What did you find most surprising once you were out of the ICU?

Posted by Annie Johnson @andreab, Nov 5, 2018

Being in the ICU as either a patient or a family member is a difficult experience for most people. However, transitioning out of the ICU can be challenging as well. When either you or a family member no longer required critical care and were transferred out of the ICU, what were some of the things that surprised you the most?

@alex12119

I am new to this community and to connecting with others who have survived the ICU. Reading other's experiences has been so helpful, so thank you all for sharing. I feel so much less alone. Similar to what others have shared, what surprised me most was the lack of education on PICS upon discharge, and the continued lack of awareness from my healthcare providers. While I was still in the ICU, the psychiatry team told me my experience could be accurately described as trauma. That was the first and last time anyone checked in about how I was doing beyond my lab values and organ function. There was no follow up from that conversation, no post-ICU clinic, and most surprisingly, I had to discover PICS through my own research and bring it up to my doctors, despite presenting with flashbacks, nightmares, and other intrusive re-experiencing symptoms of my time in the ICU, in addition to having ICU acquired neuromuscular weakness that has left me using a wheelchair. I couldn't believe that all of this, including the emotional and physical effects are not only named, but common! How is there not more awareness? I'm doing my best to educate the people around me as I heal and process my own experiences, hoping that maybe I can help someone else.

Jump to this post

Welcome, @alex12119. I appreciate your advocacy with respect to PICS. More people and professionals need to understand its short and long-term impacts of people's lives. You may also be interested in these discussions:
– Post ICU Nightmares / Hallucinations https://connect.mayoclinic.org/discussion/nightmares-hallucinations/
– Post-Intensive Care Syndrome (PICS) – Let's talk https://connect.mayoclinic.org/discussion/post-intensive-care-syndrome-pics-lets-talk/

How long ago was your ICU experience? Is the acquired neuromuscular weakness reversible? How (and where) have you found support and help in managing the long-term effects of PICS?

REPLY
@alex12119

I am new to this community and to connecting with others who have survived the ICU. Reading other's experiences has been so helpful, so thank you all for sharing. I feel so much less alone. Similar to what others have shared, what surprised me most was the lack of education on PICS upon discharge, and the continued lack of awareness from my healthcare providers. While I was still in the ICU, the psychiatry team told me my experience could be accurately described as trauma. That was the first and last time anyone checked in about how I was doing beyond my lab values and organ function. There was no follow up from that conversation, no post-ICU clinic, and most surprisingly, I had to discover PICS through my own research and bring it up to my doctors, despite presenting with flashbacks, nightmares, and other intrusive re-experiencing symptoms of my time in the ICU, in addition to having ICU acquired neuromuscular weakness that has left me using a wheelchair. I couldn't believe that all of this, including the emotional and physical effects are not only named, but common! How is there not more awareness? I'm doing my best to educate the people around me as I heal and process my own experiences, hoping that maybe I can help someone else.

Jump to this post

It is very frustrating when you trying to piece it all together. Then to top it off trying to just heal inside and out and try be normal again. I have not had nightmares or hallucinations but i find im battling understanding the physical side after icu.
But i was also not told a thing for what to look out for or what to expect when i get home. I was lucky though to had made friends with the icu nurses, so i msg them to sometimes put pieces together. I do hope u get more answers

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@colleenyoung

Welcome, @alex12119. I appreciate your advocacy with respect to PICS. More people and professionals need to understand its short and long-term impacts of people's lives. You may also be interested in these discussions:
– Post ICU Nightmares / Hallucinations https://connect.mayoclinic.org/discussion/nightmares-hallucinations/
– Post-Intensive Care Syndrome (PICS) – Let's talk https://connect.mayoclinic.org/discussion/post-intensive-care-syndrome-pics-lets-talk/

How long ago was your ICU experience? Is the acquired neuromuscular weakness reversible? How (and where) have you found support and help in managing the long-term effects of PICS?

