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Post-Intensive Care Syndrome (PICS) - Let's talk
Intensive Care (ICU) | Last Active: Sep 16 7:52pm | Replies (609)Comment receiving replies
Dear Content and Well: You are my answer to my prayer. Since April I have been trying to find someone who went through the delirium. All I heard from were people who were caretakers, and my family, to tell me what people do when in delirium.
You don't know what a Godsend you are because this is something that one has to go through for anyone to believe it. I GOT mad at my husband for not coming to visit me in the hospital, but he was there everyday, I just didn't see him when I was in this state, or remember it, but he said I talked to him and answered all his questions and I was very upbeat and happy (hyper-delirium) and all I wanted to do was get out of bed and walk. And I wouldn't believe them when they said I had a knee replacement, I told them I had back surgery. (I was in denial that I need knee surgery, and I had 5 back surgeries, one of which was 4 months before the knee replacement). I don't remember this either.
I do remember falling. My feet got tangled up in the sheets when I climbed out of bed when a nurse yelled at me, and I fell on my knees to the floor. They took xrays and I was ok. This woke me up from the delirium but mind was all jumbled. They were going to tie me to the bed, which is the worst thing to do for a delirious person because they are scared to begin with, but they had a nurse with me 24 hrs round the clock.
A lot of funny things happened in my mind and what I did, but when I came to, it was the most God Awful thing that has ever happened to me.
Now I might have to have more back surgery and I don't know what to do. I am learning everything I can about this, and at the hospital, they think it was the DiLaudid they gave me for pain, and the older you get ( I am 70) the less you can metabolize the medication. But I think it was the anesthesia also. I have all my records and will inform the Doctors involved, and the hospital, what meds I took, and what kind of anesthesia I had, so this doesn't get repeated, but you cannot stop it from happening again, all you can do is inform and learn and keep yourself healthy. I was also anemic at the time, and maybe dehydrated.
I'm so glad you wrote to me, keep writing if you feel like it, and maybe we can help each other. Thanks for reaching out.
Marie
By the way, how did you find me ? I been writing to all the sites to find someone who has had this. Thanks so much. God Bless.
Replies to "Dear Content and Well: You are my answer to my prayer. Since April I have been..."
@marield65 You were in the updates that I get in email, that was how I found you.
Your delirium was much worse than mine after my knee surgery. When my husband would remind me that I couldn't get up I would sort of laugh -- sort of a "what was I thinking", but then a bit later we would go through the same thing.
I can totally sympathize with you though because your delirium was more like what I had with HE from cirrhosis. That has left me so shaken that I have a constant fear that I might be early Alzheimer's. I don't think I could deal with that diagnosis.
I have been told that there is a lesser anasthesia than General Anasthesia and while I had cirrhosis I was hoping I could get my knee done but if so I had requested NO GENERAL ANASTHESIA. The ortho surgeon said that would be fine.
JK
@rosemarya Thanks Rosemary. That is a topic I would like to pursue also. Will do that when I have more time, I am blasting through these messages because I have a lot to do right now.
JK
I might have to have back surgery and I will bring it up to the doctor about the NO General Anesthesia. I will let you know how I make out. I am scared to death to have another surgery.
Thanks so much. Marie
@marield65, @rosemarya sent you a great resource about delirium. I am going to attach some additional links to resources that I think you might find valuable:
https://connect.mayoclinic.org/newsfeed-post/post-icu-syndrome-tedx-talk/
http://www.icudelirium.org/patients.html
http://www.myicucare.org/Thrive/Pages/Find-In-Person-Support-Groups.aspx
Thank you so much
To content and well. This Marie (Marield65). What did you have when you had HE from cirrhosis? What is HE? I have more questions but I won't hit you with them all at once. Thanks...
@marield65, When you want to direct your question to a particular individual. you can highlight @name. Then copy it into your text reply. That way he/she will get a notification about the post.
@contentandwell, I want to be certain that you see the above question from Marie.
Rosemary
Thank you for your help to add the @with the name to make sure it notifies who you want the message to go to. That a big help. Marield65
@marield65 Marie, during the worst episodes I would be confused, extremely so, and non-sensical. I would put clothes on backwards, get a glass of water and then a few minutes later get another glass of water with the first one still there, lots of things like that. Even when I was having an episode that was did not leave me confused I was not myself. I lost my appetite and just wanted to sleep. I remember trying to figure out how to use the TV remote -- it was a brand new TV so part of that may have been unfamiliarity still. Thankfully none of my episodes came on quickly without warning. If I was out and felt the slightest possibility that I might be getting one I would get right home. The vast majority of times I was fine but at least once I did the smart thing. I picked some friends up at the airport and was supposed to go to dinner with them but my stomach hurt -- always a pre-episode symptom with me -- so I dropped them at their home and went home myself. Sure enough a few hours later I started getting confused.
The absolute worst episodes left me totally out of, one time I was unresponsive for hours which caused my husband to get an ambulance and have me brought to the hospital (I would not go willingly, I probably would have been a problem if the two of us were in the car). When I was in the hospital they would ask me questions to determine how my memory was functioning, like who is the president (I answered Bush, wrong of course) and what day it was. I had no idea what day it was but as I told them I was brought to the hospital totally out of it and put in a room with little or no outside input so of course I had no idea! I learned to check my Iphone in the morning to see the date and day, so I was with it enough to know strategies. I also was with-it enough to be aware of things, like the EMT said something and I corrected his grammar! Of course I would not do that normally simply because it would be rude, but at least I was aware enough to recognize his error.
Please just ask if you want to know anything else.
JK
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@marield65, I did find this link from Mayo Clinic Patient Care and Health Info / Disease and Conditions. I think you will find it interesting reading. You might want to share it with your family members.
http://www.mayoclinic.org/diseases-conditions/delirium/basics/definition/con-20033982
Rosemary