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Derug

Post sepsis syndrome

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Derug

 

I've posted before but a while ago, I had sepsis 2012 ITU 9 weeks 12 weeks hospital, I,v had PSS since then 5 years+, I live on pain killers there just trying me on morphein patches, all the specilists I have seen won't call it PSS, they call it post ITU syndrome, with fibromyalgia, I have all the symptoms listed for PSS, I just would like to no if there is any research going on, and how long will it last, will it ever go, is this how it's going to be for the rest of my life now. I'm 48 and haven't been able to work since sepsis, I do get PIP and ESA, and my husband works our children are grown up now. PSS is so hard to live with it get me down, and I hate feeling tired all the time. I would love to here from anyone else who's in the same boat as me and would love some answers to my questions.

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Hi Derug,
So sorry to see that you are having such awful issues after Sepsis.  Have you seen our Survivor Booklets?  We have a Support Team at The UK Sepsis Trust, If you would like to chat to one of us please call 0808 800 0029.
Regards research on Post Sepsis Syndrome, there is some research from the USA which is mainly based on patients who spent time in Critical Care.  If you would like to email me at emma.collins@sepsisturust.org I will send you some information.

 

Best wishes

Emma Collins

Support Nurse

UKST

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Hi Derug,

So sorry to see that you are having such awful issues after Sepsis.  Have you seen our Survivor Booklets?  We have a Support Team at The UK Sepsis Trust, If you would like to chat to one of us please call 0808 800 0029.

Regards research on Post Sepsis Syndrome, there is some research from the USA which is mainly based on patients who spent time in Critical Care.  If you would like to email me at emma.collins@sepsisturust.org I will send you some information.

 

Best wishes

Emma Collins

Support Nurse

UKST

I was diagnosed with PICS (Post Intensive Care Syndrome) in 2012. I had Severe Chest Sepsis which caused hypoxia. I was mechanically ventilated for 3 weeks whilst in an induced coma. I got a lot of information from the charity ICU Steps. Most of the medical literature say it usually lasts for up to two years. I’m 6 years Post Discharge and still have lingering issues. Does the UK Sepsis Trust work with other organisations involved with Critical Care (for example ICU Steps) in researching these syndromes ? Only recently has it made the headlines that these syndromes exist. I do however think the NHS is not addressing the issue and post-discharge support is poor. I had to seek help from my GP which could have been addressed by an outpatient appointment with an ICU nurse Post Discharge as they are the specialists. Are there any NICE guidelines on this ?

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Hello Eddie

 

My name is Oliver and I'm one of the support nurses at the UK Sepsis Trust.  I'm sorry to hear you are suffering some of the after effects of Sepsis.  We speak to people frequently who are discharged from hospital with little or no information about Sepsis and some of the common after effects.  Unfortunately it also appears some healthcare professionals knowledge of the post Sepsis period is limited.  This is mainly due to a lack of awareness and understanding and there being little research into the long term affects of Sepsis.  Some hospital trusts will offer follow up services after discharge from Critical Care but this is not mandatory and seems to be focusing on the post Critical Care group of patients.  To our knowledge there is no NICE guidence on post Sepsis follow up at present, however the UK Sepsis Trust are keen to identify current practice with a view to developing some robust guidance.  Please feel free to call our freephone support number, 0808 800 0029, and we can discuss this further.

 

Kind regards, Oliver.

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Hi Oliver

 

 

Thanks for your post in my experience there is no help for patients like me, nobody seems to understand all the problems that we are left with, I did have some intensive care follow ups with the sister on the ward, for the first few months out of hospital, if I can be any help in gathering information to help other in my position, I do feel that there needs to some help out there for people left with all these horrible syotoms, I'm in the porosses for having some CBT. At the moment, this is the third time I've been as I was also left with post traumatic stress disorder and depression, I have a large surgical herna that was repaired, 3 years ago but was unsuccessful, I got sepsis because I stuffed a ruptured bowel that was left undiagnosed for 10 hours, I also had a stoma that has been reversed, but I do have a really struggle with the way I look now, I hate how I look. I have been unable to have any surger on my herna again as I have raised inflammation markers in my blood, I have been under a rumatolagist for the last 2years, been on lost of drugs, but nothing has worked, and no one can find out why I have raised crp and esr levels, they are concerned I won't heal properly. If there is anyone else out there suffering similar to myself I would love to get together to we can put all the information we have to help others in the future, I would for something good to come out of something horrible.

 

Thanks for your support my name is Denise

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Morning Denise

 

I'm sorry to hear you are having such a difficult time.  I'm pleased to hear you are engaging with some talking therapy.  Some people find this very helpful.  Please feel free to call the free phone Sepsis support number, 0808 800 0029, to speak to one of the qualified nurses.  Or, have you thought of attending one of our support groups? Follow the link and scroll down the page to enter your postcode https://sepsistrust.org/support/ If there isn't one near you yet then keep an eye out as the list is growing.

 

We wish you the best in your recovery.

 

Kind regards, Oliver

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