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?

MODERATOR'S NOTE
The knowledge exchange shared in this discussion helped to create this article written for the Mayo Clinic app. Knowledge for patients by patients and beyond Mayo Clinic Connect.
- After the ICU: Advice from people who've been there https://www.mayoclinic.org/CPT-20514168

Interested in more discussions like this? Go to the Intensive Care (ICU) Support Group.

cindyvag | @cindyvag | Jul 7, 2019

In reply to @heartbreaker "It took me about 3 months. But I still have flashbacks and wonder how I survived" + (show)

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

alex12119 | @alex12119 | Jul 7, 2019

In reply to @seanne "Hi Alex -- Yes, it's helpful to create your own chronology, and getting your medical records..." + (show)

@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.

seanne | @seanne | Jul 7, 2019

In reply to @cindyvag "3 months:( thats long... i have been out hospital for over a week and have to..." + (show)

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.

cindyvag | @cindyvag | Jul 7, 2019

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 🙁

Ethan McConkey, Moderator | @ethanmcconkey | Jul 7, 2019

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?

cindyvag | @cindyvag | Jul 8, 2019

In reply to @ethanmcconkey "Hi @cindyvag you may have noticed I moved your post to this existing ICU discussion, so..." + (show)

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

flagal22 | @flagal22 | Jul 8, 2019

In reply to @seanne "Dear Cindy, I feel for you having to go back to work so soon. Being hospitalized..." + (show)

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.

smoky | @smoky | Jul 10, 2019

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.

Annie Johnson | @andreab | Jul 10, 2019

In reply to @smoky "Hi there. This is my first time on this blog. I wasn't even aware of this..." + (show)

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?

flagal22 | @flagal22 | Jul 11, 2019

In reply to @smoky "Hi there. This is my first time on this blog. I wasn't even aware of this..." + (show)

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.