Post Sepsis Syndrome: Hi I am Phil and in January... - ICUsteps

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Post Sepsis Syndrome

Phil112
Phil112
11 Replies

Hi I am Phil and in January 2015 I was struck down with Pneumonia and was in hospital for nine days. My longer stay was thankfully down to a Dr who was not happy with my blood tests and therefore kept me in until they improved. About a month later and without any warning I was fortunately found by my wife in bed and taken to the QMC Nottingham Critical Care Unit as the paramedics had agreed it was Sepsis. The point of my note is this. I spent 11 days at the QMC ITU and then transferred to the City Hospital ICU and spent a total of four and a half weeks in ITU and then Renal Unit. I have no recollection of being found or my stay in the QMC but when I was in The City I had such incredibly crystal clear dreams that I could even write down every one of them a year on. I now feel as if I was put through a tunnel scanner and came out the other end a different person. I feel my personality has changed. I am still weepy at times and always feeling down most of the time. I know I think differently and get upset when certain storylines occur on TV Soaps to such a degree I am now considering putting headphones on and listen to music as I do not want to deprive my wife her enjoyment of TV. I still have flashbacks and my throat is still sore after all this time from the tracheotomy which was in place. Does anyone else out there feel the same. I feel ad if I will never get better. With other illnesses they happen and you recover but Sepsis and being in what was an induced coma at times seems to make me feel different. I have no local group to turn to and only my Psychologist to talk to. She tells me that I have survived a near death experience and nearly died. She says that I am still recovering and possibly have Post Sepsis syndrome or PTSD. And that I am being hard on myself and need time. Does anyone else feel the same or have experienced similar. It is continually putting me in a deep depression when I think about it.

Phil

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LucyT

Hi Phil,

I had sepsis with multi organ failure in 2008 and also had a trachi. I went back to work too soon afterwards and in 2009 I was then diagnosed with Chronic Fatigue Syndrome and PTSD. My flashbacks were vivid and happened at times that took me by surprise. One day we went kitchen shopping and I had to get out of the shop quickly because the white kitchen and bright lights sent me into a spin!

I found that writing down the dreams really helped me, it was really difficult at the times and I was very tearful doing it. I did get some closure especially after sitting down with family and going through it. They let me know what actually happened which was quite often different from what I thought had happened! You need to get closure and work through the flashbacks. I went to a psychiatrist for 4 years which also really helped me come to terms with what happened.

8 years down stream I get the occasional moment when I have issues (I'm not good going into hospitals and have the odd anxiety attack when in a hospital) but generally I'm in a good place. After going through what I went through I think I've changed for the better but it has taken me a long time to come to terms with my journey.

Keep strong, it does get easier and the flashbacks do fade if you get treatment. Flashbacks are due to unprocessed information in the brain.

There are certain things that you learn to live with and my crooked tongue is one of them (after the ventilator tube!).

I wish you lots of luck in your recovery. You are not alone, there are quite a few of us out there who have had very similar experiences. There is light at the end of the tunnel, you will get there, but it won't happen over night it is a long process.

Best wishes,

Lucy

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angelrock

I have had an assortment of emotions from feeling happy to being suicidal, even now eighteen months later. Please be patient and very kind and compassionate with yourself.

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AnthonyS

Hi Phil.

......post sepsis and multiple organ failure

I couldn't have expressed it better than Lucy, particularly freaking out in the kitchen shop. Lights and white tiles were a major feature of my nightmares/dreams too. I'm lucky that after 2 years it has almost all gone. I'm still emotional at times but, hey, that's not such a bad thing. We are all lucky to still be here, so of course we are emotional. I am an oldish (75) guy so marvel that they even tried so hard to keep me alive!

I was lucky that the ICU staff kept a 'diary' filled in nightly by different nurses. As well as 'telling me' what had gone on that day, each page ends on an upbeat note with a smiley and personal good wishes. Now THAT does still have me tearful!

I, too found it helpful to write out my nightmare visions almost as soon as I got home (still tube fed for another 4 months after that!). My ICU held 6 month and 12 month individual reviews as part of an ongoing research project. I took my 'dream writing' in for them - and it's now on the ICU staff notice board! Perhaps the only other thing left is a lack of confidence compared to before, for example I find large social events difficult.

Stick with it, it will improve. We all understand and support you.

Tony S

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Hidden
Hidden

I'm think I'm having an issue with post sepsis syndrome.

I was sent to hospital in April with what they thought was a UTI. I had a catheter inserted (very painful), was given IV antibiotics and pain relief and had bloods taken. After about 4 hours of waiting on a bed in A&E my temp shot up and i was moved to resus.

It wasn't until the next day that they said it was Sepsis. So for 4 days they were looking for and abscess in the urinary tract, but couldn't find anything. I was discharged on day 4 with a bag of antibiotics and that was it.

