made me speak up - I literally had a recurring thought, Something bad is going to happen if I don't get help now.

Thank you for your post and wishing you all the very best for your continued recovery xx

Dh is a very experienced paramedic and always says if someone I'll but calm tells you they think they are dying then believe them. So pleased you survived.

It's an interesting question, and one that's hard to answer. Before the surgery I had to remove pus and infection from my abdomen, I felt like I was going to burst - literally that my torso would explode. It was tender and every time I moved it was agony.

After the op, which obviously jostled all my organs around, the pain I felt was more from that - in a way similar to CSection recovery, where I felt like my insides were going to fall out. Nothing felt stable inside; when I changed position, everything shifted. I had a stabbing pain around my gallbladder; different organs were inflamed and irritated but it in particular seemed painful. Overall, everything inside felt like it was being stabbed - a very acute, sharp, constant pain. For the first week or two, it was so intense that I kept my eyes shut, hoping to either fall asleep, or pass out.

My breathing capacity was badly affected so I was on oxygen for a while; I couldn't inhale very deeply, even when the tubes were out. Despite being on pain medication, the thing I dreaded was nurses asking me to roll to one side (to prevent bedsores, for a bed bath, to change dressings etc) as then I couldn't breathe at all until I was on my back again. The nurses I had at one point said it was in my head and weren't especially understanding. Whether it was mental or physical, I couldn't breathe deeply enough to get enough air in, and having to keep myself from hyperventilating while they worked on me was pretty awful.

The pain changed over the weeks I was in hospital, and since discharge. Technically the infection is gone, but my organs are 'inflamed and irritated' and as such the stabbing pain is still common. So is muscle and joint pain, and now I'm having chest pains, owing I guess to the fact my heart is swollen. My legs feel heavy and I walk a bit like Frankenstein's monster. I've accepted it, though feel pretty useless most days. Previously, I was a very 'busy' person...now, not so much.

How long until you think you will feel "normal" again?

I'm so sorry you went through it, but it helps immensely reading that people got through it, so thank you for posting. I've read that people who've had sepsis are more prone to it going forward, and that quite a high percentage wind up being rehospitalised. It's all fairly terrifying, so I try to pace myself both in terms of what I do physically, and also how much I allow myself to think about it or read about it on any given day.

Right now, I have a good routine at home. I'm able to see friends a couple of times a week, I potter, and also catch up on box sets and books. The house is not as clean as I'd like but doctors say to avoid stress, so I'm choosing not to notice 🙃

i don't have a question but just to try and reassure you, I had sepsis 18months ago now and am back to the old me. Recovery was slow and it was a big shock going from a healthy person to someone who could barely stand up long enough to shower and I found that the effect on my mental health was quite tough but it did get better. Wishing you a speedy recovery and be kind to yourself in the meantime.

And just on this point I've read that people who've had sepsis are more prone to it going forward, and that quite a high percentage wind up being rehospitalised. I feel you! I got an infection maybe 6 months after I had sepsis and was terrified it would progress to sepsis. I remember just bawling my eyes out at the Dr about what was a minor infection . I still get a little nervy when I feel unwell, especially if I feel too hot, I start to go into a bit of a panic spiral thinking shit do I have a fever, do I have sepsis again? I think that's normal though and is lessening with time.

Thank you for this, and your other message - early days at home were very like this; I had a slight temperature and remember shutting myself in the bathroom weeping, convinced I'd have to go back to hospital. And on another day, weeping because I realised that at least in hospital, I wasn't 'in charge' of keeping myself alive, and that maybe it would be a comfort to go back in again. It's all been an absolute mental beating. Especially since there will never be answers regarding where I caught it, or how the bacteria got in.

I'm so glad to hear you're doing well, and that you feel yourself again. In a way I feel I've now got this sadness about me...I guess it's survivor's guilt? I hope the intensity fades a little as literally every day I have a cry over how different things would be for my children and husband had I not pulled through, and how sad it is for the families of people who didn't.

It did happen really quickly. To the best of my recollection, I started vomiting around 12:30pm, got to A&E around 4am the next day, was seen by a doctor around 9am and soon thereafter was in emergency surgery. I was transferred after that to a specialty hospital.

TBH I'm not sure we could have recognised it any more quickly than we did - I felt rough, but symptoms were in line with norovirus, and it was a reasonable guess as it was going around our area. The real delay happened at A&E where it was hours between being triaged and actually being seen by a doctor. After having my temperature taken and being given paracetamol, I was left on my own, with nurses literally looking into my bay but not actually stopping to see how I was feeling. To be fair I remember there were a couple of car accidents coming in; I'm not suggesting anyone was being negligent, it's just a function of how things go, and how you have to advocate for your own care and not be afraid of demanding help if you get that 'I'm about to die' feeling. Had I not flagged down a nurse, I'd have kept waiting beyond the point of no return, I'm convinced.

Thank you. Wouldn't wish it on my worst enemy. It's incomprehensible that sepsis and iGAS aren't more widely talked about. The advice is, if at the hospital with any of the signs, if you feel unsure, you're to ask doctors 'could this be sepsis?' as it's so often overlooked/hard to diagnose.

That's very reassuring. It was such a strange feeling of calm, combined with impending doom, and hoping people would believe me despite not being emotional about it.

I really don't know. Doctors have said it'll be at least six months where pain will be the norm. I'm trying hard to take it easy, but it's not natural to me...my whole life I've been busy, and in a way I feel like I need to justify being home, like people will think I'm faking unless I can show/report progress. But it doesn't work that way. Some days are horrendous with lots of pain, others I feel relatively normal (what passes for normal) then there's today which started off awful, got better and now I'm having actual chest pains...damage was done to my heart during all this so now I'm facing a doctor's appointment tomorrow, maybe a trip to the hospital for tests - all of which I'm not mentally ready for.

Mentally I feel guilty to have survived. I'm not sure I'm capable of doing any of this gracefully or well. I don't want to be a mess in front of my children but some days (like today) it's so hard to just not cry all day for all that's been lost, the pain, the fear, the disturbing half-memories of things that happened in the hospital - what I'd like more than knowing when the physical pain will stop, is knowing when the anxiety will go away. Like @leithreas said, the mental toll it's taken is enormous. I would very much love to be my old self 😕

You are so brave to have gone through all of that OP, take your time with healing and recovery. You'll get there soon. Thank you for answering

@NewNameWhoDis3 that all sounds so hard - sounds like you have a lot in common with people who have been hospitalised with covid? I do wish you the very best with your (carefully paced!) recovery.

I'm going to have another look at that sepsis page you linked upthread. I think asking 'could it be sepsis'? is great advice.

I am so sorry to hear of how ill you were and so pleased you are now at home recovering. Thank you for raising awareness of this terrible illness

Thank you - that's what I was hoping, that people would have a look. Sepsis is more common than people realise, and can kill very quickly, so it's just bizarre that we aren't all educated on its symptoms the way we are other health issues. One of the most common causes is a UTI 😳Granted, the reason I got it was from invasive group A strep, which is rare, but again it is shocking that none of the literature any of us parents were given in Nov/Dec about it mentioned infections in adults.