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Leeny

Moving on from sepsis

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Hi, I'm new to the page and was hoping to chat with other survivors about moving on from having sepsis.

I recently spent two weeks in hospital after having severe cellulitis which spread to my lymph nodes and caused sepsis. It all happened in less than 24 hours, my temperature was 39.7, my blood pressure was low and my heart rate was 104. I was in alot of pain and the orthopaedic surgeon discussed removing tissue he suspected was dying off which could have resulted in the loss of my leg. Fortunately they were quick to diagnose and treat and antibiotic drips helped battle the infection. After 14 nights on 7 antibiotic drips a day, I was discharged with oral antibiotics for a week.

Since returning home I've struggled to get my head around how poorly I was and sometimes I feel like it didn't happen to me. I feel scared that it's going to happen again and that maybe next time I won't be as lucky. I have today been diagnosed with cellulitis again and have been placed back on doxycycline for 2 weeks but I'm so paranoid.

I know I'm so lucky compared to other stories I've read, but I just wanted to share my story and get any advice I can about moving on.

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Hi re moving on. I think tou need ro give yourself more time . You've been through a life threatening experience! You are right to be anxious about this second bout of cellulitis. Please remind whoever is treating you of what happened to you before. Noone really understands what triggers he sudden inflammatory response that leads to Sepsis. Some sort of tipping point . However the signs are always very clear. Temperature low or high,shaking, blood pressure dropping, dizziness ,heart rate rising feeling of impending doom ,something not right ,slurring speech ,feeling out of it . After i had sepsis following on from A chronic kidney infection due to a partially blocked ureter i ended up in hospital again with sepsis and back on drips for another week. Im not saying it will happen to you but i believe it is not uncommon to have tepeat seais. Basically your immune susyem has taken a real battering snd that all takes tume to repair. So you are vulnerable and you are right to be worried . I know that in itself is very tiring. For a long time after my second bout i took my blood pressure checked my urine and temperature at least three times a day i was so terrified the infection would come back. It hasnt . They fixed the underlying problem the blocked ureter. However over a year later i still suffer from fatigue . Have anxiety have to plan and be organised as i dont cope well with the unexpected have numb feet and hands and aches in my back and across my abdomen. I temind myself how lucky i was i got prompt treatment . I try to give my day balance and yes im moving on but slowly.

Its too early for you to let go what yourbody and mind has learned about. A near death experience. Continue to listen to your body and please be firm if people fob you off. You know your body best you live in it. Take care it will get better but timescales vary as we are all individuals . I hope this helps and i havent made ypu more anxious

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Hi Both,

I'm not a survivor (my background is in critical care nursing and working for the support side of the UKST) but I can appreciate how scarey it must be to think you may go down with sepsis again the next time you have an infection. Many survivors and their relatives contact me with such concerns.

 

Fiona you are right, a percentage of survivors (exact numbers aren't known yet), do have a weaker immune system for several years after their acute illness and either go down with more, usually milder episodes of sepsis for the same reason, or they catch every virus or bug going around their area. This affects both adults and children.There are plans to do some research on developing a vaccine for vulnerable post sepsis patients but this will take a while yet to yield any results.

What I would say Leeny, like Fiona, is know the signs of sepsis and if you start to feel really unwell, go down to get yourself checked out. If you can't get an appointment with a GP, then go to A&E, don't wait. If it does turn out to be a false alarm - then no harm done.

 

If either of you would find it helpful to talk to someone at the UKST, just phone our office on 0800 389 6255 and ask to be referred to the support team. There are several booklets and factsheets on our 'Survivor's Page' on our website which you might find useful.

 

I'm presently looking into how many patients experience Post Sepsis Syndrome (common long term physical and psychological problems experienced after sepsis eg. exhaustion, nightmares, anxiety, insomnia etc) if they were treated and nursed on a ward, rather than in Critical Care. Can I ask if you were both nursed on a ward and any other the affects sepsis has had on you? If you'd prefer to send me an email -I'm on libby@sepsistrust.org

Many thanks, 

Libby.

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Hi Leeny,

I too am a sepsis survivor and your story is very familiar to me through my own experiences and reading other stories on this forum.

Of course one expects to be delighted we have survived a near death experience but in my case it was not feeling 'delighted' that seemed to make me feel worse.

