Selfish questions 😔: Hello darlings!I'm going to... - ICUsteps

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Selfish questions 😔

Necky4 profile image
8 Replies

Hello darlings!I'm going to ramble. I'm still really fuckin confused and angry and flabbergast and so much older and struggling and fighting and full of questions after nearly 5 years!! I don't want to talk about the bloody positives. I want to know stuff that only we know. Am I the only poor bastard that was awake when on the ventilator?? And receiving suction 🪠? Since I had no chance of sueing the NHS, or more precisely, someone ANYONE for stuffing a load of noradrenaline in me and watching the toes turn black, WITHOUT my next of kins' permission!!? And nurses moaning about how many times I shit myself throughout their night shift?! And then being so bored with it that they went on their break and left me laying in it. Oh the joys 😂!

Why oh why do they eat and drink in front of you??! You're starving to death and sooooo thirsty that you will make EVERY attempt to drink anything. The delirium about drinking rivers right down my throat and eating a mountain of snow and drinking the fluids in my breathing tubes...ahhh...

Why don't they give your back a rub and scratch? Laying on that plastic mattress for 3 weeks and no one thinks to do that. Or drying your bits properly after your warm wet wipe slap down? The itching is unbearable. Why does the skinny little bitch skin viability slag seem to thoroughly enjoy yeilding her scalpel and scraping necrotic bits off the bottom of my left foot??

I apparently have a skin graft on my hand. Where did they get the skin from?? I don't think it was from me because I can't find a scar that big anywhere? Does anyone out there know?? I've aged by about 15 years. This is 'normal'. Can't get my core strength back ( if I had it in the first place?!!). They decided to let my necrotic toes auto-amputate, with all the fun that implies. Thing is, if the NHS don't help the people that they unintentionally harm, then there is nothing else. The benefits system doesn't make up for the whole disaster. It doesn't help me. I don't even eat properly.

After foot problems galore, we decided to amputate the damaged digits. Now I have AVN. Anyone know about this? I've read medical records and journals and bugged my diabetic multidisciplinary team about the dis-ease and there's sod all I can do about it or self help or anything... like, nothing.

Does anyone remember actually vomiting whilst still on the ventilator?!

I gotta get some kip my friends. 🫂

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8 Replies
Rhyl1 profile image
Rhyl1PartnerModeratorICUsteps

Sorry to here you had such a rough time. Noradrenaline is given in ICU to raise your blood pressure in sepsis. Without it there is not enough pressure to keep your kidneys, liver, heart and brain alive. Did you have an infection to explain the sepsis?

There’s helpful information on AVN or Avascular necrosis on gosh.nhs.uk/conditions-and-....

Necky4 profile image
Necky4 in reply toRhyl1

Thank you darling xx

CCXLI profile image
CCXLI

Hi Necky4,Sorry to hear you had a rough time and are still coming to terms with the ICU stay after several years. I'm relatively new to the journey as my ICU stay lasted from July 9 2023 to January 29 2024. During that near 7 month stay, I was in two separate comas lasting 5 weeks, had ECMO life support, ventilated via tracheostomy (4 months whilst wide awake, suctioning several times a day), experienced Delirium and nightmares, had noradrenaline for a few months to control my blood pressure and also endured all of the poo issues you mentioned. I was fed and drained through two separate nasal tubes and was also given dialysis filtering to try to awaken my kidneys and received constant ot and physio to learn how to walk, talk, eat and drink again.

As much as I am angry and frustrated by the whole process, i harbour no illwill against the NHS. I strongly believe that all treatments etc that I was given were in the best interest of saving my life and levels of care in ICU in my experience were second to none. This week my ICU doctor called me in for a follow up and she informed me that my heart was 'minutes from stopping' when i was admitted. My wife had been told on four separate occasions I would not last the night.

I felt supported when finding this forum and also the Critical Care Support Network as you can find people who have endured the same traumas as you and realising you are not alone in these issues. However I recently started seeing a therapist who is performing EMDR therapy which I find is making great strides on my mental health. I am taking online exercise classes with the CCSN and this has really helped my core strength.

I wish you all the best with your continuing recovery and hope you find the correct support to deal with the unrelentless trauma we have all endured.

Heretotellthetale_ profile image
Heretotellthetale_

hi, I am sorry you have had such a rough time. I can only share with you my experience which was being fully awake and intubated for 5 days following a coma for 12 days. It was a horrible experience and yes the suctioning was something else, I honestly felt like I was drowning pretty much the whole time. I feel really fortunate to have escaped fairly well mentally I think. While it was a totally terrifying experience I had every faith in the staff who cared for me and my family stayed with me pretty much around the clock. This really helped me feel safe but wow, the vulnerability I felt during the nights was awful as I literally had no way to summon help. No voice, even after the intubation was removed a zero movement so couldn’t use a call bell. I was in a section due to Covid so felt very alone when I was alone. Sleeping tablets when they eventually agreed gave me maybe 2 hours break from that horrible feeling over night.

