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What is post sepsis syndrome

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I v been reading around and found some interesting stuff on post sepsis syndrome (PSS), Its taken from two studies one recent (2016) one not(2013).So what is it.

 

Post sepsis syndrome is a condition that effects upto50% of sepsis survivors they are left with physical and/or psychological long term effects such as...

*insomnia,difficulty getting to sleep or staying asleep.

*nightmares vivid hallucinations and panic attacks

*disabling muscle and joint pain

*extreme fatigue

*poor concentration

*decreased mental cognitive function

*loss of self esteem and self belief.

however this does not mean we will experience all of these effects for some of us it may be none,for others it may be one or all.i feel i can identify with most of them,maybe not all of the time,on the same day .the  john hopkins study went on to explain that many sepsis survivors report symptoms of post traumatic stress disorder (PTSD).and that these risks are higher for people who are admitted to intensive care.It went on....

What can be done about PSS.

post sepsis syndrome must be recognized by doctors and health care professionals so that patients can be directed to the proper resources which may include referral for emotional and psychological support,counseling,cognitive behavioral therapy or assessment for physical support such as physical therapy.

awareness seems to be key

what are your experience of PSS.

 

kind regards ian

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Hi Ian

It's 6 months since I left hospital after a month stay battling sepsis, pneumonia and pulmonary emboli. On my discharge note it states I could return to work after 2 months!! I now realise how unrealistic this was and unfortunately I am nowhere near able to return to work.

My GP has just given me a fit note, (Im chuckling to myself as I type this) stating I have post sepsis syndrome.

 

I have no stamina, constant pain in my legs which always feel weak and heavy, I have nightmares which are always hospital based, I've lost 50% of my hair and my mind is not as sharp as it was before. Last week I had to take my parents to our local hospital where I was an inpatient. I was driving and an ambulance, siren on, went past us not an unusual occurrence especially near a hospital. I could feel my heart pounding and I gripped the steering wheel like a vice while trying to keep up appearances for my elderly parents.

 

I have always been proactive regarding my health and I've been told my healthy habits are probably what helped me to survive. I drink lemon and ginger tea with honey first thing every morning, I drink 2/3 litres of water per day, I eat my 5 a day, I'm following the exercises given to me by my physio and I focus on the big plus I'm alive to be able to moan about my ongoing health problems!!

 

I was extremely lucky to get a prompt diagnosis in A&E and excellent inpatient care the majority of which was in ICU. My follow up out patient treatment has been poor and disjointed and I wonder if this is significant when it comes to post sepsis syndrome. Had we suffered a heart attack or stroke for example there are clear guidelines for our after care not so with sepsis. Locally I would have been supported by a rehab team from day one at home which would have included physiotherapy home visits.

My reality was no physiotherapy for 3 months, no respiratory follow up for 3 months and no information, advice or support regarding Sepsis. I was so grateful when I discovered the Sepsis Trust and was able to get their booklets. I think my reality is probably a lot of survivors reality and I do think it probably contributes to PSS.

 

I have contacted my local health improvement team and wrote on Patient Opinion about my experience. In the last few days I have been contacted by a local NHS manager and I've been invited to have a discussion about my out patient care. I have also raised the issue of the lack of publicity and information on Sepsis in Scotland. I have attended numerous hospitals, clinics and my GP surgery over the last 6 months and have not found 1 leaflet or poster about Sepsis. I know there has been a lot of work raising awareness of the Sepsis Six with professionals but there appears to be no publicity material aimed at the public. As we all know knowledge is key to cutting the number of deaths from Sepsis.

 

My own view is that just as there needs to be a lot more awareness about Sepsis there also needs to be a lot more awareness of the after effects of Sepsis and PSS. With more awareness hopefully comes more support.

 

Healing thoughts to all survivors

 

Lesley-Anne

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Hi Lesley - Anne,

Thank you for your help with raising awareness about Post Sepsis Syndrome, it's much appreciated and I do agree, awareness is the key to support. At the UKST we do try and raise awareness re: the public and healthcare professionals about the after effects of sepsis as we appreciate how difficult it is for all sepsis survivors. Unfortunately, we are a small charity and so, can only afford to send hospital critical care units, GP surgeries, universities, public events etc a few samples of our Survivors' booklet, Patients and Relatives guide and factsheets on PSS. If they are interested in ordering numerous copies for their waiting rooms and public areas, there is obviously a charge to cover the printing and delivery etc.

We do hope to obtain government backing and sponsorship for this area of our work in the near future. Last year we had a 'Survivors' Panel' at our first conference and one is planned again for this years conference in October which will again discuss the effects of PSS to raise awareness in health care professionals and the public. We do also discuss PSS and try to help survivors through their rehabilitation period at our various support groups already up and running, but it will take time, funding and help from many volunteers and the government to raise awareness around all the UK about the very real after effects of sepsis. Be reassured we will keep trying and if there's anything else we can do to help you through your recovery, do just ask.

