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?

@ethanmcconkey

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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Thank you. I dont know the eyes sore and tired bugs me the most as i am a diamond grader.
Not caused by anything around me but the symptoms i mentioned are all recent and after icu

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@seanne

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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I had never heard of PICS before reading about it in this group. I now realize what I experienced was PICS. Since December of 2018, I was in the ICU 3 times. The first 2 times were due to kidney failure and afterwards did not have any problems. In February of 2019 I received my liver transplant with a MELD score above 40. I had 2 cardiac arrest episodes during the surgery because a blood clot hit my heart. I was not conscious for several days after surgery. Once I woke I could not speak (tracheostomy without the plug in), lift my hands, couldn’t stand without 3 people holding me up, on a feeding tube and oxygen. I had double vision off and on and my hearing was not very good (fluid in my ear). I also had vivid dreams. My ICU stay was 12 days before being moved to the liver floor. I had many complications after the move and spent a total of 6 weeks in the hospital and another 3 weeks in a rehabilitation hospital. I experienced many of the issues noted by others in the group. The dreams mixed with reality, most all of my muscles had atrophied and were extremely slow to recover especially in my legs. I still could not stand up when discharged. The best thing was going to the rehabilitation hospital and slowly being able to stand and eventually walk. They taught me how to use a walker, roll-a-tor and learn basic skills to take care of myself such as stepping down steps or getting into a vehicle. I continued to go to outpatient PT for 3 months. I know I the complications increased my stay, which were unexpected. Knowing details ahead of time may have helped me realize what was happening after surgery and release from the ICU. It was scary not knowing why my body and mind were not working properly. I am doing well now, just had my 4 months checkup.

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Hi there. This is my first time on this blog. I wasn't even aware of this this site until yesterday, a year after I was released from 6 weeks in ICU with another 2 weeks in a regular room. I know nothing of this as I was either in a coma or fighting (without my knowing I was) for my life. I am so sorry for all who suffer from this very real syndrome. I started crying when I started reading your posts. I have all the symptoms and and truly thought I was crazy. I hope to learn from you all and maybe I can help in some way too.

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@smoky

Hi there. This is my first time on this blog. I wasn't even aware of this this site until yesterday, a year after I was released from 6 weeks in ICU with another 2 weeks in a regular room. I know nothing of this as I was either in a coma or fighting (without my knowing I was) for my life. I am so sorry for all who suffer from this very real syndrome. I started crying when I started reading your posts. I have all the symptoms and and truly thought I was crazy. I hope to learn from you all and maybe I can help in some way too.

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Welcome to the discussion @smoky – I am glad you found us! You will likely see by reading through the many posts on here your feeling of being "crazy" is shared by so many others. Just knowing there are others out there – many others in fact – who have experienced what you are experiencing can be healing in itself. What are some of the symptoms of PICS that you are experiencing if you feel open to sharing with us?

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@smoky

Hi there. This is my first time on this blog. I wasn't even aware of this this site until yesterday, a year after I was released from 6 weeks in ICU with another 2 weeks in a regular room. I know nothing of this as I was either in a coma or fighting (without my knowing I was) for my life. I am so sorry for all who suffer from this very real syndrome. I started crying when I started reading your posts. I have all the symptoms and and truly thought I was crazy. I hope to learn from you all and maybe I can help in some way too.

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I’m so glad you found this blog! It does help to hear from others who have gone through liver transplants. I hope you are feeling much better about what you experienced during your recovery period.

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@smoky

Hi there. This is my first time on this blog. I wasn't even aware of this this site until yesterday, a year after I was released from 6 weeks in ICU with another 2 weeks in a regular room. I know nothing of this as I was either in a coma or fighting (without my knowing I was) for my life. I am so sorry for all who suffer from this very real syndrome. I started crying when I started reading your posts. I have all the symptoms and and truly thought I was crazy. I hope to learn from you all and maybe I can help in some way too.

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Welcome! I'm new to this community too. Thank you for sharing a piece of your story. I know that this page has already offered me a glimpse of hope, as I now know that I'm not alone. I hope that you can experience this too. Take care.

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@andreab

Welcome to the discussion @smoky – I am glad you found us! You will likely see by reading through the many posts on here your feeling of being "crazy" is shared by so many others. Just knowing there are others out there – many others in fact – who have experienced what you are experiencing can be healing in itself. What are some of the symptoms of PICS that you are experiencing if you feel open to sharing with us?

