Can I ask for your sepsis survival stories?

[LokiBear]

I know it isn't an 'AIBU'. Im posting for traffic and, in all honesty, because I just need to hear other people's experiences because im scared and have no one to talk to.

My dad is 56, he is a smoker (although not any more) but is generally a fit and well person who proudly has a 'peak flow' measurement equivalent to a non smoker. Anyway, a few weeks ago he became poorly, refused to go to the doctors, then reluctantly went and was diagnosed with vertigo. Medication didnt help, mum forced him to go back to the doctor who prescribed antibiotics for a chest infection. He had stopped smoking completely at this point. Two days later he was in hospital with pneumonia and sepsis. He registered as a 10 on the sepsis scale, with doctors and nurses telling my mum they hadnt encountered anyone higher than a 7 before. 5 days of intravenous antibiotics didnt result in anything more than a slight improvement. He is very sleepy and confused. Can't remember things that have happened, hallucinating that the clock was talking to him etc. He seems to keep developing a high fever at night. The hospital changed the intravenous antibiotics to a different type. Yesterday evening he looked so much better and we thought we'd turned a corner. Today he looks terrible again, is very pale and cant stay awake. Was absolutely vile to my mum and nana earlier today, accusing them of taking the piss when they wernt. This evening, he cant remember any of it, was quite jovial. He recounted going out for a beer with his dead grandad as if it happened this afternoon. He seemed aware that it wasnt real, but was really jolly when talking about what they talked about. The hospital have taken him for both a chest xray and a brain scan today. We should get the results tomorrow. Im scared. It seems like he takes one step forward and two steps back. The altered mental state and the nightly fevers are causing the doctor some concern and she can't explain them (hence further tests). Im not sure what is a result of sepsis and what could indicate a further issue and I feel like I need to be prepared im case my mum loses it and needs some support. Anyone have a similar experience or can shed any light?

Hi,
I’m so sorry you’re going through this.

I had sepsis three years ago, I don’t remember much of it tbh, I do remember the extreme sleepiness (could not stay away) and I did hallucinate a bit in intensive care (thought I’d been abducted by aliens) ...

It was different because I was 25 and reasonably healthy BUT they thought I was going to die, and here I am, full recovery.

The antibiotics thing is really important, as they were giving me generic ones for a while which didn’t work, it wasn’t until they cleared the source of the infection (abdominal) and got the results for which anti biotics I specifically needed that I started to turn the corner.

I’m very sorry your family are going through this. The Sesis trust has really good resources.
Is he in intensive care?

Sorry to hear you are going through this OP it is a really scary illness. My dad had it last year (70yrs) and was in hospital for over three months until he finally got home. He too really doesn't remember a lot of it which weirdly gives me comfort as seeing someone you love that poorly is horrendous.

As PP said finding the right antibiotic is the most important thing and once that kicks in the improvements start slowly. Sounds like that's what the Drs are focussed on now.

I wish I could tell you more but you just have to trust the Drs and keep looking at that count and hope it gradually comes down. Wishing the best for you and your family.

He is in a high dependency ward but not intensive care. Tuesday was the scary day when he was in mortal danger. Now it seems to be a case of getting on top of the infection, but the confusion and hugh fevers despite antibiotics are wprrying the doctors. They are starting oral as well.as intravenous antibiotics. Thanks for sharing your experience - lovely to hear a sucess story.

Gosh, how awful for you OP. I have nothing useful to add but thinking of you and wishing you the best

I don’t know if this will help but I had sepsis about 3 years ago (as a result of mastitis). I was in intensive care for 3 days and was pretty ill! I’m here now , made a full recovery.
Fx for your dad, he’s in the best place