BW,

Libby. 

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I have no stamina, constant pain in my legs which always feel weak and heavy, I have nightmares which are always hospital based, I've lost 50% of my hair and my mind is not as sharp as it was before. Last week I had to take my parents to our local hospital where I was an inpatient. I was driving and an ambulance, siren on, went past us not an unusual occurrence especially near a hospital. I could feel my heart pounding and I gripped the steering wheel like a vice while trying to keep up appearances for my elderly parents.)

 

hi Lesley-Anne, thankyou for your post you just described me and i suspect many others.i know i have PSS. there was so much of your post i could identify with and its important to know we are not alone .its now 8 months post for me and im still struggling, this is much harder than i thought it would be,i arrived here via a pre-existing condition iv spent a few years in the NHS system and was and remain in a high risk group for sepsis....but i,d never heard of it before ,never seen a leaflet no one i,v ever met either through pre-op assesments surgerys chemo has said anything to me or my partner,so your right awareness is the key factor here,and like you i intend to do as much as i can to help get the message out there.

wishing you the best it can be,and remember your doing really well under some very difficult circumstances.

 

kind regards ian

 

Hi Lesley - Anne,

Thank you for your help with raising awareness about Post Sepsis Syndrome, it's much appreciated and I do agree, awareness is the key to support. At the UKST we do try and raise awareness re: the public and healthcare professionals about the after effects of sepsis as we appreciate how difficult it is for all sepsis survivors. Unfortunately, we are a small charity and so, can only afford to send hospital critical care units, GP surgeries, universities, public events etc a few samples of our Survivors' booklet, Patients and Relatives guide and factsheets on PSS. If they are interested in ordering numerous copies for their waiting rooms and public areas, there is obviously a charge to cover the printing and delivery etc.

We do hope to obtain government backing and sponsorship for this area of our work in the near future. Last year we had a 'Survivors' Panel' at our first conference and one is planned again for this years conference in October which will again discuss the effects of PSS to raise awareness in health care professionals and the public. We do also discuss PSS and try to help survivors through their rehabilitation period at our various support groups already up and running, but it will take time, funding and help from many volunteers and the government to raise awareness around all the UK about the very real after effects of sepsis. Be reassured we will keep trying and if there's anything else we can do to help you through your recovery, do just ask.

BW,

Libby. 

Hi Libby thankyou for your post,i can honestly say im not sure where i would be if it were not for the help and support given to me and and my partner by the trust and this forum since i left hospital,raising awareness is going to be a long road,but as you say change is happening.and will happen.

I recently took part in an abseil to raise money for the new cancer wing at my hospital,its all glass with ,a relaxing area,a space to talk and meet others,to read,have a coffee,a green space and so on,in other words its fantastic....many are aware now of symptoms and treatments for cancer and are willing to talk about it.

But this was not always the case..just before it was my turn to go up.i spent some time downstairs ..there was a talk by one of the consultants about all the changes that were taking place and the positive effect this would have for patients.He explained that not that long ago the cancer patient entrance to the hospital was via the cellar......no body wanted to see them,or be around them,there was a collective sigh in the room....,hard to believe now of course.I believe it will be the same for sepsis it may take time,but it will happen.

 

kind regards ian

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Hi Libby and Ian

 

Many thanks for your replies to my post.

 

I know the Sepsis Trust is a small charity and understand the cost implications in supplying literature to NHS facilities across the country. It would be cost effective for the NHS to purchase leaflets and posters to raise awareness as they would save money in the long term. If patients receive a prompt diagnosis not only does it save lives but hopefully people having received the correct treatment from the start would recover quicker and have fewer long term problems. In the meantime I am trying to raise awareness locally.

 

You were very brave to do an abseil Ian good for you. It is true people did not speak about cancer but now that the vast majority of us have been touched by it in some way and know people who have not only survived but have also been cured it is no longer a taboo subject. I hope your health continues to improve.

 

Lesley-Anne

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With you all on this one. Receiving sepsis literature on leaving hospital would have been brilliant. I left hospital with a booklet on post operative care concerning a back operation I had had (which led to infection then sepsis). Wasn't even aware I'd had sepsis until I paid for my medical records. This was back in 2009 and I'm sure information is much improved now.

Re cost of doing this. Yes in my mind (no research) the cost of leaflets would be less against costs of not doing so, for all the reasons you have given. Back in 2010/11 I was a 1 man crusade asking why information on sepsis wasn't given when it would be cost effective. The answer I got was departmental budgets wouldn't allow it. Meaning one department would pay for the leaflets with no savings in and the post hospital costs are born by other departments. So a department wouldn't invest because they wouldn't get the financial benefits. May be a simplified scenario but it's the one I understood. Daft.