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Hi Annie. I ended up in the ICU from a horrible reaction to a pain med. prescribed for severe back pain. After 6 six weeks,some of the symptoms of PICS that I have are hallucinations or memories of the ones I had while in ICU (I don't know which), severe short term memory loss, the ability to speak sentences in the correct order only if I can think of the words, pain, dizziness, walking with a cane after using a wheel chair then walker, now cane, headaches. That's all I can think of at the present. I ended up with a trachea that after speaking with the doctors will remain for life. I am hoping to speak with "someone" at the hospital to set up or produce a pamphlet or something to give to those who are subjected to this syndrome. I think it would be a more proactive way to deal with this than to let the patient or family have to endure the side effects of the ICU.

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@smoky

Hi Annie. I ended up in the ICU from a horrible reaction to a pain med. prescribed for severe back pain. After 6 six weeks,some of the symptoms of PICS that I have are hallucinations or memories of the ones I had while in ICU (I don't know which), severe short term memory loss, the ability to speak sentences in the correct order only if I can think of the words, pain, dizziness, walking with a cane after using a wheel chair then walker, now cane, headaches. That's all I can think of at the present. I ended up with a trachea that after speaking with the doctors will remain for life. I am hoping to speak with "someone" at the hospital to set up or produce a pamphlet or something to give to those who are subjected to this syndrome. I think it would be a more proactive way to deal with this than to let the patient or family have to endure the side effects of the ICU.

Jump to this post

@smoky, I applaud your efforts to inform staff at the hospital to help inform patients. It is quite possible that staff are not fully aware of PICS (Post Intensive Care Syndrome). The Society for Critical Care Medicine has resources to help develop resources for hospitals and clinics https://www.sccm.org/MyICUCare/THRIVE

@andreab, ICU Nurse Practitioner at Mayo Clinic, writes a blog describing PICS for patient, families, and health care professionals here on Connect:
– Post Intensive Care Syndrome (PICS) https://connect.mayoclinic.org/page/pics/

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Hi there, since i last posted i have been out of icu now 3 weeks, still weak but back at work 2 weeks. I still get chest and back pain but i think its from the acid reflux. Throat still sore from tube and funnily enough i have broken out in sores that look like pimples all over im assuming this is because my immune system still low. But on the up side im.alive and get to see my boys every day considerring the doctors did not think i would make it. My attitude to life has changed dramatically and my only thing i need to work on now is my anxiety after icu…. that is my biggest struggle at the moment. Pls tell me this is normal

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@cindyvag

Hi there, since i last posted i have been out of icu now 3 weeks, still weak but back at work 2 weeks. I still get chest and back pain but i think its from the acid reflux. Throat still sore from tube and funnily enough i have broken out in sores that look like pimples all over im assuming this is because my immune system still low. But on the up side im.alive and get to see my boys every day considerring the doctors did not think i would make it. My attitude to life has changed dramatically and my only thing i need to work on now is my anxiety after icu…. that is my biggest struggle at the moment. Pls tell me this is normal

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Many people experience anxiety after ICU. I'm hoping @seanne will share more with you.

@andreab writes more about it in this blog
* Breaking it Down: Post Intensive Care Syndrome and Recovery – Emotions https://connect.mayoclinic.org/page/pics/newsfeed-post/breaking-it-down-post-intensive-care-syndrome-and-recovery-emotions/

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@colleenyoung

Many people experience anxiety after ICU. I'm hoping @seanne will share more with you.

@andreab writes more about it in this blog
* Breaking it Down: Post Intensive Care Syndrome and Recovery – Emotions https://connect.mayoclinic.org/page/pics/newsfeed-post/breaking-it-down-post-intensive-care-syndrome-and-recovery-emotions/

