Update! The new “Six Signs of Sepsis” card from UK Sepsis Trust:
I mentioned “sepsis” almost in passing in my previous blog post, “I used to be a Speech and Language Therapist“. As I found to my cost in late 2013, it is a very insidious and dangerous condition.
It is down to a combination of luck and the fantastic NHS service at the Royal Victoria Infirmary (RVI) in Newcastle that I am alive.
- Thanks to Mr Plusa’s surgical team, for operating so promptly and starting to remove the enormous abscess inside me. Three operations later they had finished their work.
- Thanks also, I think (I was rather doo-lally with the effects of sepsis at the time) to Dr Gascoigne, Deputy Medical Director – for recognising after my first operation that I had sepsis and needed a massive dose of antibiotics and also for then whisking me away to the High Dependency Unit.
- By then my lungs were more than half full with water, I had had a heart attack, was in kidney failure and was plagued by recurring TIAs (Transient Ischaemic Attacks) or “mini strokes”. Sepsis is not a stroll in the park!
- Thanks also to Dr Jane Skinner, Cardiologist, for her exemplary care to this day.
- Thanks also to the wonderful hospital nurses and to the excellent District Nurses who looked after me for the following three months.
- The mad Chinaman and a couple of distinctly sadistic nurses are a story for another time – I will leave them out for now!
(Thank goodness for the Mad Chinaman – that was getting to sound a bit like an Oscars acceptance speech.)
Dr Gascoigne explained to me later, “You have no broken bones but, in terms of the shock to your body, think of it as being hit repeatedly by a double decker bus!” He warned me that it would take a couple of years to recover – I have three months to go so I am probably nearly as good now as I am going to get!
You think it’s the flu – but it’s not
We all know not to go to the Doctor when we think we have got the flu. There are signs all over GP surgeries telling you just to go to bed and take painkillers because antibiotics cannot help. Sepsis is not as common as the flu, so if you think you have got the flu, you probably have got the flu.
Unfortunately, if you have got sepsis, then you might not get out of bed again. If the flu seems to get worse rather than better after a few days, even if you are up and staggering about, as I was, it might be worth considering that it is not “just the flu”.
The trouble is, by then your brain is a bit addled by sepsis. If others think you should see the Doctor, just listen to them and do it.
With me, my partner had had the flu but I did not get it. I just seemed to go straight into a “getting over the flu” state of messed-up being. It seemed a bit odd but I was just glad that I has missed out on having the flu proper.
Others think you are “a bit spaced-out”
I was already in quite a lot of pain from a huge abscess, although I did not know that was what it was, and thought I had had a weird flu-thing for a few days when I went for a job interview on Tuesday 15th October. This was for a lovely, lovely Band 5 Speech and Language Therapy Post.
My reasoning for still attending the interview, even though I felt absolutely rubbish, was that it was far too good a chance to miss – and if I did not go then I certainly stood no chance of getting it. So I dosed myself up with even more flu medication and blathered nonsensically through the interview, half the time wondering what on earth they were talking about.
Needless to say, I did not get the job. Both interviewers had known me for many years and part of the feedback was, “We were a bit worried about you – you seemed a bit spaced-out.” I put it down to the weird-flu-thing. The “weird-flu-thing” that was actually sepsis that was addling my brain.
Deep chills: another week of not “post flu”
Most of the following week I was feeling rough but, according to my diary, it seems that I was just “getting on with things”. I know that I was in more and more pain but I do not want to go into the whole “abscess thing” because:
- sepsis is due to an infection and it does not necessarily have anything to do with having an abscess, so focussing on that is a bit of a distraction
- OK if you really want to know, let’s get this out of the way, it was a massive horseshoe ischioanal abscess that was misdiagnosed by my GP as a haemorrhoid (I told her she was wrong!) and the “boils on the bum” in the song are inspired by what felt like several satsumas buried in my buttocks
For a week, I am so cold. My skin temperature feels normal but inside it is like there is a block of ice and I am shivering so much with the cold. I am so cold inside that sometimes I cannot sleep, even though I am so tired. I keep thinking about the scene in “Catch 22” where Snowden is dying and says over and over, “So cold. I am so cold.” But Snowden’s guts are spilling out. My guts are not spilling out so it can’t be the same. But it is.
24 October, Thursday, nine days after the disastrous interview my diary says, “Excruciating pain!” and I finally go to see my GP at 10:00. Who misdiagnoses “a haemorrhoid” (I told her she was wrong, but would she listen? No!)
I learn later that “deep chills” are symptomatic of an anal abscess.
I told her about the “satsumas” in my buttocks and she said that you could often feel haemorrhoids from the outside. This made no sense whatsoever anatomically but I just thought, “Haemorrhoid cream is not going to work but, since you insist, I will try it. I have no doubt that I will back next week and you can have another go at at trying to work out what on earth is going on here!”
I had no idea that I was so close to death that there might not be a “next week”.
I go to bed when I get home from seeing the GP, unaccountably so tired. Wake up with horrendously painful cramp in my feet, ankles and legs for two hours non-stop. This, I learn later, is due to septicaemia: blood poisoning due to the abscess has affected the electrolytes in my blood.
My diary for the next few days is just a litany of pain, pain-killers, and sleep. Every day I have more difficulty walking, just a few steps are so tiring.
I notice that my urine is increasingly dark. I suppose that I must be dehydrated for some reason and I need to drink more water, so I do, but it doesn’t seem to help. I keep drinking more water. I do not know that the problem is not lack of water but that my kidney are failing due to sepsis.
By the time I eventually get to hospital my lungs are more than half full with water. Maybe that was where it was all going? Or maybe the water in the lungs was due heart failure caused by sepsis? I do not know.