You've been through a very scarey episode and I doubt most folks can just move on after such an episode. Don't let these thoughts linger with you and please as Libby has said speak with someone.

A particular hard time for me was when people close to me thought well that's it you're better now, how lucky you are and get on with it. Quite possible it wasn't quite like that but in my experience it felt like it.

You're one tuff cookie beating sepsis and who knows if any of us will get it again but 2nd time around I'm sure we will be better informed of the signs and get help immediately. I've had many health issues post sepsis but fortunately I've been very lucky regarding infections, colds, bugs etc. Possibly the antibiotics you and I had administered have sent the badies packing.

 

Please look up post sepsis syndrome, you'll see you're not special :-) because your feelings are not your own. Share it with folks around you and they too can understand how debilitating post sepsis can be.

 

Take care,

 

Mark

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Thankyou all for your replies. It helps to know I'm not the only one feeling this way, and you're right I'm probably being hard on myself expecting to feel ok about it all because I survived.

My immune system isn't great at the moment with cold after cold and repeated cellulitis but I hope this will improve with time.

Can I ask you Fiona and Mark how do you deal with family and friends? I'm finding some are being overprotective of me, which is quite overwhelming. I know they mean well and just care but I need them to let me live too. And like you mentioned Mark on the flip side I have some that make me feel like I'm being dramatic and that I'm home so I'm clearly 'well enough'.

Libby I was on a ward in my own room for the first week. I spent the first 48 hours on hourly obs which were changed to 4 hourly for the remainder of my stay. I did find it frustrating at times as the hospital i was in was dangerously short staffed and there was a time the redness from the infection in my leg had spread dramatically and I told a nurse but it was 6 hours before I saw a Dr. Upon discharge I did have a number of nightmares but they have reduced significantly.

Thankyou again for the replies, I do appreciate it :-)

Leeny

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Hi Leeny, unfortunately in the weeks post hospital I hid myself away and didn't want any interaction. I'm very pleased that you let folks in and I hope that continues.

If I had my time again I would have been more informed about what I'd been through and more understanding of how sepsis can affect me post hospital. In other words exactly what you've done. Others are not so enlightened and I think this is why you are getting the reactions you describe. So enlighten them. Speak about sepsis or if you'd rather, print off some of the info on the site and give it to them. Once they are better informed I'd hope that their reactions to you are more 'measured'.

 

Good health,

 

Mark

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Hi Leeny, I too am a sepsis survivor , I can identify with what both you and mark have described, I spent time in intensive care before being transferred to a ward, I had severe septic shock and at the time I didn't really feel anything physically I just seemed to be exhausted. I am now 9 weeks post sepsis and have returned to work, I think about my experience every day, I can't seem to move on or get over it as people suggest. I know I am still recovering and I have learnt my limits as physically I am not as strong and get exhausted if I push myself to hard , this forum has been a great support and I wish you all the best for your continued recovery, I too worry about getting sepsis again and I was back in hospital a few weeks ago feeling pretty awful but thankfully it was just a mild infection x

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I too feel like it happened to some one else I found writing things down has helped as I was very confused and I was hallucinating , I still suffer from short term memory loss, but hopefully it will return

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I was hospitalised in February in Sheffield with severe sepsis. I spent 9 days in the High Dependancy Unit and was over 100 miles from home, so it was a very scary time. I had had recurrent UTIs since Christmas which culminated in this horrible illness.

 

On the whole I think I have recovered very well, have had plenty of rest as I was made redundant just before I was taken ill (really not my year!).....but in recent days I seem to be dwelling more and more on what happened, what could have happened, and just the general experience. I can't believe I came as close to death as I did. Apparently they didn't think I would make it at one point.

 

My question is, why do I seem to be thinking about it more and more...rather than less and less? Probably have too much time on my hands while my son is at school, as I haven't managed to find another job yet.

 

The other thing I need some clarification on is this.......I remember vividly thinking that every object in my HDU room was some sort of animal.....I remember realising myself at the time that this couldn't be so, but it was almost like I was lucid dreaming.....I knew it wasn't real but I couldn't make the animals go away?? Can anyone relate to this?

