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NatalieP

Have I got Post Sepsis Syndrome?

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Hi,

I've come across this forum so I am hoping someone here can give me some advice or just listen as I feel like I am losing my mind?!

I contracted Sepsis during the birth of my first baby in September 2017.  I was Group B Strep positive and knew this at the time however my local hospital did not act on this and I was left 24+ hours with leaking waters not progressing to labour.  I was found in my hospital bed the morning following my admission semi-conscious with tachycardia, high temperature, etc and it was determined I had Sepsis.  I was treated very quickly IV antibiotics, fluids, oxygen, had numerous blood tests and swabs taken and was looked after by a team of doctors and midwives.  I thankfully improved a little and was able to give birth however my daughter was born with GBS infection and Sepsis.  Thankfully she made a full recovery with no lasting effects.  We spent a week in hospital on IV antibiotics and I continued antibiotic treatment at home for a further week.  Healthcare staff did not really tell me what was wrong with me or what was going on and I had to learn myself from reading my notes on release from hospital.  It scared the life out of me and feel there was negligence which I'm currently addressing with my local NHS Trust.

I somehow got through the first 6 months of my daughter being born I completely focused on her and tried to forget about our ordeal as I didn't want to ruin that precious time.  Of course it hit me 6 months later I was a complete wreck needed counselling and was diagnosed with PTSD and anxiety as a result of what we'd been through.

Since the Sepsis I have been so tired and lethargic, dizzy/light headed, headaches, feeling generally run down, brittle hair and nails, dry itchy skin, random joint and muscle pains.  I have PTSD and anxiety with flashbacks, nightmares and insomnia.  I never suffered with my mental health before.  I was an extremely happy positive person with so much to look forward to and I understand I still do and count myself very lucky that things did not turn out worse.  I don't feel depressed however I know I am suffering from anxiety over silly things.  I am worried about going to my GP about this because I don't feel they will understand.  I've had bloods taken and my blood pressure monitored to rule out any issues that may be causing some of my symptoms.  I know tiredness comes with being a new mother but she is now nearly 18 months old is a very settled child and has slept 12 hours through the night since she was 7 weeks.  I came across this website whilst google searching and feel I may be suffering from Post Sepsis Syndrome?  I feel like no one will understand when I try to explain how I'm feeling and I don't want to come across as a drama queen.  I didn't spend any time in ICU.  I was in the right place when I contracted Sepsis and I was treated very quickly so I'm not sure if this rules me out for PSS?

If you've managed to read this thank you!

Natalie 

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Hi Natalie,

 I need to keep this reply short as I'm just taking a couple of minutes off waiting for glue to dry.

If you read my post just above yours (5 months since kidney surgery), you'll see that you are not alone. I TOTALLY thought I was being a drama queen, that my fatigue was me being lazy and that I had turned into a hypochondriac. My GP knew of sepsis, but not enough to address it  and denied therapies I felt were worth a try. I ended up switching doctors. First visit was better, but she did not have in depth knowledge of what we are going through. She at least listened, ordered blood work that other doctors had not and received the sepsis document downloaded from here as homework to read before my next visit this Friday.

I pushed myself on the treadmill this weekend (only 4 minutes before I had to stop from pain.). I've felt major fatigued since then... Read the posts here and take the advice from others with experience over longer periods than I regarding patience, giving yourself a break and (I think, most importantly), grace to recover.

Wishing you the best,

Richard

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Thank you so much for your response Richard it makes me feel like I'm not alone and not going crazy which in itself is helpful.  It sounds like you've had a terrible time and are still experiencing difficulties which I hope get better for you with time. I guess this whole thing does take time and we will have to accept that.

Thank you again for your kind response I really appreciate you taking the time to read my story and it reassures me a little. I'm going to speak to my GP and go armed with as much information as I can on PSS.

Natalie

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My Pleasure...

I remember (after reading a lot of posts here), learning that I wasn't the only one. Reading more, I began to learn that I was doing well compared to others. Then what I learned was not to compare my recovery to others! That became very important. We are all different, different reasons for contracting Sepsis and different reactions to it.

I had a long work day the other day with very little rest... The result were symptoms being more pronounced and needing LOTS of rest... (I do have a hard time listening to my body and resting... (Impatience is a hard thing to set aside when you're remembering how you used to feel before this and just want to press a magic button to "reset" to normal.)

I do hope you're reading as many threads here as possible. LOTS of great information from people with a lot more experience than I. I'd also suggest printing some of the downloads from this site to take with you to your GP. I did and she very enthusiastically accepted them to read.

