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Posted by philly on 29 March 2016 - 07:21 pm
yes totally normal. make sure you talk to the people you trust. sepsis is life changing. your priorities will change (for the better). write down your experience- I found that helped too. you might find you have PTSD... you might at some point need to speak to your GP about counseling... it all helps. stay strong
Posted by Leila on 12 September 2016 - 05:58 pm
Posted by Mark Sollis on 23 March 2014 - 09:02 pm
Posted by Gillianflutes on 29 May 2016 - 02:36 pm
Posted by Balley77 on 05 September 2014 - 07:19 pm
I am so sorry to hear what you went through Terry. It is frightening how quickly Sepsis strikes, and there is such a small window of opportunity to treat it. If that window is missed or overlooked, it has devastating outcomes.
Things are obviously still ongoing with you at the moment, and still very raw.
I am sure you know that we are all with you on this one, and if there is anything we can do, please just ask or PM.
Posted by MarkDUK on 09 February 2017 - 09:48 am
Posted by MarkDUK on 06 November 2016 - 12:43 am
Posted by Gillianflutes on 09 October 2016 - 06:19 pm
Posted by red squirrel on 11 September 2016 - 03:16 pm
Came across this from the NICE website,proposed new guidlines for the nhs regarding sepsis,including Dr Ron Daniels of UKST,and a short vidio with stella a sepsis survivor.
Posted by red squirrel on 23 August 2016 - 06:57 pm
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
*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
Posted by Lesley-Anne on 14 April 2016 - 07:27 pm
Posted by ClareL on 01 April 2016 - 11:07 am
I am married to Marc, a man who was perfectly fit and healthy until June 2014 when he suffered from Group A streptococcus and (extremely long story short) ended up with sepsis and fighting to survive. He spent 3 months in hospital, 45 days of which were in ITU and had to recover from being put into a medically-induced coma to help him survive when all his organs were shutting down. He has since had to learn to breathe again, walk again and recovery has taken so much longer than we could ever have anticipated. We are now 21 months from his initial hospitalisation and, while things are so much better than they were, they are still far from normal.
What I find difficult is other people's assumptions that he should be better by now, and that people have no clue as to what he is and isn't capable of managing. What is a very simple task for others can be a massive challenge for him, and we are constantly re-evaluating and readjusting our lives to incorporate any difficulties he is having, while trying hard to remain as 'normal' as possible.
We have two children aged 6 and 8 who have gone through the whole process with us and most of the time are so considerate of their dad's needs. Reading some of the experiences on this site makes me wish I had been more aware of the Sepsis Trust earlier - there are so many others whose symptoms sound the same as Marc's. I have only recently begun to come to terms with what has happened to us all - I consider that we have all been affected as a family unit - and started to write about it as a way to process it all. I wondered if there were other close relatives of sepsis survivors out there who feel similar?
Posted by Balley77 on 01 June 2014 - 11:32 am
I lost my Mum to Sepsis in December 2013 (tribute is on the main sepsis site, in the Personal Stories tribute area, called 'Meryam'). As anyone who has been there will know, there is no instruction manual on how you should be, how you should react, when you should go back to work etc... Everybody is different.
For me, the support I had from Ron and Terence (Wales Sepsis trustee) by e-mails, in the aftermath of my bereavement, was such a comfort.
It is six months this week since my mum died, and to be honest it has gone by in a total blur. My sister and I have mainly been focussing on my Dad (they had been married for 42 years). We haven't really been looking after ourselves. Last week was particularly hard as my parents shared the same birthday too, so the day was a real struggle for everyone. No doubt the remainder of this year will be the same, with lots of 'firsts'.
As a family, we have thrown ourselves into fundraising for UK Sepsis Trust. It has been the focus we all needed to carry on. Our first event is next week and is a sell out.
I am not sure we will ever come to terms with what has happened, but you start to adapt. It is still the first thing I think about when I wake up, and always the last thing I think about when I drift off to sleep.
If anyone else would like to keep in touch, or I can offer any advice, then feel free to get in touch with me. My e-mail address is:
Posted by mmoo on 28 November 2015 - 07:00 pm
Posted by Galli688 on 14 November 2015 - 09:11 pm
Every time I read new post it brings back memories, at the moment I am going through a really bad time with tiredness.
I am dropping off at the drop of a hat, anytime from 3.00pm onwards and can sleep for hours if I don't set my alarm and still go bed early and sleep. I get depressed thinking there is no end to the symptoms, different ones cropping up all the time I just wish I had a magic wand. I can't walk anyway because my knees feet and everything hurts, if you hear of anything that helps please let me know. Where are you from I would love to go to one of the meetings but don't want to go alone.
Posted by Libby on 26 June 2015 - 08:28 am
Yes, unfortunately, we would consider it perfectly normal to feel so exhausted following even a short bout of sepsis. Seven weeks is very early on in your rehabilitation from this illness. I'm glad your GP has taken it seriously though- often people just get told to 'pull themselves together' and get very little help at all. Sometimes the autonomic nervous system can be affected which can lead to palpitations, dizziness, excessive sweating, bladder control problems etc (anything which is under the body's automatic nervous control), so it would be good to get the physician to just check you over. Usually, these things settle in their own time. Generally, you are looking at months rather than weeks.However, you should improve during that time - you just may not notice the small changes as you go along. Keeping a diary of your progress can help you see these improvements.
We have a 'Survivors Booklet', which you can either download from our website - under 'info for the public' or if you phone the office on 0845 606 6255 they will send you a copy.You could take it with you to show your GP. It goes through what to expect. There's also 'A Guide for Patients and Relatives' which you and your family may find helpful. Have a look at our 'IN Touch' service as well.
You will get there.