 

The other thing I remember is seeming to wake myself up by blurting out single words, and feeling a bit stupid in case anyone heard me! The Drs did tell me that at one point they couldn't get me to respond in sentences, only single words.....was this when I was blurting out words??? I realise nobody will know unless they were there, but these are the thoughts that are consuming my mind at the moment. I feel like I need to go back to the hospital and talk to someone who looked after me, to understand the exact timings and exactly what happened, to get closure. But I don't know why I need answers and closure, if that makes sense! Hope someone can help!

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Hi Alimac

 

I understand what you are saying and understand your thoughts on "going back". Sorry to hear about your Sepsis experience - distance from home must have been horrendously difficult

 

Having spent 3 months in ICU I get what you are saying. Recall, timing and dreams are all too real and those odd moments of consciousness nags at the reality of your dreams

 

It helped when I wrote my thoughts down. Wish I'd done more when it was vivid. Maybe that would help you too and I'm sure the hospital would welcome you back to discuss your memories. You can ask!

 

Get well soon 

 

Mark

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Thank you Mark. I may well ask if I can visit the hospital next time we are in Sheffield. We go fairly often, to stay with my friend.

 

3 months in ICU, wow, poor you o(

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Hi Alimac,

What you've described is all very normal for patients recovering from sepsis. About two thirds of survivors experience some long term physical or psychological problems - known collectively as Post Sepsis Syndrome (PSS). These include anxiety about what happened, vivid nightmares and flashbacks to when you were ill. Do you find something in particular seems to trigger these memories? Mark's suggestion about visiting the Critical Care Unit you were treated in may well help settle some of these thoughts because you'll be able to see where you were and what the objects actually were around you, so it may help distinguish reality from your flashbacks.  

 

We have a couple of booklets you can download from our website on the survivors page, called Sepsis:A Guide for Patients and Relatives and Sepsis: Survivor's Information which you may find helpful or if you'd like to have a chat about how things are, then call our office on 0800 389 6255 and ask to speak to the support team.

I hope this helps.

BW,

Libby.

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Hi Libby,

 

Thanks for your message. I'm not sure I have PSS, but maybe I just need to have closure on these things. I think I will make a request to the hospital and see if I can visit and speak to someone who treated me. I go up to Sheffield fairly often to stay with a friend, so can get up there fairly easily.

 

The weird thing is, I'm not having nightmares.... I find myself deliberately going over and over in my head, the timeline and the events of my stay, when I am awake. I have worked out that there is a 36-48 hour period which I cannot recollect at all....and this is obviously when I was at the most critical part of my illness. I feel like I NEED to know what happened then. I remember them saying my blood pressure was plummeting, and I remember there suddenly being lots of Drs/nurses by my bed, I have some memory of an arterial line being put into my wrist, but I can't remember much else until a couple of days later. My friends and relatives all said they realised something was very wrong when I stopped texting, as I had been keeping everyone informed when I was first admitted!

 

I have to run now to sort out my son, but I may well phone the office....I think I need to speak to someone!

 

Thank you!

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Hi ,, Alimac

We live on Skye and when I went down with sepsis I had to be flown to Paisley as it was snowing in Inverness , a 5 hour + drive away from our house - I suffered multiple organ failure , kidney [ I only have 1 , lungs and eventually heart failure ] - my wife had to arrange accomodation for the first 6 weeks until I was completely out of danger , had to take unpaid leave so no money was coming in [ I had to give up work by then due to a spinal problem ] .

I was in hospital for 3 months - and while on Life Support Machine or in a state of delirium I too had these vivid dreams of people turning into scarecrows , flower type things dancing above their beds - it's quite normal to suffer from this type of ' vivid terror dream ' apparently - but I was affected quite badly by them [ see my Terror Dream thread ] .

I went back to Paisley after two years to thank the Doctors , Nurses and Auxiliaries who had helped save my life , I was taken to the ICU room where I lay [ I was seperate from the rest due to my severe condition ] for nearly 3 weeks . It was quite small - two Nurses were in attendance 24 hours to keep me alive .

I went on a Saturday in July , there were very few Staff about and only one patient in the whole ICU Dept .- they were full when I fell ill in December 2012 [ perhaps it's a Winter thing ! ] . The two Nurses remembered ' the long haired man from Skye ' and were very pleased I'd made the effort to visit them .