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Dear Colleen and Cindy,
I'm happy to do anything I can to help @cindyvag understand and cope with anxiety. So Cindy, here's for you.
First, please understand that I'm no expert on this. I'm just a fellow ICU survivor who, like you, was badly blindsided by critical illness and its aftermath.
Having previously never been seriously ill, I had no context for the anxiety, fear and other troubling emotions I felt afterward. And that lack of context was itself anxiety-producing. Would I recover? How much? Would the pain ever go away, and how long would that take? I'm sure you can relate.
Now, more than a year out, I've developed a couple of coping analogies. I live on the West Coast and have experienced several very serious earthquakes (including one that injured me slightly many decades ago when I was just 4 years old; I still remember the terror of it). With no warning, the earth suddenly shakes; the rumbling sound is overwhelming. You're thrown seriously off balance. You have no control. And you don't know if more quakes are coming that potentially could kill you.
People who live through multiple quakes come to understand that anxiety is a NORMAL psychological after-shock, a classic "fight or flight" response that nature has programmed into all of us as a survival mechanism.
We PICS survivors are like earthquake survivors — traumatized first physically, then psychologically. Unfortunately it's both normal and terribly unsettling as we worry through every "after-shock" — tiredness, fogginess, physical changes and most certainly anxiety. I think this anxiety is basically our nervous system's "fight or flight" reaction to the tremendous trauma we've been through.
But there's one significant difference between earthquakes and ICU after-shocks. In earthquakes everyone goes through the event together, thus they can relate and support each other.
But it's so different for us. Our traumas are individual, isolated, and afterward we can look OK although we're not…at least not in the first months afterward. That's why an online support group like this is so important. Do please keep checking back in and asking questions of the other "earthquake survivors" — the people who understand what you're going through when others don't.
My other mental image of anxiety is of driving through fog. You know how fog can seem thinner, then get thicker, then thinner again as you drive along? Anxiety is like that, too.
Right now your anxiety is "thick" because you're just out of the hospital, your body is weakened and you don't know what to expect. Going forward you'll probably have days when your anxiety is "thin" and you're inclined to think hooray! It's over!
But this may be followed by other days when you start out good then something triggers you (the sound of an aid car siren will do it for me) and your anxiety gets "thick" again.
And unfortunately some days it's thick from the start and stays thick. So psychological recovery can be baby steps, some forward, some backward, for quite a long time. But eventually "the fog" does lift.
My advice, if you want it (up to you): Be easy on yourself. Take it slow. You're reacting normally to an abnormal event.
Don't expect too much, even when others around you might be expecting you to be "healed by now." As a woman this means delegating to others chores that you'd normally do — and doing so with no guilt. None!
Realize that recovery isn't an event. It's a process.
One last thing. You mentioned that you've developed pimple-like sores on your body. I did, too. Turned out it was a drug reaction to a strong, new medication I needed to take post-ICU. My doctor switched me to a different med, and the problem was solved. But it took that switch to fix things.
I wish you all the best, Cindy. I'm sure there's a whole army of ICU survivors who'd link arms and give you a big, comforting hug if we could. So here's a "virtual hug." Can you feel it?

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@seanne

Dear Colleen and Cindy,
I'm happy to do anything I can to help @cindyvag understand and cope with anxiety. So Cindy, here's for you.
First, please understand that I'm no expert on this. I'm just a fellow ICU survivor who, like you, was badly blindsided by critical illness and its aftermath.
Having previously never been seriously ill, I had no context for the anxiety, fear and other troubling emotions I felt afterward. And that lack of context was itself anxiety-producing. Would I recover? How much? Would the pain ever go away, and how long would that take? I'm sure you can relate.
Now, more than a year out, I've developed a couple of coping analogies. I live on the West Coast and have experienced several very serious earthquakes (including one that injured me slightly many decades ago when I was just 4 years old; I still remember the terror of it). With no warning, the earth suddenly shakes; the rumbling sound is overwhelming. You're thrown seriously off balance. You have no control. And you don't know if more quakes are coming that potentially could kill you.
People who live through multiple quakes come to understand that anxiety is a NORMAL psychological after-shock, a classic "fight or flight" response that nature has programmed into all of us as a survival mechanism.
We PICS survivors are like earthquake survivors — traumatized first physically, then psychologically. Unfortunately it's both normal and terribly unsettling as we worry through every "after-shock" — tiredness, fogginess, physical changes and most certainly anxiety. I think this anxiety is basically our nervous system's "fight or flight" reaction to the tremendous trauma we've been through.
But there's one significant difference between earthquakes and ICU after-shocks. In earthquakes everyone goes through the event together, thus they can relate and support each other.
But it's so different for us. Our traumas are individual, isolated, and afterward we can look OK although we're not…at least not in the first months afterward. That's why an online support group like this is so important. Do please keep checking back in and asking questions of the other "earthquake survivors" — the people who understand what you're going through when others don't.
My other mental image of anxiety is of driving through fog. You know how fog can seem thinner, then get thicker, then thinner again as you drive along? Anxiety is like that, too.
Right now your anxiety is "thick" because you're just out of the hospital, your body is weakened and you don't know what to expect. Going forward you'll probably have days when your anxiety is "thin" and you're inclined to think hooray! It's over!
But this may be followed by other days when you start out good then something triggers you (the sound of an aid car siren will do it for me) and your anxiety gets "thick" again.
And unfortunately some days it's thick from the start and stays thick. So psychological recovery can be baby steps, some forward, some backward, for quite a long time. But eventually "the fog" does lift.
My advice, if you want it (up to you): Be easy on yourself. Take it slow. You're reacting normally to an abnormal event.
Don't expect too much, even when others around you might be expecting you to be "healed by now." As a woman this means delegating to others chores that you'd normally do — and doing so with no guilt. None!
Realize that recovery isn't an event. It's a process.
One last thing. You mentioned that you've developed pimple-like sores on your body. I did, too. Turned out it was a drug reaction to a strong, new medication I needed to take post-ICU. My doctor switched me to a different med, and the problem was solved. But it took that switch to fix things.
I wish you all the best, Cindy. I'm sure there's a whole army of ICU survivors who'd link arms and give you a big, comforting hug if we could. So here's a "virtual hug." Can you feel it?