You know that you are dying
Sunday 27 October, resting on the stairs after taking two steps up, another step, then rest again, I think, “I am dying. I don’t know what this is, but I am dying”.
This knowledge, not a rational evaluation, not a suspicion, it is so had to describe, just “this knowledge that you are dying”.
I have since learned that this is one of the six signs of sepsis. Well, to be accurate, the official wording is, “I feel that I might die”. I don’t know if they are pulling their punches on that one but there was no “might” about it as far as I was concerned.
Does that sound scary? Everyone I have have talked to about this thinks it sounds scary. Believe me, it is not scary – it would be a lot better if it was scary. If it was scary there would be a sense of urgency and it would have you dialling 999 and getting help before you actually did die.
I can remember resting on the bannister rail and thinking, “Is this the sort of thing you hear about when people are lost in the snow and they mustn’t go to sleep or they will die of exposure? You could just so easily go to sleep. Is this what they feel like? That they know that they are dying, so they feel that they might as well go to sleep? Because it won’t make any difference, they will die anyway.”
Instead of ringing 999 I am clinging to the bannister rail thinking that sort of stuff.
Then I think, “How I feel now reminds me so very much of when I was on the phone to my mum when she lived in North Wales, and she sounded so ill that I called an ambulance for her, and she had septicaemia. I wonder if I have got septicaemia?”
Did I call 999? No. Instead, I thought, “I must get to see my GP again tomorrow!”
Why? At least partly because I thought, “They are going to think I am bonkers if I phone 999 and say, ‘I don’t know what is wrong with me but I know that I am dying’. They will ask if I have seen my GP and I will have to say, ‘Yes, she thinks I have got haemorrhoids – but I know she is wrong!’. Then they are definitely going to think I am bonkers and will just tell me to see my GP again.”.
Finally, just in time
So, you know when you start phoning your GP as early as possible and it is engaged and you do automatic re-dial for 30 minutes and you finally get through and all the appointments have gone? That.
I pleaded that I must see a GP that day, “I know I am very ill, I don’t know what is wrong with me, I am in so much pain!”
“Would you like to talk to a doctor?” asks the receptionist. “Yes!” say I, thinking she means “now”.
“OK – the Doctor will phone you back”.
What a relief! I think she means, “Now”. But she doesn’t.
I phone the GP again after 30 minutes: “Yes, the Doctor will phone you back. The Doctor knows that you want to speak to her.”
Repeat. Sleep. Repeat. Sleep. etc.
The receptionist, curt at the best of times, is getting very annoyed with me, but she never explains, “The Doctor will not be phoning you back until late this afternoon.” Had she done so, I was in such a state I would have called 999, OK, maybe 111, straight away and bugger the consequences if they thought I was bonkers!
About 4:00 the GP, a different one, phones me and quickly realises something is very wrong. She asks me if I can get a lift to the surgery and she will see me as soon as I arrive, that I will not have to wait.
Are you drunk? No, I’ve got sepsis, you bloody idiot!
By now I am in the “drunk” stage of sepsis. I am in excruciating pain, crying some of the time, or waving my walking stick in the air and cracking jokes.
I arrive at the surgery and there is a surly receptionist-bouncer hovering next to the computer screen where I have just “logged in”. She grunts at me: “Hour and twenty-five wait!”, and head-points me towards the waiting area. I stand staring at her, confused, and eventually say, “I don’t think so!” I am still working out whether I can manage to flip up the walking stick, grab the bottom of it and hit her round the head with the handle before I fall over, when the GP comes out to get me.
The GP does a cursory examination and cottons on straight away that I am in serious trouble, picks up the phone and tells Jeff to take me straight to “Admissions” at the RVI where they will be expecting me. Not to go to A&E because “you haven’t got time, it will take too long”.
She didn’t say, “Because you might die before they see you”, so I went home first to get a toothbrush, pack a “hospital overnight bag” and feed the dog. When I think about it now, that makes me shudder! It’s like, once you know that you are “being looked after” that you are safe. How stupid of me! Then again, I had sepsis addling my brain so I was not thinking sensibly.
I can remember being pushed along by a porter in one of those weird hospital armchairs with wheels, waving my walking stick in the air and announcing loudly to a packed waiting room, “I do not give my consent to anyone examining or sticking anything up my backside – unless you knock me out first, and then you can do whatever you like!”
And then they saved my life!
How to save more lives!
Highly recommended for life-saving information:
I was discharged from the RVI three weeks later on 14 November. Alive but very feeble, confused and not at all able to look after myself. I am so thankful to Pauline Smith and Mike Moore for taking me into their home and looking after me.
On New Year’s Eve, 31 Dec 2013, cuddled up to my little dog who is so afraid of fireworks, I decided to write a serious song about Sepsis. “Serious” is not exactly how it turned out.
On New Year’s Day I performed it at the Strings Attached Club at The Millstone, South Gosforth. Whatever you think of the song, I am inordinately pleased at that achievement!
I wondered if I could do something a bit more useful than just write a silly song, so I found and put together the images to make a slide-show video. That is the one on YouTube that you see at the top of this post. Ron “Sepsis 6” Daniels from the UK Sepsis Trust spotted the video when I posted a link to it on Twitter and I emailed him.
I promised Ron that I would to do my “Sepsis Story” for the UK Sepsis Trust website – he said, “when you are ready”. I promised again to do it, in support the “Sepsis Toolkit” as part of NHS Change Day.
I did not think it would take so long for me to “be ready”. This is a start anyway. I foresee some “copy and paste” coming up.
Please visit the The UK Sepsis Trust web site to learn more and, for a bit of light relief, there is always the video at the top of this post.
19 July 2015