Posted by philman on 25 June 2015 - 08:50 pm
Hi Michelle, if you have a search through the forum you will see my story. I too didn't end up in ICU... well I was never even admitted - just sent home with oral antibiotics!! Since then I have been told by a couple of medical professionals that I am lucky I didn't die at home and it is only because I was a very fit and healthy chap that I survived. Sepsis, as I have found and am still finding wreeks havok with your body!! During the weeks that followed me ending up at A&E (ER) I have never been so ill in my life - I couldn't walk for about 6 weeks (my legs felt like they were not attached), excruciating pains all over my body etc too... my chest hair turned grey within the space of a week!! The sepsis effected my Pancreas, so I had pancreatitis which was like having someone stabbing me inside my chest, and also and inflamed appendix!! Probably more things too - but just to say life does improve - but at a frustratingly slow pace unfortunately. This November it will be 2 years from when I got sepsis, and I am still not 100%. My vitamin D is low so I have recently been prescribed Vit D and Calcium tabs from the dr, I still have all manner of aches and pains (i find stretching helps), still get fatigued, wierd flushed feelings... I could go on. It took me a whole year before I had the energy to walk my kids to school - this was really hard to take and frustrating as before sepsis I used to jog every night with the dog and was very fit doing other sports etc. I know this probably isn't what you want to hear - and hopefully recovery will be quicker for you, but I remember being in your position weeks after sepsis reading forums thinking 'surely it won't take me that long to get better'... it seems I was wrong. Unfortunately the NHS and it seems other health services around the world don't fully realise the after effects of having sepsis and what a tough and long process recovery really is. I to am 38. I have and wife and 3 young boys, and I always remind myself when feeling naff that I need to be greatful that I am still here for them. I long for the day when I feel full of energy and well, I hope you find that place soon too. All the best, stay positive, look after yourself, and keep in touch with us on the forum. Cheers, Phil.
Posted by email@example.com on 05 September 2014 - 08:33 am
I am so sorry to hear about your great loss. This is really bad. The hospitals struggle to detect sepsis it seems. I am a sepsis survivor, I had sepsis in April this year, mine started as a viral infection, then within 2 weeks had turned in to double pneumonia and sepsis, the hospital A & E Department, failed to recognise I had sepsis and released me after 1 hour, I was told my the A & E Doctor to stop worrying and just relax, she failed to spot my prurple rash on my face which I pointed out to her, my heart rate was up, my blood pressure low, I had all the signs of sepsis on that day I went to A & E, I could not stand up, this was on the Friday day, they performed an X ray, which she told me was clear, gave me anti bitoics and sent me home. It turned out I had pneumonia on the Friday and sepsis, I went home I was severely tired, no appetite at all, not really drinking as such apart from taking medication. I was vomitting bile.
Consequently, the next day on Saturday by lunchtime I couldnt walk I was in a deep sleep, not drinking, severly dehydrated, my mother was over that day and called an ambulance as I became unresponsive completely, couldnt move, Paramedic came, he spotted sepsis immediately, which the doctor failed to recognise the previous day, my heart rate was very high, I was tachycardic, could have arrested at any time apparently, he couldnt get an IV line in, my blood had started to coagulate in arms, they rushed me into resus, where doctors were waiting for me, within 20 minutes they had an IV line in my arm, bloods were taken straight away for cultures, an x ray was performed straight away and revealed I had severe pneumonia, the doctors were talking and saying that I should not have been released the day before and was very lucky to respond to the anti bitoics, I was on a heart monitor all night and blood pressure was very low, but monitored every half an hour, I was placed in an acute ward and constantly monitored. My body like your son's was very swollen all over, severe rash,temperasture of 104 degrees, struggling to breathe etc.
I was in hospital for 4 days, then released with a lot of antibiotics. To cut a long story short. I did lodge a complaint against the hospital and the doctor that treated me. I have had my complaints meeting with hospital Consultants and clinical director in July this year, I went into the meeting armed with research from British Medical Journal, to which they could not argue with, I can honestly say, that the Consultant over A & E and clinical director admitted I had sepsis on the Friday when released home, they also stated that I was very lucky to be alive the following day, they admitted negligence in front of my son & myself, which was a victory to me. I have since had all of this in writing from the hospital and signed by chief executive of the hospital.
Since my case had been discussed at the hospital big meetings they have with all departments, they have now rolled out training now across the hospital with all departments raising awareness of sepsis and used me as their case study, I have had apologies from Consultants in person and stated they had failed me. It is not very often that hospitals admit in person and in writing that they were wrong. I now have lung problems now in my right lung and my lung has collapsed and struggle to breathe and get very out of breathe now, compromising my health now, but I am alive and very grateful but feel anger also as I was a very healthy 45 year old.
Also, the Doctor who treated my and failed to diagnose sepsis, turns out to be Romanian,I asked the Consultants where she had done her medical training and it was in Romania not in the UK which I am not a predujiced person, however the hospital have now sent her for re training over at University Hospital in a large City, which I will not name for libel or legal reasons or even state which hospital this was at, apart from it was in the West Midlands area.
My advice would be question, question, question, the hospitals as to why this was not detected earlier as you need those answers otherwise you will not heal emotionally until you have those answers, my thoughts are with you at this difficult time and your family and you will get a lot of help and support on this site from survivors but also from people who have lost love ones, I read a post the other night on here about a little girl who died, when I read it I was in tears they would not stop and I have tears in my eyes from your story too.. But ultimately, there needs to be more awareness of this silent killer and I will do what I can to raise this awareness. Feel free to contact me if you need any more advice. Take care.
Posted by davegore on 10 March 2017 - 09:59 am
good to see the word and the symptoms being spread for more people to see