I was not getting any better so i visited my GP who said the abdominal pains I was having were to be expected and was sent home again. A week after being discharged is was still no better and declining again, my wife took me to A&E and I was given more IV antibiotics and sent home.... i felt better for 2 days, but then declined yet again. A visit to a different GP on day 12, and he was more sympathetic and realized that the pains were abdominal and not urinal and prescribed antibiotics for an intra-abdominal abcess. After about 4 more weeks, a CT scan and a Cystoscopy I finally got to see the urologist and as we thought they confirmed no issues in the urinary tract, BUT there were diverticula present, which probably caused the Sepsis (but not confirmed)......

so now we are 8 months on and I finally got a referral to a gastroenterologist, but I am now feeling so tired, lack of concentration, not sleeping well, no appetite, run down and low! I'm not sure how to cope/deal with this.

Any advice would be gratefully received!

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bunnyrabbit1234

hi phil my name is mick . This is the first time I have heard any one talk about there emotions like that and I could not agree more . I spent 17 days in a coma and a total of 6 and 1/2 weeks in hospital . I too have come home a different person , I don't like myself very much any more . I get angry, fed up and tire easily .

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Jerry_Yen

Hi Phil,

I hope you are all better now. Having gone through what we did is so traumatic that there has to be some kind of affect on your mind. I would feel very similar to what you described and every time I felt that way, I would immediately find something which I enjoyed doing to keep me busy. But night time was the worst for me. I can still remember waking up from the coma with a high fever, hands bound, intubated and not knowing where I was. I think about the months of dialysis and the doctor at the rehabilitation hospital who belittled and chastised me because I wasn't progressing at the rate he thought I should. I think about the months of dizziness after being able to stand up. I think about not eating for 6 weeks and then being forced to eat (literally). I recollect all this and more and yet, you are right, there is no support group or anyone (who I know) to talk to who has gone through this ordeal...and yes, it is frustrating. But at the end...we made it, let's enjoy the time we have and try not to dwell on the past! Take care and god bless!!

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Juleswilbur

Hello,

I have had a similar experience. In January my partner found me collapsed in the hall it was at night and he was awoken by me making a strange noise when he found me I was fitting and unresponsive. I was rushed to Edinburgh Royal infirmary where I was diagnosed with Type A flu double peomia and sepsis. I was on a ventilator for over 2 weeks in a coma which they had difficulty waking me up from. I was then given a traciotomy which was in for 3 more weeks then I left ICU when the traci was removed. I developed a Dvt which had traveled to my groin by the time they checked. I spent a total of 8 weeks in hospital.

I can't remember anything about that night nor the days leading up to my collapse. We had just returned from a trip to Rome for my birthday and I only have a very vague recollection of our time there. I know now I was ill in Rome but I just thought it was a common cold. I had terrible nightmares/hallucinations whilst unconscious which are still very vivid and my only memory of my time before I slipped into the coma. When I woke up I thought a nurse was trying to hurt me and I couldn't tell anyone because I was on the ventilator. I couldn't write as I had lost all motor skills due to my time in the coma and the drugs they have you on. I had to learn how to walk again and because my leg swelled so badly from the Dvt I couldn't walk unaided and had two bad falls whilst in hospital.

I had long hair past my shoulders but shortly after getting home it started to fall out and break off so I lost almost all my hair and my nails are so soft they split to the quick. My consultant said it was a miracle I survived as any one of the conditions I was admitted with could have killed me. He said it can take at least a year before I start to feel better. I totally understand how you feel I used to hide my traci scars and the vivid dreams I had still trouble me I almost died my partner was told that if he not found me when he did I wouldn't have made it. I wonder if I did die and the nightmare I was in was hell and sometimes I think that I am still in the coma and this existence is a dream. I worry that I will get sepsis again. I am always so tired everything is an effort but I hide most of that from my partner as I don't want him to worry.

I hope you start to feel better soon

Julie

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Phil112
Phil112
in reply to Juleswilbur

I am still having problems. Most are fighting Capita and DWP. CAPITA Assessor said I was on moderate pain relief.Oromorph and Zomorph are by no means MODERATE. I at Appeal Court again in September. I still suffer flashbacks and don't want to mix with people. My Psychiatrist says I am lonely but by choice. I still remember every dream as if it was yesterday and am still writing them down. I feel like all the bits in my brain were thrown up in the air and landed in the wrong places. I know I am no longer the same person Post Sepsis. Last year l had Acute Pancreatitis followed by Acute Respiratory Failure. Diagnosed now with COPD and Sleep Apnoea. I have to wear a CCAP Air Machine Face mask all night for the times I stop breathing. I just wonder when it will all end. I do know my demise will not be from natural causes but by my own hands. I really have had enough. I am 67 and feel 107. I just don't enjoy life anymore. That's what SEPSIS does

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Juleswilbur
Juleswilbur
in reply to Phil112

Please do not listen to the stupid accessor from DWP I don't know zomorph but I was on oromoroph for three years before the pain clinic changed my pain meds. A DWP nurse or doctor can't decide in a hour long interview what your level of chronic pain is that has to be assertained by a pain specialist Do you have a pain team you could ask your doctor to refer you to? I live in Scotland so maybe it's different in England but I as diagnosed with Chronic pain before I got sepsis.

