I'm new here however wanted to post my journey and express how reading other survivors stories made me realise I am not alone in this.
I was admitted to ICU on July 9th 2023 in the UK with Respiratory Failure as an effect of Covid and Pneumonia. I was immediately placed in an induced coma which lasted 2 months as my organs were failing and I was transferred to an alternative hospital for ECMO treatment (Life Support). I was ventilated and remained that way until mid January 2024. I was also filtered for my kidneys and received much medication to battle infections. My wife was told four times that I wouldn't make the night. I left ICU in early February and I was finally discharged to home this week.
There are striking similarities I read here compared to my journey, especially when it comes to Delirium and horrid dreams (I had the boat dreams and staff out to kill me along with many others). Also my current physical and mental states have a long long way to get over this and it's encouraging to see other former patients revisiting their ICU in order to obtain some closure. Thank you to everyone for sharing their story and I hope to speak with everyone in the upcoming weeks and months as I struggle to process everything.
One question I have, does anyone else feel extreme guilt by putting their family members through this trauma, even though this was something technically out of my control?
We run an on line drop in every week which throws up all sorts of attitudes. Some are convinced that the only ones that are affected in all this is them, they can be quite hostile about family & friends, others seem to be able to reconcile what went on. Others feel guilty that they survived whilst others ( more worthy) perished.
And then you come to our group who are emotionally intelligent enough to understand that we were responsible for the emotional and mental trauma our families endured but we were not to blame.
How do you unpick the guilt & remorse and put it in its proper place of regret.
I’m 8yrs out of ICU ( nearly) but have had numerous admissions since - my ICU stay was unplanned & came out of the blue…or did it?
About a year before ICU I was picking up all sorts of infections, cuts that would go septic quickly, weird unpleasant viral infections etc etc I’d not been used to being ill in anyway.
GP ran blood tests and called me back to have more extensive tests, something had been flagged - I was too busy to get back to them and eventually forgot about it.
The wake up call was in 2016 and coming to from a 57 day coma with all that you described.
The hell that my family went through….the hyper vigilance and unease that they still experience daily, the mental illness…….the legacies of ICU still play out.
If only I had gone back for that test, if only I had been vaccinated for flu, if only…..in the end I had leukaemia which was the thing that caused the landslide….where do you stop….what had caused the leukaemia….was it stress related? Was it lifestyle? The chemicals I’d worked with everyday of my working life that put a roof over our heads and food on the table…..what is the saying about life being lived backwards? How smart we would be…
If you read my story so far it’s almost a mirror image. But yes the Delirium is horrendous and I thought after my first year anniversary in Feb that was behind me but I’ve just recently slipped back into having these really bad nightmares again and I do to know why.
As for feeling guilty yes yes I worry about it and try to make amends the best I can, but my family don’t really want to talk about the episode at all, which frustrates me as I still have questions and things I want to say. I can’t imagine what they went through my children(both adults) seeing their dad on the edge of life for so long my sister and brothers and my partner who at the same time as me in ICU was in ward fighting sepsis pneumonia herself and was told I was not going to make but she was not allowed to see me All of this weighs heavily on me still but we like Sepsur says are emotionally intelligent enough to know it was not of our making
You have a long road to travel, it’s not a race it’s a slow Margate wins this race to recovery
Hi I'm so glad you're recovering and I wish you all the best. Yes I feel guilty alot as well and for the ones who didn't survive but I did,it's alot of very complex emotions
4 years ago tomorrow I was transferred to my home hospital and finally discharged on 13th into Covid. I get very emotional about what my family went through but as you say you have no control over it. Recovery at home for both you and your family is likely to take a while with many ups and downs. May I point you to the Critical Care Support Network site where you will find a range of support for both you and them.
Thank you everybody for your replies. May seem a little selfish but to know there are other people who have gone through the same processes as me makes me feel a little less helpless.
The only positive I can take from the whole situation (other than the obvious of still being alive) is that it has completely changed my outlook on life. I've neglected my wife and kids for so long with working all hours and now I need to make it up to them. Another long process but I got to keep strong for them.
I made a small donation to the CCSN last night as they look to do great work. I've also sent a contact to take part in some sessions. I feel talking about this with other people who have gone through it is going to help. And if it helps me it may help others who have gone through it. Well I hope so anyways.
as a family member whose brother went through very similar to you at a similar age inducted coma ECMO months in critical care well between there and acute ICU please don’t feel guilt we are happy to have our family member back with us. Eternally grateful to NHS and dedicated staff who cared for him. Everyone from the cleaners to the consultants. I will send you a link to our family story we wrote to provide hope to other families. My brother had 2 young children at the time. It was an experience I would not wish on anyone and it came a few months after my fit healthy husband had a stroke and he was just recovering and back driving . Family circumstances meant I was the only one who could be at ICU with my brother every day while his wife came in the evenings or weekends. She’s a nurse in NHS. We both worked full time but all I could do was to be there every day and advocate for him and reassure myself he was still there. He’s made a good recovery and do have his family and all of us. I was traumatised too by it and it took me a long time to realise that. This community was a fantastic support for us and a trusted source of advice and information.
Yes sir I was in a coma for 30 days my wife never left my side and now she has to care for me as I recover and I feel very guilty for what she has and will go through she says she has no regrets but I feel awful about it
hello, I am also new here so good to reach out to fellow survivors. The answer to your question is yes!! I feel immense guilt for everything my family went through. I am convinced it’s been far harder for them than me, I was blissfully unaware yet they were living hour by hour, also getting the calls in the middle of the night that they needed to go in as I wasn’t doing well. Did your ICU keep a diary that staff and family wrote in each day? I have one that has been so valuable for talking through all that happened, we talk about it quite a lot as everyone finds it helpful to process what happened. I think guilt is a normal emotion to feel, not necessarily warranted but normal, be kind to yourself and I hope it eases over time
Thank you, looking at your profile your journey was similar to mine. There was a diary kept whilst I was in ICU however they still have it in their records. I'm hoping to get a copy when i revisit. Talking definitely helps, beit my wife, on this forum or in the CCSN sessions which are really helpful to hear that others have experienced same as us. It's a long process but gotta work on it constantly for my family's sake.
I think I have been incredibly lucky with not having delirium, flashbacks or nightmares since waking up. I have dreamt a few times but not nasty dreams. I found waking up and the couple of weeks after really quite traumatic. I was kept intubated for 3 days following waking up, whenever I was laid flat I felt like I was drowning, really scary. I also had absolutely no way of summoning help so I found nights in particular very scary, I was as vulnerable as a new baby and wasn’t able to ask for help if I was in pain or uncomfortable. Slowly as the use of my hands returned and as my voice progressed to a whisper it became easier but my biggest issue that I’m still learning to cope with is just how vulnerable I felt. The times where that eased was when my family were with me during the day, this added to my guilt as I had so many things I needed doing whilst they were with me. I felt the guilt increase because of this but they wanted to do as much for me as possible, they at times never thought they would have the opportunity again and all they wanted was for me to get better, but most importantly be comfortable and pain free. I am normally a very independent person so I found it incredibly hard to depend on people, we found it helped a lot to just talk, talk everything through. I felt guilt at not being able to support my spouse when normally we support each other through life’s hard times. They surprised themselves by rising to the challenge and found a voice that was louder and more assertive than before. Wishing you well
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