It's not over yet ...

[gasparito]

Hi. Last December I was in ICU. The first 7 days I did ECMO, for wich they put me in a medically induced coma. I got out of it without being able to move (intensive care muscle weakness). Anyway, it took me another week in ICU and two more weeks in hospital until I was discharged. Everything has been going really well and I regained mobility, although my legs aren't still what they used to be. Since I got out of coma, I've been in a very good mood and now that I've put on weight, I do look ok. And I feel ok and Have really grateful for being alive. But recently I have realized that, although everybody (family and friends) tells me it's all gone, I feel in my mind that it's not over yet. It's as if I now have some sort of mark on me saying that I almost died. And why me? What does that mean? I feel like talking about it, but most people are not so willing to listen. Today I finally visited the doctors and nurses at the hospital. It was a strange feeling knowing that I was in that hospital in a very serious situation. When I said this, one of the doctors smiled and said "That's a minor detail." And it didn't hurt because he knows, better than anyone, how serious it was. Yet, it slightly hurts when my friends and family say "it's all over now". Should it be? I remember everything, from the moment I got into the hospital. Why do I feel like this, four months later? And they all (family and friends) do care about me. They were all very close when I was in hospital and even later. So, why do I feel like this now?

Thanks for your patient reading.

[beardy_chris]

I wonder if your hospital runs an ICU Follow-up clinic? It's worth asking. Mine does and I was told quite unequivocally that it can often take 6 - 24 months to get over a stay in ICU and, while the physical impact may be over, there can be mental and emotional impacts that can go on a long time. By definition, if you are in ICU you were close to death. It would be surprising if it didn't impact you in some way.

I'm about to start counselling to address some of the effects of my stay on ICU last year. It might be worth considering if you feel it is still affecting your quality of life.

[gasparito in reply to beardy_chris]

Thanks for reading my somewhat long story. In fact, I've been thinking of geting some psichological help. I hope everything goes ok with you.

[Videodragons]

You say: "It's as if I now have some sort of mark on me saying that I almost died. And why me? What does that mean? I feel like talking about it, but most people are not so willing to listen."

I'm surprised that they aren't willing to listen, as what you say is so interesting, clearly expressed and relevant to everyone.

I got out of ICU two years ago, after a very long stay, and am still processing the experience. Your observation will prove quite helpful in that process, I suspect.

[gasparito in reply to Videodragons]

I am glad if my words help you in anyway. Thanks for your concern.

[katiegardenhead]

Hi gasparito,

My dad was in the ICU from the 9th of November to the 18th of December 2017 - I think the same kind of time as yourself and, in my opinion, very recent. He has been out of the hospital since December 31st, so almost 5 months I suppose, and already people are expecting him and the rest of our family to have 'brushed off' the incident and put it in the past, even people who were there with us at the worst times. I really don't think that people who haven't been through this situation or haven't bee directly affected by it can truly comprehend how life-changing it is, and how it's not as simple as being able to just move on once you start recovering and regaining your health. Like you said, it leaves a huge mark on you. My dad has told me a few times that he often feels frustrated and angry that this happened to him, but also guilty for how well he is doing - his recovery has been amazing and he said this makes him wonder why he got so lucky, sometimes. Have you had the opportunity to attend any ICUSteps meetings in your local area? My mum and dad go to the one near us every time it is on and they find that it's a great help and a great support.

I was talking to a friend recently about how I still think of my dad's illness/how he almost died and how much I still worry (I live in another country to him atm) and she basically responded "Oh well, it's in the past now." I really don't think people get it unless they've been there, and it's frustrating when they don't even want to engage with you about it. I think these topics make people uncomfortable but it's unfair to deny people like you and my dad (who have been in these life-threatening, life-changing situations) the opportunity to talk about these things and share your experiences. It also opens up a lot of 'existential' thoughts, like you said, wondering why it happened to you. My dad thinks about this all of the time and I know that if he didn't have the right support it would easily put him into a very dark and lonely place.

Our ICU follow-up team also recommended counseling to my parents (separately), so that's always an option - my mum says it's not really her thing but I think it's worth giving it a go.

Wishing you all the best,

Katie

[gasparito in reply to katiegardenhead]

Thank you so much for your answer. What you described is exactly how I feel. I think friends and family just want the ordeal to be over. But it does get very lonely. I wish you and your parents all the best.

[lgt525]

I was in ICU in a medically induced coma for pneumonia just this past April. I was discharged right from ICU after being in the hospital for 14 days, twelve of them in the coma. I recuperated at home for a month and now am back at work this past week. I totally feel the same way you do. Coming this close to death and then going back to my normal routine as if nothing happened. I constantly am looking around me for clues as to why I was spared or why I am still here. But one gift from this bizarre chapter in my life is that I have a deep sense of gratitude for being here and I am not sweating the small stuff as much. This makes work much easier as I am not getting into petty power struggles or getting annoyed when things do not get done, etc. As for talking about things, I definitely would love to find a therapist. I too have found that family and friends just are glad it's all over and don't really want to talk about things. I am also have slight episodes of ptsd, where I smell hospital smells and wake up feeling like I have the oxygen mask on, etc. But all in all I am concentrating on getting my physical health back and keeping this grateful attitude while I look for some support via a therapist or a group to talk to. I am very happy that you are doing so well

[gasparito]

I am amazed by how soon you were discharged from hospital and even more surprised that you're already back to work. I couldn't have done that even if I wanted. Still, you're quite right when you say that the little annoying things of daily life don't matter so much. but, yes, there's a lot to talk about. I too am happy that you're "alive and kicking".