1. < Intensive Care (ICU)
Moderator

Post-Intensive Care Syndrome (PICS) - Let's talk

Posted by Colleen Young, Connect Director @colleenyoung, Jan 13, 2017

Have you heard of Post-Intensive Care Syndrome? Sometimes it's called post ICU syndrome or PICS. PICS is defined as new or worse health problems after critical illness. These problems can affect your mind, body, thoughts, and/or feelings.

On Connect we would like to bring together people who have been affected by critical illness, and hopefully lighten the burden you bear. Patients and family members welcome.

Grab a cup of tea, or beverage of your choice, and let's chat. Why not start by introducing yourself?

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

Moderator
Lisa Lucier, Moderator | @lisalucier | Jul 27, 2018

I believe you all have met @rosemarya in this discussion on PICS. Thought you might enjoy reading today's Mayo Clinic Connect member spotlight, featuring Rosemary: https://mayocl.in/2K25PrL.

REPLY
Becky | @beitel | Jul 27, 2018
In reply to @rosemarya "When I spent 5 days in ICU with sepsis, dehydration, acute kidney failure, and endstage liver..." + (show)
@rosemarya

When I spent 5 days in ICU with sepsis, dehydration, acute kidney failure, and endstage liver disease, I was in and out of awareness. I was sometimes halfway aware of my surroundings, or activities happening to me and around me (only if I was moved, or a sudden noise). I have a partial recollection of the people and of the procedures. But I had no context time.
I have a vague recollection of being flown to another hospital. And arriving there. Although not in ICU, I was on the transplant floor at Mayo Methodist, and for the first few days, I continued to be in and out of awareness.
Later on, when I asked my husband, who is my caregiver, to explain to me what had occurred, I was shocked. So much had occurred that I didn't even realize. And on top of that , my memory of it, was all jumbled. For a while this really bothered me. But now, as time has passed, (8 years) it is not a concern to me, anymore.
Rosemary

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Once I get a Kidney I am sure we will celebrate that Anniversary. The waiting for the call is so hard.

REPLY
Moderator
Colleen Young, Connect Director | @colleenyoung | Jul 27, 2018
In reply to @rosemarya "When I spent 5 days in ICU with sepsis, dehydration, acute kidney failure, and endstage liver..." + (show)
@rosemarya

When I spent 5 days in ICU with sepsis, dehydration, acute kidney failure, and endstage liver disease, I was in and out of awareness. I was sometimes halfway aware of my surroundings, or activities happening to me and around me (only if I was moved, or a sudden noise). I have a partial recollection of the people and of the procedures. But I had no context time.
I have a vague recollection of being flown to another hospital. And arriving there. Although not in ICU, I was on the transplant floor at Mayo Methodist, and for the first few days, I continued to be in and out of awareness.
Later on, when I asked my husband, who is my caregiver, to explain to me what had occurred, I was shocked. So much had occurred that I didn't even realize. And on top of that , my memory of it, was all jumbled. For a while this really bothered me. But now, as time has passed, (8 years) it is not a concern to me, anymore.
Rosemary

Jump to this post

Hi @beitel I invite you to follow the Transplants group. https://connect.mayoclinic.org/group/transplants/

In this group you can connect with addition members waiting for a kidney and recipients, along with @rosemarya mad @2011panc, who can share their wisdom and experiences.

REPLY
ejs001 | @ejs001 | Jul 27, 2018
In reply to @rosemarya "When I spent 5 days in ICU with sepsis, dehydration, acute kidney failure, and endstage liver..." + (show)
@rosemarya

When I spent 5 days in ICU with sepsis, dehydration, acute kidney failure, and endstage liver disease, I was in and out of awareness. I was sometimes halfway aware of my surroundings, or activities happening to me and around me (only if I was moved, or a sudden noise). I have a partial recollection of the people and of the procedures. But I had no context time.
I have a vague recollection of being flown to another hospital. And arriving there. Although not in ICU, I was on the transplant floor at Mayo Methodist, and for the first few days, I continued to be in and out of awareness.
Later on, when I asked my husband, who is my caregiver, to explain to me what had occurred, I was shocked. So much had occurred that I didn't even realize. And on top of that , my memory of it, was all jumbled. For a while this really bothered me. But now, as time has passed, (8 years) it is not a concern to me, anymore.
Rosemary

Jump to this post

A very good book

is  You will Get Through This by Max Lucado

 

REPLY
2011panc | @2011panc | Jul 27, 2018
In reply to @rosemarya "When I spent 5 days in ICU with sepsis, dehydration, acute kidney failure, and endstage liver..." + (show)
@rosemarya

When I spent 5 days in ICU with sepsis, dehydration, acute kidney failure, and endstage liver disease, I was in and out of awareness. I was sometimes halfway aware of my surroundings, or activities happening to me and around me (only if I was moved, or a sudden noise). I have a partial recollection of the people and of the procedures. But I had no context time.
I have a vague recollection of being flown to another hospital. And arriving there. Although not in ICU, I was on the transplant floor at Mayo Methodist, and for the first few days, I continued to be in and out of awareness.
Later on, when I asked my husband, who is my caregiver, to explain to me what had occurred, I was shocked. So much had occurred that I didn't even realize. And on top of that , my memory of it, was all jumbled. For a while this really bothered me. But now, as time has passed, (8 years) it is not a concern to me, anymore.
Rosemary