My MIL had a perforated bowel 5 years ago that resulted in sepsis. The whole family was told that her chances of surviving was very slim. She spent a couple of weeks in icu and 5 weeks in high dependency then 4 weeks on a ward.
During her time in high dependency she was like a different person. Deep depression, constant hallucinations and very strange thoughts. For example she was convinced that the nurses where conspiring against her. She gat it in her head that she owed a gunman £5k to the point where I had to pretend to transfer the money to him. She would tell me that potatoes and mushrooms where dancing on her bed.
Five years on she can’t remember icu but remembers all the strange thoughts and hallucination. It was an awful time but she is fully recovered. I am so sorry you are going through this

so sorry you're going through this. A woman I worked with had sepsis just over a year ago. She was just under 50 I think reasonably healthy but quite overweight. She was misdiagnosed as having Gastro enteritis and then fl and by the time it was properly diagnosed she had multiple organ failure. She also had various other issues - as a result of surgery to try and find the source of the infection. They never found the cause of the infection but the "last chance" broad spectrum antibiotic managed to get it. She was in ICU for weeks and the ward for weeks after that. All in all maybe 4 months in hospital, then home but with a lot of help from her SiL (fortunately lived next door and was home during the day) and her husband and teenage children. She couldn't walk without a frame and not far even with that and took a while to get mentally back to where she was.

She returned to work recently - (her job is admin so nothing physical) I think she must have had a bout a year off in total. She now seems just like she was but obviously it was a long recovery.

I hope your DF is able to fight off the infection and come back home to him as soon as possible.

Thank you, it helps to hear similar stories.

My husband (also 56) had very severe sepsis in March. He was in intensive care for 3 weeks - 2 of those weeks he was in a coma on full life support. He had major organ failure and between this and the infection he had (necrotising faciatis (dodgy spelling)) he only had a 1% survival rate.

He’s currently sitting opposite me on the sofa after being in hospital for 5 months.

He did have really bad hallucinations whilst on strong drugs (fentanyl). And was quite confused for a few weeks after which is apparently very common with sepsis. I did worry that he was not going to be the same person because his behaviour was odd but it passed after a few weeks and he was back to normal.
Hope he improves soon. Fingers crossed for you.

My Dad (78) had this 2 years ago. He was so poorly we were all called to the hospital as he wasn't expected to last the night. He was hallucinating and having very random conversations but eventually rallied. He had 2 weeks in ICU, 3 weeks in HDU, then another 4 weeks in a ward with strict visiting hours and strict infection control. He has now recovered (although he still has health issues) and doesn't remember the first 3 weeks at all. His consultant still says he's a miracle.

Good luck. I hope your Dad improves very soon.

These stories are amazing! I should have mentioned, he isn't on any drugs that can cause the confusion or hallucinations. I checked with the dr today. Its so horrible.

I hope your dad improves soon OP

Hi, sorry to hear he is so unwell. My partner has had bowel cancer twice in the past (he is now 44). This year in April he was getting lot of pain down his right arm and shoulder, put it down to nerve pinching. He also had migraines and has had bladder issues following his last cancer.

In the space of a couple of weeks he went downhill quickly, GP said it was chest infection even after i listed a whole load of symptoms (not seeing clearly, confusion, falling over, unable to basically function to name a few). Anyway 2 days later i called 999 as he colapsed, it was kidney failure. This changed his personality for about a week, he was aggressive to the point they sedated him for 3 days. He was confused, hallucinating and just generally not himself, i was actually worrried about brain damage.

He was released but still wasnt great, he kept falling over and having what looked like fits. 2 weeks later 999 again this time it was sepsis (btw he had seen gp at least 3 times before the call to 999). Had antibiotics and that seemed to help alot, no more falling over etc. The recovery has been slow, had utis ever since.

I hope they can get to the bottom of it for you. Nobody could really explain to me how his personality was so effected but as he recovered the better he got. They did a brain scan but didnt see anything. Sorry this might not be helpful to you at all.

I hope your dad recovers soon, keep pushing the docs for answers

My DH was in hospital for six weeks last Christmas - he was initially diagnosed with sepsis and double pneumonia and put on IV antibiotics. The first two weeks we felt were one step forward, two steps back. He was in and out of consciousness and had constant fevers, it was so frustrating as just when we thought he was getting better, he would get another fever and get confused again, he was in constant pain.