Jump to this post

Why is it that people dont understand the long and short term? Why are people so blind to the fact that you might not even be here anymore. My family were called to come say there goodbyes to me on the 17th june and yet it feels pretty much like now i am expected to be 100% physically and emotionally. I dont get the nightmares, but i often burst into tears in realizing i might not have ever seen my 2 sons again

Liked by Annie Johnson

REPLY
@colleenyoung

Welcome, @alex12119. I appreciate your advocacy with respect to PICS. More people and professionals need to understand its short and long-term impacts of people's lives. You may also be interested in these discussions:
– Post ICU Nightmares / Hallucinations https://connect.mayoclinic.org/discussion/nightmares-hallucinations/
– Post-Intensive Care Syndrome (PICS) – Let's talk https://connect.mayoclinic.org/discussion/post-intensive-care-syndrome-pics-lets-talk/

How long ago was your ICU experience? Is the acquired neuromuscular weakness reversible? How (and where) have you found support and help in managing the long-term effects of PICS?

Jump to this post

I was in the ICU in January of this year, and was discharged from the hospital in February. As for the neuromuscular weakness, we expect that it will be reversible with intensive PT. I've already come a long way in my healing, although I've also had some setbacks that factor into the weakness I still experience – in February, while still in the hospital, I fell and fractured my tibial plateau, which complicated my recovery as I couldn't bear weight on that leg. I'm starting to transition out of being in my wheelchair full time and to using a walker part time, but still have a ways to go. I have found help from the mental health treatment I was already seeking for PTSD unrelated to my PICS (that I do believe made me more vulnerable to PICS). I've received both outpatient and inpatient help in managing my psychiatric symptoms as I physically recover.

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@cindyvag

It is very frustrating when you trying to piece it all together. Then to top it off trying to just heal inside and out and try be normal again. I have not had nightmares or hallucinations but i find im battling understanding the physical side after icu.
But i was also not told a thing for what to look out for or what to expect when i get home. I was lucky though to had made friends with the icu nurses, so i msg them to sometimes put pieces together. I do hope u get more answers

Jump to this post

Thanks for your response and for sharing your experience. I'm sorry that you've encountered some of the same barriers. That's great that you have some connections to the nurses who cared for you. I find myself wishing I could talk to mine. As far as getting answers, I'm currently working on writing down everything I remember. I'm considering obtaining my medical records and asking a close friend who came to visit what she remembers to help me put those pieces together, like you said.

Liked by Annie Johnson

REPLY
@alex12119

Thanks for your response and for sharing your experience. I'm sorry that you've encountered some of the same barriers. That's great that you have some connections to the nurses who cared for you. I find myself wishing I could talk to mine. As far as getting answers, I'm currently working on writing down everything I remember. I'm considering obtaining my medical records and asking a close friend who came to visit what she remembers to help me put those pieces together, like you said.

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Thats great if you could find your records even go chat to nurses they actually very accommodating. Experiences where you dont remember is the absolute worse… i find i am in lala land so to speak trying to just figure my emotions out. The physical is even harder and i do pray you get answers and heal

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REPLY
@alex12119

Thanks for your response and for sharing your experience. I'm sorry that you've encountered some of the same barriers. That's great that you have some connections to the nurses who cared for you. I find myself wishing I could talk to mine. As far as getting answers, I'm currently working on writing down everything I remember. I'm considering obtaining my medical records and asking a close friend who came to visit what she remembers to help me put those pieces together, like you said.