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Thank u soooooo much seanne, u so right on many levels… wish more ppl would understand

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REPLY
@seanne

Dear Colleen and Cindy,
I'm happy to do anything I can to help @cindyvag understand and cope with anxiety. So Cindy, here's for you.
First, please understand that I'm no expert on this. I'm just a fellow ICU survivor who, like you, was badly blindsided by critical illness and its aftermath.
Having previously never been seriously ill, I had no context for the anxiety, fear and other troubling emotions I felt afterward. And that lack of context was itself anxiety-producing. Would I recover? How much? Would the pain ever go away, and how long would that take? I'm sure you can relate.
Now, more than a year out, I've developed a couple of coping analogies. I live on the West Coast and have experienced several very serious earthquakes (including one that injured me slightly many decades ago when I was just 4 years old; I still remember the terror of it). With no warning, the earth suddenly shakes; the rumbling sound is overwhelming. You're thrown seriously off balance. You have no control. And you don't know if more quakes are coming that potentially could kill you.
People who live through multiple quakes come to understand that anxiety is a NORMAL psychological after-shock, a classic "fight or flight" response that nature has programmed into all of us as a survival mechanism.
We PICS survivors are like earthquake survivors — traumatized first physically, then psychologically. Unfortunately it's both normal and terribly unsettling as we worry through every "after-shock" — tiredness, fogginess, physical changes and most certainly anxiety. I think this anxiety is basically our nervous system's "fight or flight" reaction to the tremendous trauma we've been through.
But there's one significant difference between earthquakes and ICU after-shocks. In earthquakes everyone goes through the event together, thus they can relate and support each other.
But it's so different for us. Our traumas are individual, isolated, and afterward we can look OK although we're not…at least not in the first months afterward. That's why an online support group like this is so important. Do please keep checking back in and asking questions of the other "earthquake survivors" — the people who understand what you're going through when others don't.
My other mental image of anxiety is of driving through fog. You know how fog can seem thinner, then get thicker, then thinner again as you drive along? Anxiety is like that, too.
Right now your anxiety is "thick" because you're just out of the hospital, your body is weakened and you don't know what to expect. Going forward you'll probably have days when your anxiety is "thin" and you're inclined to think hooray! It's over!
But this may be followed by other days when you start out good then something triggers you (the sound of an aid car siren will do it for me) and your anxiety gets "thick" again.
And unfortunately some days it's thick from the start and stays thick. So psychological recovery can be baby steps, some forward, some backward, for quite a long time. But eventually "the fog" does lift.
My advice, if you want it (up to you): Be easy on yourself. Take it slow. You're reacting normally to an abnormal event.
Don't expect too much, even when others around you might be expecting you to be "healed by now." As a woman this means delegating to others chores that you'd normally do — and doing so with no guilt. None!
Realize that recovery isn't an event. It's a process.
One last thing. You mentioned that you've developed pimple-like sores on your body. I did, too. Turned out it was a drug reaction to a strong, new medication I needed to take post-ICU. My doctor switched me to a different med, and the problem was solved. But it took that switch to fix things.
I wish you all the best, Cindy. I'm sure there's a whole army of ICU survivors who'd link arms and give you a big, comforting hug if we could. So here's a "virtual hug." Can you feel it?

Jump to this post

Oh also after reading your post asked doc about chest and back pains even the sores. Sores are from the icu being in bed so long, the chest and back from reflux. Thank u so much for your reply cos i thought i was going nuts. 🙂

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REPLY

I had reflux too — possibly caused by some of the new meds prescribed after open heart surgery. It's a bit more under control now.

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@colleenyoung

@smoky, I applaud your efforts to inform staff at the hospital to help inform patients. It is quite possible that staff are not fully aware of PICS (Post Intensive Care Syndrome). The Society for Critical Care Medicine has resources to help develop resources for hospitals and clinics https://www.sccm.org/MyICUCare/THRIVE

@andreab, ICU Nurse Practitioner at Mayo Clinic, writes a blog describing PICS for patient, families, and health care professionals here on Connect:
– Post Intensive Care Syndrome (PICS) https://connect.mayoclinic.org/page/pics/

Jump to this post

Thank you so much for the information. I will be forwarding it to Admin at the hospital.

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