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Ian I'm glad to see you writing about your ordeal. Writing like you did does have it's benefits. I pray you get and feel better a little bit each day. For myself, I decided a strong mental approach and attitude would help me progress. If I knew a way to rally my internal chemical composition to fight the infection and it's aftermath, I'd have done that too. I share in some of your aftermath, and I've seen some progress as of late. I hope you do too. Here's a bit about me........

 

62-year-old male - Chicago suburbs here. I was diagnosed with sepsis in July 2016 after complications from a botched surgery for prostate cancer. I spent 17 days in the hospital. I returned home and administered antibiotics with a pic line for 6 weeks. I returned to work in late August as a way to push myself towards recovery. Sitting at home was driving me crazy. During my time at home I read about sepsis as I knew little about it while in the hospital. I thank god every day for helping me through this ordeal, and leaving me in a good, not great state at this point in time. I'm still under the care of an infectious disease doctor, and get blood draws every two weeks. Things are going in the right direction right now. My recovery was not without complications. My biggest hurdles are:

 

 

Depression, which I have overcome. I was grieved upon returning home and I started to see the toll I took on my wife and daughters. We all spoke, I cried a lot and eventually came to grips with things. I really feel getting back to a work routine and staying busy, prevented me from laying around thinking about things. It worked for me I can tell you that. Sepsis affects more than the person infected.

 

 

Pain, which I still have. My legs are achy and sore a lot still. Some of the more pronounced muscle pain I had several weeks ago has disappeared. I'm optimistic the remainder of the soreness will also ease up as time progresses.

 

 

Hair loss. My fullish head of hair has thinned a lot. I'm not ready to be bald. However, if this is the price I pay, compared to others misfortune, I thank god and willingly accept my consequences.

 

 

Given the fact that three months ago, I could not walk because of intense leg pain, my vitals were off the chart, and I was trying to recover from cancer, I've been blessed to be where I'm at right now.

 

 

I'm happy I found this sight. It feels good just to type and share my experience. I hope as a member I can help someone else someday. There's light at the end of every tunnel.There was at mine. It just takes time, patience and some mental determination to accept nothing but the best for one's self. God bless all sepsis survivors and their families.

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Hello george_b

thankyou for your insightfull post sharing this part of your journey,its good to hear that you now feel after your surgery that things are going in the right direction its important to have faith in the people into who,s care we have been placed,It can be  tough  when we are dealing with one condition and then be presented with another,to be honest with you i underestimated sepsis,iv had to learn the hard way.for me this is taking time,much more than i thought..but like you there is progress it may be small progress at times.and there will and have been setbacks,i accept that now in a way i could,nt a few months ago.

Im glad you found this site also.

 

wishing you recovery

kind regards Red

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 Hi Everyone ,

Didn't see this thread until today and have posted elsewhere about my experiences of post sepsis syndrome but I'll share them anyway .

 

Most of my problems post sepsis were psychological once I had learnt to walk again and that involved flash backs to my ' fever/terror ' dreams I experienced whilst on the Life Support Machine and the realisation of how close I had come to death .

My lungs and sole kidney failed at our local hospital here on Skye - I was put into an induced coma , wrapped in some sort of tent and flown to Paisley .

After a week or on the Life Support Machine my wife had gone home to Skye to fetch a clean set of clothing , she had crossed the Skye Bridge at around midnight when her phone rang , it was the ICU Nurse informing her of my death - ' I'm afraid Peter passed away a few moments ago ' went the conversation - she continued to console my wife then blurted out ' Hold on he's back with us !! ' - to this day I don't know whether the Doctors continued to administer the defibrillator or my heart re-started of its own accord . My wife's initial thoughts were that the ICU Nurse was lying until she could return to Paisley , a 5 hour + drive from Skye but no the Nurse insisted I was alive once more .

I was in hospital for a total of 3 months - I left Paisley after a 2 month stay but contracted pneumonia upon coming home after a 12 day stay at our local hospital . My wife didn't tell me of my cardiac arrest until I'd been home 3 months .

My main problem were the terror / fever dreams I had experienced - to cut a long dream short , I was kidnapped and held hostage by around 6 peoiple , two of them  black women - I was sexually assaulted and drugged then tied up . The dream involved me escaping then being re-captured and being held prisoner in some form of basement . I thought I had worms going down my throat and a fish taped to my forehead !  I also experienced seeing flowers with faces hovering above other patients' beds and when a man turned to me in the next bed his face was that of a scarecrow - Another dream involved Chinese officials coming to our house telling us we no longer owned it and ordering us to leave  - all very strange I know .