Jump to this post

Hi Alex — Yes, it's helpful to create your own chronology, and getting your medical records will help a lot. I was in the ICU in January 2018. I had not been sick before being hospitalized, and it was an overwhelming shock to discover later that I'd been critically ill for days — with no memory of it. Then the after-effects were profound. Terrible weakness, confusion, exhaustion, anxiety, depression — and all completely unexpected.
Thus it was some months later before I was mentally strong enough to face seeing the official account of what had happened to me.
My records were free in electronic form — and I'm so glad I got them. That's for several reasons. First, they gave me a timeline beginning with emergency intubation in the ER and ending with discharge. Second, they gave me profound appreciation and respect for the medical professionals who round-the-clock really pulled out all the stops to save my life.
And third, they gave me important information I hadn't received when I was discharged. Neither my doctor nor my discharge papers mentioned I'd had severe sepsis and septic shock — important things to know as sepsis survivors have an increased risk for repeat sepsis. I only learned I'd had near-fatal sepsis (and acute kidney failure and other serious conditions) when I read my medical records. For my own protection I needed to know this.
And also for my own recovery. Like so many survivors I was discharged with scant follow-up. I discovered PICS on my own; I had to craft my own recovery plan because my doctors had no clue about PICS and offered no help for it. My hospital records helped me do that.
(Currently helping me is the book "After the Diagnosis: Transcending Chronic Illness" by Julian Seifter, MD and Betsy Seifter, PhD. It's really good!)
My records also helped straighten out confusing stuff. My poor family and friends had been so traumatized by my near-death that their memories were understandably unreliable to varying degrees. The records helped sort out the confusion of what really happened.
Quite by accident I discovered my hospital kept multiple sets of records. The first ones I got were the abbreviated version. Not a lot of information. Later I learned that I should ask for the complete nurses notes and the doctors notes. I did, and that's where I learned about sepsis. So if you ask for your records, make sure you get the most complete, thorough version. All the medical terms will make it heavy wading, but that's why God created Google, right? Just google the terms and you'll learn a lot.
I have next to no memory of being in the ICU, so I didn't know who took care of me. Thus I had no one to ask for when I screwed up my courage and many months later returned to see where I'd been. I needed to see it for context as I had none. I needed to see it to master the trauma I'd been through. A couple of ICU nurses kindly talked to me and reassured me. Just talking to them and hearing their compassion was so helpful! I'm glad I went back.
Finally, you might ask anyone who visited you in the ICU if they took any pictures. Two of my family members did, but they didn't want to tell me for fear of traumatizing me. I asked to see the shots anyway, and seeing myself intubated and surrounded by so much medical equipment made the situation very, very real. I could see what I went through. And I knew why I had a right to be so very grateful to be alive.
Peace and best wishes for your recovery. It will take a while, but it will come. You will be strong again.

REPLY
@seanne

Hi Alex — Yes, it's helpful to create your own chronology, and getting your medical records will help a lot. I was in the ICU in January 2018. I had not been sick before being hospitalized, and it was an overwhelming shock to discover later that I'd been critically ill for days — with no memory of it. Then the after-effects were profound. Terrible weakness, confusion, exhaustion, anxiety, depression — and all completely unexpected.
Thus it was some months later before I was mentally strong enough to face seeing the official account of what had happened to me.
My records were free in electronic form — and I'm so glad I got them. That's for several reasons. First, they gave me a timeline beginning with emergency intubation in the ER and ending with discharge. Second, they gave me profound appreciation and respect for the medical professionals who round-the-clock really pulled out all the stops to save my life.
And third, they gave me important information I hadn't received when I was discharged. Neither my doctor nor my discharge papers mentioned I'd had severe sepsis and septic shock — important things to know as sepsis survivors have an increased risk for repeat sepsis. I only learned I'd had near-fatal sepsis (and acute kidney failure and other serious conditions) when I read my medical records. For my own protection I needed to know this.
And also for my own recovery. Like so many survivors I was discharged with scant follow-up. I discovered PICS on my own; I had to craft my own recovery plan because my doctors had no clue about PICS and offered no help for it. My hospital records helped me do that.
(Currently helping me is the book "After the Diagnosis: Transcending Chronic Illness" by Julian Seifter, MD and Betsy Seifter, PhD. It's really good!)
My records also helped straighten out confusing stuff. My poor family and friends had been so traumatized by my near-death that their memories were understandably unreliable to varying degrees. The records helped sort out the confusion of what really happened.
Quite by accident I discovered my hospital kept multiple sets of records. The first ones I got were the abbreviated version. Not a lot of information. Later I learned that I should ask for the complete nurses notes and the doctors notes. I did, and that's where I learned about sepsis. So if you ask for your records, make sure you get the most complete, thorough version. All the medical terms will make it heavy wading, but that's why God created Google, right? Just google the terms and you'll learn a lot.
I have next to no memory of being in the ICU, so I didn't know who took care of me. Thus I had no one to ask for when I screwed up my courage and many months later returned to see where I'd been. I needed to see it for context as I had none. I needed to see it to master the trauma I'd been through. A couple of ICU nurses kindly talked to me and reassured me. Just talking to them and hearing their compassion was so helpful! I'm glad I went back.
Finally, you might ask anyone who visited you in the ICU if they took any pictures. Two of my family members did, but they didn't want to tell me for fear of traumatizing me. I asked to see the shots anyway, and seeing myself intubated and surrounded by so much medical equipment made the situation very, very real. I could see what I went through. And I knew why I had a right to be so very grateful to be alive.
Peace and best wishes for your recovery. It will take a while, but it will come. You will be strong again.

