Hi everyone does anyone have advice on after care... - ICUsteps

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Hi everyone does anyone have advice on after care for icu flashbacks and help with piecing things together?

April00 profile image
April00

Hi everyone , I was wondering if anyone had any advice , to make a long story short I was in icu for around 6 weeks at the end of last year beginning of this year , I had sepsis and pneumonia. I’m struggling a lot with flashback and really trying to piece everything together, I know I was in an induced coma and they tried to wake me up once but I couldn’t breathe so I was out out again and had a tracheotomy fitted , my husband and parents have tried to help fill me in but they can only say so much because they were only been told by phone calls. While I was recovering on the ward after a dr said he was referring me somewhere or to someone that can help you piece it all together and they has access to my medical notes and icu notes . I’ve herd people talk about their icu diary ? I was never given this , is it to late to get it now ?

Thank you 😊

10 Replies

I was in ICU a year ago after getting covid it's so scary and u feel like u will die I had bad PTSD for awhile and saw bad things during covid I promise u you will get over it in time and try councillor if possible I recieved via mind charity if u need to private pm happy to chat hugs xxx

April00 profile image
April00 in reply to Picklepickle

Thank you , I’ve been referred for CBT it’s a 12 week wait but hopefully it will help . Thank you xx

Some ICUs didnt keep the diaries going during the pandemic because of fear of cross infection. You can get hold of your notes - normally via hospital website. You can also ask docs to explain your notes during follow-up clinic. I know that not all units have follow up clinics, maybe you can ask to go back to your unit at a later date. This may help you to piece together what went on.

We are all different, so some people may find more help getting identification with others who have experienced the same - a drop-in meeting for instance - it normalises the gaps in our lives.

For others, you may need professional help - whether talking therapies, CBT or EDMR - these should be accessible via GP - not all areas in U.K. offer standard help - Scotland does standardise help.

One really relevant piece of information for me was that some of the sedatives used in ICU caused retrograde amnesia - this was a revelation for me & explained why I couldn’t recall my past.

One long term legacy for me - is that I can’t always be certain what is a real memory and what isnt

April00 profile image
April00 in reply to Sepsur

Thank you it could be because of covid I didn’t my diary as it was during time when covid was high . I’ve been offered CBT the waiting list is around 12 weeks but they’ve given me access to sliver cloud online in the mean time . I do still have contact with my consultant I spoke to him for a follow up a few weeks ago , he just said it’s all normal and things will be take time , I’ve got to have another procedure done it’s only removing a stent but I just can’t face going back in to the hospital so he’s agreed to delay it for a while.

I have the same done flashback are real and some were the ‘dreams ‘ I had while under .

Thank you for your reply .

Sepsur profile image
Sepsur in reply to April00

Best of luck with your future procedures

My partner was in an induced coma for 4 weeks and in ICU for 7. He had reoccurring dreams that are very vivid and he can’t be convinced that they aren’t real. He did have a diary given to him which helped him understand what what had been happening and he’s found it really helpful. Thank goodness I was able to visit on and off (depending on covid status of hospital) so I can also give info. I also kept a diary at home for the times when I couldn’t go. Any help you can get in filling in the gaps would be helpful I feel. Keep well

Hi April. We have similar stories and like you I was in ICU with covid a year ago. I have had a series of flashbacks and as you know, they are deeply distressing. There are techniques that I have been taught that have really really helped, which help you not become trapped in the narrative of the flashback. This in turn means I still occasionally have them but they are less intense and last less time.

see link at bottom of this message. I would recommend you try and get professional help. Routes for this might be your GP ( if they are any good), contacting your critical care outreach team from hospital to see if they can offer referral to support, or a long covid clinic (again via your GP).

Finally, I run a support group. We meet fortnightly on zoom. next meet is on 23rd June at 7pm. If you want to know more, you can DM me your email and I will send you all the details. Realising you are not alone and getting tips from healthcare professionals who attend the meeting is helpful. ICUsteps chester run support group too and you can find them online.

link for flashbacks etc is

nottssvss.org.uk/wp-content...

good luck, Pete

I was in ICU for a couple of months snd have been in a specialist therapy for a year that the hospital have provided - it’s a pilot scheme though so not widely available. You definitely need professional help, the flashbacks are PTSD usually and the therapist will help you learn techniques to combat the ill effects. I’m not sure CBT is what you need however - you might want to talk to your doc about EMDR or PTSD therapy. Good luck xx

I never pieced the whole thing together and came to the conclusion it was better left that way!

There is some very helpful information to be found here too for patients and relatives about after effects of ICU. I often direct people to this site as we found it helpful. readingicusupport.co.uk/for...

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