In reality I had been struggling with nurses and had pulled out the tube that was keeping me alive thinking they were worms  , - I was a bit of a nuisance and needed restraining [ hence the assault dream ] , however I didn't discover this until my wife told me months later .

 

It was the dream experience that played on my mind upon returning home - certain films would remind me and although it seems silly looking back 4 years later the whole thing really bothered me - I was thinking of death every day - I also felt guilty about having survived  [ a weird feeling in itself ] .

This went on for months until eventually I plucked up the courage ' to see someone ' - I was told by my GP that it would be someone local but when the letter arrived from the Mental Hospital in Inverness I cancelled the meeting not wanting to be labelled as a ' mental patient ' [ my dream also involved being sectioned by my GP ] . However after 18 months I agreed to see a Psychologist .

I saw her on three occasions and while she was very pleasant I really didn't see how she was going to be of any help and told her I was coping .

 

What I did find that helped me was writing down my experiences - I found myself telling folk on the football forum I belong to what had happened to me - even Ebay folk I bought stuff off [ I must have appeared as a total weirdo ]  and now here . It was my way of dealing with it and I found it cathartic . I self analyzed I guessed .

 

 My self esteem certainly took a hit - didn't realise it was part of post sepsis syndrome - I also can't sleep over worrying about things and if I stop worrying about something I'll move on to the next thing to worry about - I cannot deal with some every day problems , I'm reliant on my wife to solve them for me when in the past I'd have coped easily - for instance I was suppose to talk with a pensions adviser this morning and couldn't face him on the phone - it's as if I want a ' magic fairy ' to help me out each time and come back saying everything has been dealt with - I cannot seem to cope with responsibility . Is this normal ??

I always thought it could be the strong opiates I take for my back problem and of course it could be - it could be post sepsis syndrome though .

 

 There is certainly a need for more research into ' Post Sepsis Syndrome ' , more of an understanding of patients who survive .

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Hi Skyehammer

Sorry to hear you are still having such a difficult time.  Many people do suffer with loss of confidence and poor self-esteem following sepsis, this is often compounded by problems that affect our ability to perform as we did prior to sepsis, such as extreme fatigue, memory loss on poor concentration.

 

Psychological therapies can be useful in helping deal with some of the psychological problems that occur following sepsis, there are different types of therapies available and it can be the case of finding the right one for you.

You are absolutely right we need more research into the long term effects of sepsis, the mechanisms that cause all problems that occur and most importantly how we manage these problems and support survivors through recovery.

There also needs to much more awareness about PSS, this includes the general public and healthcare professionals, if we can get more people to understand and acknowledge PSS it may help make it a less lonely place to be for survivors.

 

If you would like to talk about to one of our support team about your recovery, then you can contact us on 0800 389 6255 or info@sepsistrust.org

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Hi Larry ,

Thank you very much for your kind message , I have to apologise for not seeing it until today .

 

I came here seeking advice about a constant problem I've had , well , two problems -

 

I think about dying or death every day and my memory since the cardiac arrest has been affected badly .

 

I'll talk about my problem or obsessive thinking with Death first .

 

While I was on the Life Support Machine and Dialysis Machine I suffered several cardiac arrests , one of them bigger than the others ,  a pacemaker was fitted until the arrests became less frequent and eventually stopped - the Doctors told my wife that they didn't think I would survive and if I did I would most certainly be suffering from brain damage so I'm not sure why I'm still here , I was lucky I guess - Don't get me wrong I'm very very happy that I survived , I love the life that I'm living , I have the best wife and two brilliant children , I live in a very beautiful part of the country . However , there isn't a day that goes past when I don't think about dying or death - I'm 62 , I'm disabled with a spinal problem which means I can't walk very far so I'm not sure how much this plays on my mind , not being able to exercise as much as I should but if it hadn't been for my episode with sepsis I'm pretty sure I wouldn't have these thoughts about dying floating about in my head each and every day . I'm a pretty positive person on the whole , it's just I have these daily thoughts .

 I'm guessing this is a pretty common problem , would it be worth seeing anyone about it , is it a form of depression or obsessive thinking , can someone help me with this or should I accept it for what it is ?

 

 My memory problem .

 

I can remember things which happened years ago without any problem , it's just the simple every day things I struggle with , Doctors' appointments mostly , things my wife tells me , I've got to the stage whereby I keep a notepad by my chair in the lounge to keep a list of things I need to do .

I went to see our Doctor about it but she just brushed it off as ' getting old ' or the painkillers I'm on , I always thought it was linked to my sepsis but my Doctor doesn't agree - are there any excersises I could do , should I return to our Doctor ?

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