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Wow sounds like you went through alot. I hope you are much better now and may i ask how long after ICU did you begin getting stronger and back to normal? My mom said she kept a day to day diary for me but i am not ready to see it as its still very fresh for me and i want to heal fully before i see that

REPLY

It took me about 3 months. But I still have flashbacks and wonder how I survived

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REPLY
@seanne

Hi Alex — Yes, it's helpful to create your own chronology, and getting your medical records will help a lot. I was in the ICU in January 2018. I had not been sick before being hospitalized, and it was an overwhelming shock to discover later that I'd been critically ill for days — with no memory of it. Then the after-effects were profound. Terrible weakness, confusion, exhaustion, anxiety, depression — and all completely unexpected.
Thus it was some months later before I was mentally strong enough to face seeing the official account of what had happened to me.
My records were free in electronic form — and I'm so glad I got them. That's for several reasons. First, they gave me a timeline beginning with emergency intubation in the ER and ending with discharge. Second, they gave me profound appreciation and respect for the medical professionals who round-the-clock really pulled out all the stops to save my life.
And third, they gave me important information I hadn't received when I was discharged. Neither my doctor nor my discharge papers mentioned I'd had severe sepsis and septic shock — important things to know as sepsis survivors have an increased risk for repeat sepsis. I only learned I'd had near-fatal sepsis (and acute kidney failure and other serious conditions) when I read my medical records. For my own protection I needed to know this.
And also for my own recovery. Like so many survivors I was discharged with scant follow-up. I discovered PICS on my own; I had to craft my own recovery plan because my doctors had no clue about PICS and offered no help for it. My hospital records helped me do that.
(Currently helping me is the book "After the Diagnosis: Transcending Chronic Illness" by Julian Seifter, MD and Betsy Seifter, PhD. It's really good!)
My records also helped straighten out confusing stuff. My poor family and friends had been so traumatized by my near-death that their memories were understandably unreliable to varying degrees. The records helped sort out the confusion of what really happened.
Quite by accident I discovered my hospital kept multiple sets of records. The first ones I got were the abbreviated version. Not a lot of information. Later I learned that I should ask for the complete nurses notes and the doctors notes. I did, and that's where I learned about sepsis. So if you ask for your records, make sure you get the most complete, thorough version. All the medical terms will make it heavy wading, but that's why God created Google, right? Just google the terms and you'll learn a lot.
I have next to no memory of being in the ICU, so I didn't know who took care of me. Thus I had no one to ask for when I screwed up my courage and many months later returned to see where I'd been. I needed to see it for context as I had none. I needed to see it to master the trauma I'd been through. A couple of ICU nurses kindly talked to me and reassured me. Just talking to them and hearing their compassion was so helpful! I'm glad I went back.
Finally, you might ask anyone who visited you in the ICU if they took any pictures. Two of my family members did, but they didn't want to tell me for fear of traumatizing me. I asked to see the shots anyway, and seeing myself intubated and surrounded by so much medical equipment made the situation very, very real. I could see what I went through. And I knew why I had a right to be so very grateful to be alive.
Peace and best wishes for your recovery. It will take a while, but it will come. You will be strong again.