I took with me bags and bags of coffee , tea and biscuits [ as was requested ] - most of the Staff in Ward 1 were either on their day off or on holiday , it was a very quiet time for them at The Royal Alexandra that particular weekend so I did wish I'd gone during the week .

Like everyone else I wondered ' when will it happen again ? ' but it's been three years now and I'm feeling like I've turned a corner though some days I get very tired .

You will recover , it just takes a bit of time .

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Hi Skyehammer....sorry I have only just seen your reply as I have posted again, as I have another UTI..arrrghhh.

 

Interesting to read what you went through...all very terrifying o(. Interesting to read about your weird dreams too. Hope you're still keeping well.

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Hello Leeny

 

Don't we all read different stories and think someone had a much worse time. That's true, but the outcome of Post Sepsis I read is that we all have some of the same problems.

 

Like you say, I have been told I am too hard on myself as I think I should be feeling as good as everyone says I look. As for people telling you to get over it, that's what you are trying to do,

but its only a very short time and its hard going back to work after septic shock.

 

Take care you are doing great by sharing with us how you feel.

 

Best wishes

Isabel

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Hi,I had sepsis a yr.ago this past april and I'm still having severe symptoms with my legs. and when I go out to eat I have to be careful because I'm still getting chocked.my name is tammy guin and I'm from raleigh,nc

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Hi Tammy - thanks for posting and sharing

 

From the posts and stories on here you will see the healing process can be a long journey and there is no quick fix. It's when looking back you will probably find how much you have actually improved - day by day, month by month - and its these small steps we all take on the road to recovery. I hope you have family and friends that can provide support and help when times are low but you have a whole "family" here who understand some of the struggles you are probably going through, post sepsis.

 

Come back and share more when you need and if you have any questions, I hope we can help

 

Mark

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I was hospitalised in February in Sheffield with severe sepsis. I spent 9 days in the High Dependancy Unit and was over 100 miles from home, so it was a very scary time. I had had recurrent UTIs since Christmas which culminated in this horrible illness.

 

On the whole I think I have recovered very well, have had plenty of rest as I was made redundant just before I was taken ill (really not my year!).....but in recent days I seem to be dwelling more and more on what happened, what could have happened, and just the general experience. I can't believe I came as close to death as I did. Apparently they didn't think I would make it at one point.

 

My question is, why do I seem to be thinking about it more and more...rather than less and less? Probably have too much time on my hands while my son is at school, as I haven't managed to find another job yet.

 

The other thing I need some clarification on is this.......I remember vividly thinking that every object in my HDU room was some sort of animal.....I remember realising myself at the time that this couldn't be so, but it was almost like I was lucid dreaming.....I knew it wasn't real but I couldn't make the animals go away?? Can anyone relate to this?

 

The other thing I remember is seeming to wake myself up by blurting out single words, and feeling a bit stupid in case anyone heard me! The Drs did tell me that at one point they couldn't get me to respond in sentences, only single words.....was this when I was blurting out words??? I realise nobody will know unless they were there, but these are the thoughts that are consuming my mind at the moment. I feel like I need to go back to the hospital and talk to someone who looked after me, to understand the exact timings and exactly what happened, to get closure. But I don't know why I need answers and closure, if that makes sense! Hope someone can help!

 

  I went through the usual procedure , ICU to HDU then to a room of my own in Ward 1 [ Royal Alexandra , Paisley ] - I was so convinced the sepsis had happened because I had been kidnapped and sexually assaulted [ my vivid terror dreams ] I went and told my Consultant ! He advised me to go to the police when I got home - then the following day another Doctor came to see me and asked if there was a chance I had dreamed all this - I went through a timeline of recent events , I could remember Bonfire Night [ my sepsis occured in December ] and realised it must have all been a horrible dream - but to be so convinced it had been reality while being out of ICU and HDU it only goes to show how ' realistic ' these terror / fever dreams can be .

 

 In November 2016 I was treated for sepsis again - this time as a result of pancreatitis - however it was a walk in the park compared to 2012/2013 - just felt normal but had to have 4 doses of Tazocin each day for 9 days . No side effects I can think of .

 Septic Shock and sepsis are two different things I have discovered .

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