After a chest drain, multiple CT and MRI scans they found the infection was on a heart valve, which was why he wasn’t improving much. Within two days of getting onto the right antibiotics he was really on the road to recovery.

I’m so sorry you’re going through this, it’s so scary and I remember the frustration of seeing little changes, but the main thing is your dad is being taken care of and they’re still trying to find all the answers.

My daughter had sepsis 2 years ago. She was already in hospital being treated for leukaemia and was on chemo. Someone gave her swine flu which developed into sepsis! She had the most bizarre hallucinations and severe seizures (she’s epileptic and the antibiotics blocked her seizure medication). She has very hazy memories of it and was seriously ill for 2 weeks.
Hope your dad feels well soon

My DH had sepsis earlier this year not as severe though. He had an operation 2 weeks prior and woke up feeling dizzy. He later told me he had collapsed on his way to the toilet. I left him to sleep and went out. When I came back he was hot to touch but said he felt cold, really disoriented and in a lot of pain He can't remember the conversation we had but I forced him to phone NHS 24 because he wouldn't let me do it and he was seen within the hour. They pumped him full of antibiotics etc and rushed him to surgery as his wound was swollen.

When he was in the disoriented state and in A&E he was quite combative but the next day when I went to see him he was his usually happy self but still not very well and he was pale and his skin was a weird texture. He was very lucky.

I hope your Dad gets better soon, High temps can cause odd behaviours and hallucinations. I used to work with the elderly and if they had a UTI or infection they could be quite horrible to people around them and they appeared to be seeing and hearing things. It was really tough for the family.

Cathster that sounds exactly like my dad. I wonder if they might find a secondary infection?

My dad aged 84 had sepsis. His bp was 73/37 and we were told this would lead to all his organs shutting down and he was unlikely to survive the night. He did and he left hospital a few weeks later (he had other complications too). Good luck OP and dad

Hi, I’m a nurse. It sounds like he has a ‘delirium’, a sudden onset of confusion. It’s quite common but isn’t particularly well understood. It often happens as a result of infection, drugs, dehydration and even constipation can cause it! It’s more common in older adults. The good news is that delirium is generally temporary and settles down on its own. It can last a few days or even a few weeks.

As a relative, it’s helpful for you to encourage him to drink (bring things from home if you think he’ll prefer it or squash), encourage him to eat. Try not to make his worries any worse but humour him like pud1, fat kinder and more reassuring to pretend to transfer the money than to insist that there was no gun man!

He may need a period of respite or help at home short-term but I would think it’s most likely this will settle down. Hope that helps a bit.

My Dad had it and has recovered completely. Getting the right antibiotics was key.

Hoping for a good outcome for you.

FIL had sepsis following a UTI that went bad ways. In hospital he had a very scary allergic reaction to the antibiotics, after being fine with them for the previous 70 years. While he was in hospital, he described symptoms which worried the doctor, and he was diagnosed with prostate cancer a few weeks later. He's fully recovered from the sepsis and responding well to treatment for the cancer, so while it was a scary time, it brought to light something which really needed attention.

It may well delirium. He is drinking well and eating small amounts, but has had diorrhea for several days until they gave him something to stop it yesterday.

My father nearly died of sepsis aged 65 -he was diabetic, heavy smoker, heart problems (pacemaker etc), and spent five weeks in ICU with most organs failing, had stroke(s) as side effect of sepsis and spent another 4 or 5 months in hospital, coming out bed-bound (needed to be hoisted into wheelchair), fed through a tube to his stomach etc but over the next 12-18 months, with intensive physio, lots of support from my mother and a huge amount of stubbornness he got back to walking short distances, eating normally and so on. Still has after-effects now but is still alive and in his 80s. Sadly, his younger, fitter brother died of sepsis in his 70s while going through chemotherapy.

Just to add - my father has had a few episodes of delirium, due to sepsis and later bouts of pneumonia, but they were temporary, though scary at the time.