Jump to this post

It sounds like we had similar experiences – I am a severe sepsis/septic shock survivor. I’m glad I’m not the only one that tries putting pieces together by looking at records. I’ve seen several lab reports, my admitting ICU doctor’s report from the night I was admitted (to that hospital) and the reports from when I coded post ICU. I would love to get the reports from the first hospital. My husband also took notes and journaled.
Thank you for sharing – it truly helps to know there are others like me.
❤️

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@heartbreaker

It took me about 3 months. But I still have flashbacks and wonder how I survived

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3 months:( thats long… i have been out hospital for over a week and have to go back to work tomorrow and i am so anxious and scared but they dont care i got told best be back and best be positive

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REPLY
@seanne

Hi Alex — Yes, it's helpful to create your own chronology, and getting your medical records will help a lot. I was in the ICU in January 2018. I had not been sick before being hospitalized, and it was an overwhelming shock to discover later that I'd been critically ill for days — with no memory of it. Then the after-effects were profound. Terrible weakness, confusion, exhaustion, anxiety, depression — and all completely unexpected.
Thus it was some months later before I was mentally strong enough to face seeing the official account of what had happened to me.
My records were free in electronic form — and I'm so glad I got them. That's for several reasons. First, they gave me a timeline beginning with emergency intubation in the ER and ending with discharge. Second, they gave me profound appreciation and respect for the medical professionals who round-the-clock really pulled out all the stops to save my life.
And third, they gave me important information I hadn't received when I was discharged. Neither my doctor nor my discharge papers mentioned I'd had severe sepsis and septic shock — important things to know as sepsis survivors have an increased risk for repeat sepsis. I only learned I'd had near-fatal sepsis (and acute kidney failure and other serious conditions) when I read my medical records. For my own protection I needed to know this.
And also for my own recovery. Like so many survivors I was discharged with scant follow-up. I discovered PICS on my own; I had to craft my own recovery plan because my doctors had no clue about PICS and offered no help for it. My hospital records helped me do that.
(Currently helping me is the book "After the Diagnosis: Transcending Chronic Illness" by Julian Seifter, MD and Betsy Seifter, PhD. It's really good!)
My records also helped straighten out confusing stuff. My poor family and friends had been so traumatized by my near-death that their memories were understandably unreliable to varying degrees. The records helped sort out the confusion of what really happened.
Quite by accident I discovered my hospital kept multiple sets of records. The first ones I got were the abbreviated version. Not a lot of information. Later I learned that I should ask for the complete nurses notes and the doctors notes. I did, and that's where I learned about sepsis. So if you ask for your records, make sure you get the most complete, thorough version. All the medical terms will make it heavy wading, but that's why God created Google, right? Just google the terms and you'll learn a lot.
I have next to no memory of being in the ICU, so I didn't know who took care of me. Thus I had no one to ask for when I screwed up my courage and many months later returned to see where I'd been. I needed to see it for context as I had none. I needed to see it to master the trauma I'd been through. A couple of ICU nurses kindly talked to me and reassured me. Just talking to them and hearing their compassion was so helpful! I'm glad I went back.
Finally, you might ask anyone who visited you in the ICU if they took any pictures. Two of my family members did, but they didn't want to tell me for fear of traumatizing me. I asked to see the shots anyway, and seeing myself intubated and surrounded by so much medical equipment made the situation very, very real. I could see what I went through. And I knew why I had a right to be so very grateful to be alive.
Peace and best wishes for your recovery. It will take a while, but it will come. You will be strong again.