In an odd way I am glad they kept me intubated while awake rather than a tracheostomy which was their next move, my family knew that would have been a huge fear of mine so they gave me a few extra days until I could cough a little, the risk of me pulling the ET tube out wasn’t there as I couldn’t move so they trialed it. It happens but apparently rare as patients with delirium will pull it out. I can’t imagine going through all that and not feeling well care for so I am sorry you did. I cannot fault my care in ICU and actually received excellent are on the wards after too, plus a great community discharge package with OT’s, physios etc. I wish you the best moving forward

Slip-Digby profile image
Slip-Digby

Oh yeah - with you there bud.

- The full gamut of ICU dreadfuls .. :( - and many many more not mentioned here: -

Awake and slowly weaned off vent, begging for some help breathing - slowly coming off the vent, quickly back on - wean on/wean off, pissed on/pissed off. Mad crazy hallucinations about the mangled & bent metal of high speed car crashes everytime I close my eyes.

'Everytime I close my Eyes' sounds like a love song. Wasn't.

The fucking evil doctor with the bedside manner of Josef Mengele - trying to kill me (except when family visit, then he is Mr. Nice Guy. Hannibal Lecter at the other times as he comes in the night to seek bloody retribution when nobody is watching.) It this real? Nobody will tell me because I cannot ask anybody because I have a tracheotomy and cannot communicate.

Maybe that telephone by my bedside is there so I can call a fucking ambulance...

'Hello, Emergency Service, which do you require?' .. 'Hello?'

"No one is coming to stop the mad Hippocratic hypocrite hit-man because you cannot speak you fucking junkie."

"Is your catheter blocked and infected?" Oh yes but until my fucking bladder explodes all over your nice new Manolos we'll just sit behind the nurse-station and watch you turn into the piss-version of Mr Creosote!

I know why you keep putting the beeping ear worm in now, haha clever, real clever .. it blocks my cellphone signal so I cannot call out to tell the world - or at least The Guardian Newspaper [failing that, me mate Dave]- about the Euthanasia and harvesting of organs for sale on AliExpress for wealthy Chinese buyers. Those with the bad kidneys and worse moral choices about where their new ones come from.

Making me promise to write you a cheque for £1000 because 'it is Christmas Eve and I would be at home with my family if I didn't have to be here looking after your junkie ass ..'

Ok I promise to be a good patient if you'll just give me a puff of o2. Not the phone company nurse, the colourless, odourless, tasteless gas essential to living organisms like me. Or me as was.

Don't know if it's 5am or 5pm. Winter you see and the clock is analogue. Morning has broken. So am I. It's dark outside but way darker in here ...

Why am I covered in bruises darling, 'oh the doctor and I had to pin you down because you kept pulling your wires and tubes and was going to kill yourself. You ended up strapped down to the bed' my then missus casually let slip.

Nurse I need to pee - I need to poo and I cannot do that in a tray. Stop feeding me I'd rather be dead than lose all dignity shitting in a saucepan.

And on and on and on and Ariston and on.

How the hell do I figure out which of this shit is real and which is full blown psychosis? There's no help for me coming home from the ICU 15 years ago. My GP thinks I'm a fucking nutcase and so do my family, when I ask them 'can you be sure they really didn't hurt me in there?' Even though when I ask the question - a very subtle look of doubt creeps across their faces, then settles there.

Fuck knows, I don't.

Raising8 profile image
Raising8 in reply toSlip-Digby

I understand this,my current was 2 years ago and I'm still convinced I wasn't out properly though I'm told I was, the dreams and hallucinations were do real to me they still plague my mind. Think this experience changes us forever. You should reach out to your GP and see if there's anyone you can talk to about it,the fact it was 15 years ago shouldn't make a difference, it's still a massive trauma.

Slip-Digby profile image
Slip-Digby in reply toRaising8

Thanks Raising8

I very much appreciate your reply. I'm afraid I have lost all faith in General Practice. The hallucinations are a strange one, coming from a history of enjoying psychedelic drugs and understanding the difference between reality and 'altered reality' that those chemical bring about. But on this forum we all know that the things we've endured in the ICU are so many more times real.

When I tripped with a great friend on Cowes sea front and watched the sun rise over Fawley Oil Refinery on a balmy summer dawn my reality was augmented, altered, enhanced and countless other mind states of boggleness...

In the ICU the doctor was trying to kill me. I remember his face, I remember his voice and his clothes and his desire to harvest bits of me, hell I even remember his damn car. He explained to me how he'd spoken to my wife and she'd mentioned how I drive a rare performance Volvo and that he drove the same car. I know where it was parked.

Six months later, when I could mobilize, I drove around the hospital car park on a daily basis looking for him and if - god help me - I'd found him (or some poor unfortunate who looked like him) I would have cleaved his head like the Nasty Goblin he was to my Thorin.

And it's just as real, in my mind today, as it was fifteen years ago.

I do so wish that there was someone, somewhere who could help me process and fix all these left over horrors but alas I think not.

Peace.XxX

Necky4 profile image
Necky4 in reply toSlip-Digby

Get some PTSD counselling. I'm the same; I dunno what was real and what wasn't! It was just shit. I can't believe we survive such bollox. It was like torture. Not being able to tell them to fuck off or dry my arse properly! They laughed at me because I was trying to dry myself and they thought I was having a wank?? Tossers.

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