Please believe me I know how you feel as about your head I forget so much and what I don't forget I get confused. I can't write my sepsis nightmares down because although I can remember then vividly at some points the more I try to remember the more they don't make sense and scare me too.

Please discuss your feelings of self harm with someone who you trust your doctor a friend anyone who can maybe help and support you. Please believe me suicide is not the answer to this. I say this as the mother to a beautiful troubled young man who took his life 7 years ago when he was 21. Losing my son is the most painful thing I have ever had to endure if you have family you will destroy them. You are in a dark place and can see no way out I understand I have been there a few times in the past few years but you survived sepsis for a reason we all did. The consultant who treated me in hospital said it was a miracle I survived as any one of the three things I had was enough to kill me. I had type A flu (the worst type seemingly I just thought flu was flu) double pneumonia and advanced sepsis. When my partner found me I was already slipping in and out of consciousness and fitting. I can remember nothing in the lead up to my collapse or of the next two and a half weeks that I was in a coma. At one point the doctors told my mother to call the family as they couldn't wake me up and I was slipping away but I came out the other side. It wasn't my time and it wasn't yours. Maybe you should tell your psychiatrist everything however difficult it may be I am 49 and like you most days I feel like 109. I am not the same person I was before this happened and I struggle with the effects of my 8 weeks in hospital every day. The consultant I saw was so good and he said a lot of the things I was going through would get better over time as it can take over a year to recover from sepsis and for our bodies to rid itself of the effect of the strong drugs they had to use in hospital to keep us alive. Appeal the decision of the DWP have you got a support worker who could with you to the appeal? If not perhaps a family member or friend or neighbour who can support you when you go? Make sure that your mental health is included in any report to the DWP. You need to talk to your psychiatrist about your suicidal thoughts I know it is a difficult thing to talk about but he or she needs to know how bad you are feeling. Be honest with them and yourself

I am so sorry that you feel so bad that you think suicide is a solution it never is. Please Phil don't give up im sure you haven't made it too 67 without having to overcome adversity or difficult times this is just another time it too will pass. I have questioned why I didn't die as these last few months since I got out of hospital have been very difficult I joke and say I must have been a very bad person in a previous life. I just hope things will change again.

I really hope you go and seek help and you talk about your true feelings with someone who can help you please don't hurt yourself Phil if you do and are successful you will only be transferring all you feel onto the people who love you and believe me that pain is cataclysmic or if you attempt it and fail you may cause your body and lungs more harm.

I wish you all the best and hope the DWP see reason appeals usually are successful get as much evidence to support your claim make sure that they contact your psychiatrist too.. Good luck and I really hope you speak to someone soon about how hopeless you feel take care x

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Phil112
Phil112
in reply to Juleswilbur

I go on holiday tomorrow. Zomorph is the tablet form of Oromorph. Last year a Judicial review raised my Daily Living to the higher level. Within 2 months the Report from Capita to DWP put it back to basic level overturning a Judge's decision. There is a short sort of Mantra which a lot of Post Sepsis Survivors believe in. I will put it here for you. It is called THE STORM.

AND ONCE THE STORM IS OVER YOU WON'T REMEMBER HOW YOU MADE IT THROUGH, HOW YOU MANAGED TO SURVIVE. YOU WON'T EVEN BE SURE, IN FACT, WHETHER THE STORM IS REALLY OVER. BUT ONE THING IS CERTAIN. WHEN YOU COME OUT OF THE STORM YOU WONT BE THE SAME PERSON WHO WALKED IN. THATS WHAT THE STORM (SEPSIS) IS ALL ABOUT.

I hope it makes sense to you as well. I have been fighting Capita and DWP now for 3 years getting Acute Pancreatitis and Acute Respiratory Failure along the way. I have had 3 psychiatrists so far but they don't understand Sepsis. I have had all the help I could wish for including the Council's Welfare Rights Officer and we go to Court yet again in September but I am running out of energy. It's just too much. I have a longer story to tell you but may do that on my laptop when away. I am also taking my DREAMS BOOK to complete. I intend to get it published. I have been told that thinking having had Sepsis would give me more immunity it actually has the opposite effect and leaves me wide open to anything that's happening. Linda watches over me and bathes even the slightest cut etc. I just want Justice and Peace in my life and not continual battles against Organisations willing to tell lies to get a result.

X Phil

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