Jump to this post

Thank you for your response and for sharing parts of your story and how you have worked towards healing. The narrative of what I remember (which is quite a bit, as the use of sedation was limited, although my mental status was definitely altered at times) is my starting point. When I feel ready, I think my medical records will be helpful in further understanding what I endured and clarifying the discrepancies that have come up in what I've been told and what I remember. While I asked a few questions along the way (such as what medications I was being given and where my central venous catheter for dialysis went within my body), I also was afraid to ask many things because I was afraid of the reality that I was almost certainly going to lose my life. Between how ill I was and my sheer terror, I wasn't very talkative. A lot of things weren't explained to me. For example, the process of dialysis was explained as it happened, but the fact that I was in acute renal failure was never actually stated until I saw my discharge papers. Somehow I never put two and two together! I have a very limited understanding of things like why I experienced paralysis or why they expected my respiratory collapse and obtained consent to intubate me. I remember two of the nurses from the ICU by name, one of whom held my hand while I finally broke down and cried after it was clear that I would survive the ordeal. That gesture meant so much to me. I'd love to talk to them. Perhaps I will look into that. I definitely plan to talk to my friend who visited as well. I took some photos myself as I recovered to try and document the experience for myself, the earliest of which have come to be significant to me. They are concrete proof in a sea of hazy memories and unanswered questions. Thank you again for sharing your experience and your advice – your suggestions are helpful things to think about in my own process of healing.

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@cindyvag

3 months:( thats long… i have been out hospital for over a week and have to go back to work tomorrow and i am so anxious and scared but they dont care i got told best be back and best be positive

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Dear Cindy, I feel for you having to go back to work so soon. Being hospitalized in the ICU is exhausting and anxiety-producing. Having to go back to work so soon just magnifies that.
Does your company have a human resources department? Would it help to talk to them, especially if the person who ordered you back to work is not in personnel but instead is a direct boss?
Two other thoughts. A note from your doctor saying you need a medical leave might help.
Also helpful: printing out online information about Post ICU Syndrome and giving it to your boss. Most people have never heard of PICS and have no idea what it entails. If you give this to your boss, the boss has no excuse for holding you to the same performance standards as healthy people.
Also, giving the boss (and others at work) printed PICS info could help you build a court case in the future, should it come to that.
I consider PICS at least a temporary disability; it's illegal to discriminate against the disabled.
But I'm not an attorney so make of this info what you will.

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Hi all, i am so sorry as you can see i am new here and have millions unanswered questions.
I was wonderring if anyone here can shed some light for me.
Ive been out of icu for 7 days, i have been off the ventilator since 21st June 2019, i was on the ventilator 10 days.
I understand this was critical, i understand its going to take me a while to feel normal again.
I wish the doctors would explain why or what you would or could experience at home.
I have had the following happen the last week which i still dont understand why, and hoping others know:
Congestion
Breathlessness
Tired generally by 2pm
Sore and tired eyes
If i over do it i suddenly get dizzy
Agitation with situation and ppl around me, i have only got boys and a hubby and feel they dont really get it.
Confusion
Emotional
Ears sore
I just feel lost and no one can just say this is why u feel like this 🙁

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Hi @cindyvag you may have noticed I moved your post to this existing ICU discussion, so that all your posts would be in one place. Simply click VIEW AND REPLY in your email notification to get to your post.

That must be so frustrating and disheartening to have no one in your life understand what you are going through. I wanted to tag fellow Connect members you've interacted with some, @seanne @alex12119 and @rmftucker as they may be able to offer you support.

Back to you @cindyvag, are any of these symptoms caused by anything around you in particular?

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