Wishing you well,

Richard

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Hi Natalie and  welcome to the forum. firstly  you are certainly not any kind of drama queen , i have read from other members of here who contracted sepsis post childbirth, it might be worth reading arround when you feel up to it. in the meantime you might find it helpfull to speak to one of the sepsis nurses  0808 800 0029. apart from this forum and the members on it  they were the only source of information on sepsis and recovery  that we could find at the time. my sepsis was post surgical  and i have had to learn the hard way to manage my expectations regarding recovery. in the beginning i pushed myself to hard and then paid the price. knocking myself out for a week or more only to have to start again.

i know it may not feel like it right now but you are doing really well. you both survived ,and thats wonderful news. recovery takes time and there will be setbacks along the way. but there is help available .you are not alone in this anymore.

kind regards ian

 

 

 

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Hi Natalie

Great advice and support from the forum members as always.  I am sure you can see all the problems you are experiencing are very common during recovery.  The poor understanding and awareness of sepsis recovery can make it feel a very lonely place to be at times. We have a helpline at the Sepsis Trust, it is manned by trained nurses who have a lot of experience caring for people with sepsis and a good knowledge and understanding of recovery.  You can call and talk to them about your recovery and ask questions you may have.  They can be contacted Monday - Friday 9 -4 pm by calling confidential freephone number 0808 800 0029.

Sepsis Helpline

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Firstly apologies for the delay in responding life has been busy and I am always so tired once I have gotten a chance to sit down I just fall asleep.  But most importantly thank you so much everyone for the support and encouragement!  I don't feel so alone in this fog of fatigue!  I'm arranging to see my GP on Thursday and have printed the Sepsis Survivors booklet for him but not sure what else to do?  I think I'll ask for full blood work to be carried out to rule anything else out and I had read on the forums about vitamin B12 injections which I'm not sure if they'll entertain?!

 

Thanks again guys I hope you are all doing okay.

 

Natalie xx

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Hi Natalie, 

New to this and just reading your story and sorry to hear how you are feeling. 

I feel much the same as you, I developed an infection and ended up in hospital after a few days of struggling and I wasn’t even sure why I was getting the treatment at first until I realised it was sepsis and read up about it. I got treatment very quickly and only stayed in hospital for a week and took a further 5 weeks off work.  

I have been extremely tired since this and really struggle getting through the day without wanting a lie down.  I am always worried about getting sick again and I didn’t realise how much it had an effect on me until I visited a friend in hospital last week and I have never felt so anxious. But again like you always feel like I’m being dramatic but it’s good and not good to hear other people are feeling similar. 

M x 

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Hi Maz

People are often surprised by their recovery and how long this can take.  You can talk about your recovery to one of the sepsis support nurses at the UK Sepsis Trust . They are all trained nurses with a lot of experience of sepsis, you can discuss what has been happening and have the opportunity to ask questions.  If you select the link below you will find out the various ways you can contact them.

UK Sepsis Trust Support

Larry

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Hi, There are so many variations of the effects of sepsis.  I am finding it very difficult to come to terms with my experience and feel that I should stop thinking about it. To cut a long story short I lost 5 days completely.  I am gradually remembering snippets of that time, such as nurses telling me they had to take all the blankets and put a fan on.  I am medical myself which seems to make it all worse as I know how the ‘sepsis six’ is drummed into us.  After 24 hours of not really knowing anything (I do not remember the journey home from America to UK) I don’t remember picking up the car at Heathrow or arriving home. My husband took me to the doctors the evening we arrived home.  My temperature was 38.6, I was having rigours, my pulse was 132 the GP told me it was a UTI.  Apparently I told him I thought it was pyelonephritis and was he sure (some part of me was working although I do not remember).  By the next evening we saw another doctor, my temperature was 39.8 and I was immediately admitted to hospital.  I had pyelonephritis, pneumonia, my liver function tests were terrible, I needed blood transfusions, I had a pancreatic stent, I have a splenic arterial aneurysm which they think has been caused by the infection.  7 months later and 3 operations I have managed to return to work very part time but I am exhausted.  I feel afraid that this tiredness will not go.  I miss my old life where I was super fit.  My liver is still far from normal which has knock on effects such as my serum ferretin which are very high making my joints and muscles ache.  But I am alive, my poor husband was told there was a good chance I wouldn’t be.  I am sure my brain is a little slower but I am hoping all will return to normal.  How long do you think this will be? Has anybody been through similar who would tell me there recovery experience.  I keep reliving it and try to fill in the gaps.  My husband tells me I must move on but I cannot quite believe it all happened.

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Hi Sallp, Sorry to hear you have been so poorly and are still struggling with recovery from sepsis.  You may find it helpful to discuss your recovery with one of the support nurses from the UK Sepsis Trust, you can talk to them about how you are feeling and ask any questions you have.  Sometimes it can be very helpful just to talk through what happened and how you are feeling with someone in confidence who  understands sepsis and sepsis recovery.  Healthcare professionals  are not always good at looking after themselves and taking the time to talk about how they are feeling.  I have provided  links below to how you can contact the team and to our sepsis recovery booklet.

Sepsis Support Team

Sepsis recovery Booklet

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