I had cancer operation and got sepsis afterwards. Nearly died. Put in induced coma during which time I got sepsis again, multiple organ failures, multiple brain bleeds, internal bleeding, a blood clot, a superbug and serious cat 4 pressure wounds. In ICU for 125 days, in hospital total of 305 days. Got PTSD from ICU stay. Been home five months. Limited mobility, walk with frame. Left hand is rubbish. Peripheral neuropathy in both feet and down sides of legs. And hand.
Got to go in hospital for minor procedure and stay overnight tomorrow. Everyone keeps saying it’s no big deal but it is to me. Completely shit scared. Of being sedated and the association with my PTSD dreams, memories and flashbacks. And bring back in an environment I felt I would never escape from and where I wasn’t always cared for particularly well. Got strategies from my psychologist but can’t say they are helping me to feel ok about tomorrow at all.
Anyone else feel like this?
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ElleEmBee
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Thanks for getting back to me. I’ve already cancelled once because I was too scared and they cancelled it last time so I think I’m on the last road in terms of postponing it. My husband is taking me but he had zero insight into why I’m so upset so he’s not that helpful tbh. I will definitely be talking to the staff but I just don’t have that much trust in them because of previous experiences.
Just gonna have to grit my teeth and hope for the best I think.
completely understandable @ElleEmBee - Ive had numerous overnights/weeks/ procedures & treatments since my 90 day ICU stay six years ago. My experience on the wards was less than perfect I agree.
I also feared I would n ver get out since I picked up numerous infections whilst in hospital, many whilst in ICU.
Cancer ( I have a leukaemia/lymphoma)diagnosis probably dictates a lot of hospital visits and we do have to figure out how to cope with them.
Most of the time I was ok but if they tried to do a procedure/biopsy my body would physically go into shock - my brain wasn’t worried or so I thought… nothing we can do about it apart from just going with it…I used to warn the staff of my past story so that they were aware if I started behaving irrationally or out of sorts - I needed to give them context because I felt embarrassed by how my body betrayed me.
Hi, I fully understand your feelings and fears and the reasons for them. Our ICU/PTSD experiences are in many respects very similar. Please take some comfort from the fact that other people empathise. One thing that helped me before my third operation was talking to ward manager - senior nursing sister - about my fears and anxiety, she was brilliant. Along with a psychologist and my consultant, she helped me to put things in place that ensured that when I was in POCCU, I was able to have a say in the sort of care I received. I have a dread of any form of physical restraint and let them know that this will never be acceptable to me, whatever the circumstances. Expressing this helped resulted in me being given reassurance.My advice would be to discuss your feelings and concerns as assertively as possible.
hi, thanks for getting back to me. I went in hospital Monday and pretty much sobbed all the time I was there. The anaesthesiologist was really kind and took the time to hear about my fears and he talked me through how he planned to keep me safe. When I woke up from the surgery there was a really kind nurse looking after me. They let me go home that night instead of making me stay over which I am so thankful for. Pretty exhausting experience all round. Can’t say it has eased my mind about ever having to do it again but at least I know I tried it once and managed to get through it somehow.
What you are experiencing is absolutely “normal” what ever that means! Unfortunately family and friends don’t understand.
It’s coming up to 3 years since I came out. I had to go for a cataract operation. It was through the nhs but with a private company. I wasn’t bothered about the op even though it was on my eye it was having a local anaesthetic that was the problem.. I was tearful , anxiety levels shot out the roof, tears extra. The staff were excellent, they supported me, put my slot back one and I had the op. I have to go up to the hospital for regular appointments, going through the front door is fine. No way will I go through A&E.
Because of coming out just as lock down started I had absolutely no support. I paid for CBT (11 sessions) this enabled be to build strategies and now I watch ambulance and other hospital programs. I haven’t developed a strategy for A&E yet. I don’t have emotional filters which can be a problem - not for me - but for others.
Apart from echoing everyone else’s sympathy with your fears the only thing Inwould out to you is “Are you more afraid of the procedure you are going to have done or what would happen to you if you didn’t have the procedure done” Fear of a repeat performance and all of the experiences associated with that are understandable by those of us who have live through this sort of thing and it would be all to,easy to,let this fear totally dominate any rational response to the fear. I was told that there was a 5 per cent chance of me dying as a result of my operation. I was in the unlucky 5 per cent but also in the fortunate positi9n that I was revived without as much damage as could well have occurred. And I realised that this figure would then be changed for the next prospective patient to 6 per cent and that as much as we look on the positive side things in life and medicine are never as certain as we would like them to be.It sounds as if you have more or less made your mind up to go through with. Maybe the best thing to concentrate on is what is NOT going to happens as a result,of the procedure.
hi. I was more scared of being in hospital and the possibility of getting more dreams due to the ptsd I got from ICU stay. I wasn’t concerned about the procedure at all. I’m glad I did it but it scared the shit out of me.
yes surviving ICU is one of those things that divides people into two groups, Thise who have and those who haven’t. And when you have it is with you for the rest of your life. You may well recover but you neve know home much and it takes so long you never know how many of the lasting effects are just down to aging but you can never unlive the experience.You are marked!
I understand completely and share your fear. Going back in the hospital is my number one fear. My experience was very similar to yours and I was left with severe PTSD. I try to tell myself that another hospital experience won’t be the same as the nightmare experience I had. I had been in hospital on earlier occasions and my experiences were not as traumatic and I try to hold onto the hope that my next stay won’t be like my last one. Your fear is understandable and valid but you will get through this. Keep us informed on how you’re doing.
Thank you. I got through it as in I survived it but I sobbed pretty much all the time I was there. My husband and carers kept telling me I know it’s not the same so I have nothing to worry about. I kept saying yes I KNOW it’s different but I don’t FEEL different about it no matter how many times you try to fight me with logic, I know it makes no logical sense but I am scared regardless. The only person who got it was my psychologist. I kinda wish he could do a talk on ptsd to my network because they exhaust me trying to logic me out of my feelings.
I had a lot of issues , sepsis pneumonia, collapsed lung, acute renal failure, step A, heart attack, Neuropraxia in both arms and one foot. I like you am more than scared of getting ill again, I ware a FFP level 3 mask if I go for check ups, and Physiotherapy, go into crowded places. We necand my partner do not go out at all other than shopping as I have so much anxiety overly catching something. I don’t no what the answer is as I can’t see a normal life coming back. I hope you find peace somehow. Best wishes.
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Value and Meaning of ICU Garden/ Hospital Outdoor Space
And the doctors treated me like I was crazy !!
I am beginning to wonder if the coronavirus has been active much longer than admitted?
Am I feeling normal or is this a new normal? 