Jump to this post

@beitel Thank you for responding to me. The yoga exercises I do are to improve my intestinal function and balance; maintain or regain flexibility; practice controlled breathing; and build stamina.
Here are a few of the poses I practice often: (1) The Cobra has you lie on your stomach, relax your entire body, place your hands under your shoulders, raise your head and shoulders as high as you can and hold that position for 20 seconds (a slow count to 20 or as long as you can) before relaxing. Repeat three times making sure to keep all movements slow and controlled. There are variations to this exercise but this is a good way to start. (2) The Compete Breath has you sit (floor or chair), stand or lie on your back (whatever is most comfortable for you to complete the exercise. Again you relax your entire body, begin breathing in through your nose -- filling the bottom of your lungs first (your stomach should expand), the middle of your lungs second (your ribs should expand and the top of your lungs last (your chest should expand); hold, and then reverse the inhale for the exhale, breathing out through pursed lips. Your goal is take 20 seconds to breath in, another 20 seconds to hold, and 20 seconds to exhale. (3) The Lunge begins standing (or sitting on a chair) with your feet shoulder width apart, turn your left foot to face the wall on your left side, turn your torso to face that wall and step out so that your left knee is bent but keep your shin vertical. Make this step as large as possible to stretch the right leg and work the muscles of the left leg. Hold for 20 seconds and relax to the beginning position. Then repeat for the other side. Make sure to sit or lie quietly for 5 minutes to concentrate on your body parts and how everything feels.
It is okay for your mind to wander and race until you have more healing. I highly recommend 5 minutes of meditation before bedtime to help you process the day, calm yourself and prepare for sleep. Lie down, close your eyes and relax every part of your body beginning at the top of your head. Once your toes are relaxed clear your mind and focus on one thing. That one thing can be darkness, a candle flame, a white marble or any one thing you prefer. You may drift off to sleep during this time and that is okay. My son gets anxious and frustrated at work and often has trouble falling asleep. This works for him and helps him meet the next day with a fresher and better frame of mind. This 5 minute meditation can be done sitting in a chair during the day also. It is a 5 minute break that will refresh you better than a cigarette, walk or cup of coffee.
For books, my favorite author is Steven King, so I have read almost everything he has written. If you do not like horror, though, I also like mysteries. I have trouble with my memory, so I will have to look through my books for names of other authors I have read and post that later.

REPLY
Mentor
Teresa, Volunteer Mentor | @hopeful33250 | Jul 28, 2018
In reply to @rosemarya "When I spent 5 days in ICU with sepsis, dehydration, acute kidney failure, and endstage liver..." + (show)
@rosemarya

When I spent 5 days in ICU with sepsis, dehydration, acute kidney failure, and endstage liver disease, I was in and out of awareness. I was sometimes halfway aware of my surroundings, or activities happening to me and around me (only if I was moved, or a sudden noise). I have a partial recollection of the people and of the procedures. But I had no context time.
I have a vague recollection of being flown to another hospital. And arriving there. Although not in ICU, I was on the transplant floor at Mayo Methodist, and for the first few days, I continued to be in and out of awareness.
Later on, when I asked my husband, who is my caregiver, to explain to me what had occurred, I was shocked. So much had occurred that I didn't even realize. And on top of that , my memory of it, was all jumbled. For a while this really bothered me. But now, as time has passed, (8 years) it is not a concern to me, anymore.
Rosemary

Jump to this post

@2011panc

I appreciate your Yoga exercise, meditation and reading ideas. I found a Youtube demonstration of the Cobra position if anyone is interested in seeing a demonstration on just how it is done. Here is the link, https://www.youtube.com/results?search_query=cobra+yoga+exercise
Teresa

REPLY
Mentor
Rosemary, Volunteer Mentor | @rosemarya | Jul 28, 2018
In reply to @rosemarya "When I spent 5 days in ICU with sepsis, dehydration, acute kidney failure, and endstage liver..." + (show)
@rosemarya

When I spent 5 days in ICU with sepsis, dehydration, acute kidney failure, and endstage liver disease, I was in and out of awareness. I was sometimes halfway aware of my surroundings, or activities happening to me and around me (only if I was moved, or a sudden noise). I have a partial recollection of the people and of the procedures. But I had no context time.
I have a vague recollection of being flown to another hospital. And arriving there. Although not in ICU, I was on the transplant floor at Mayo Methodist, and for the first few days, I continued to be in and out of awareness.
Later on, when I asked my husband, who is my caregiver, to explain to me what had occurred, I was shocked. So much had occurred that I didn't even realize. And on top of that , my memory of it, was all jumbled. For a while this really bothered me. But now, as time has passed, (8 years) it is not a concern to me, anymore.
Rosemary

Jump to this post

@beitel, I hope your labs turn up some information that will lead to more information for you.
Hugs,
Rosemary

REPLY
marystefy | @marinelastef | Aug 3, 2018

Hello ! I’m looking for other patients who had occipital nerve blocks go wrong, I also had deviated septum surgery with turbines cleaned and cut, tissue removed, 2 nostril nerve blocks and left ear damaged. Since all this happened I go through severe burning, numbness, stinging, spasms, breathing and walking problems. It’s horrible what symptoms you can experience after so many procedures that did more harm than good. I know doctors had theirs best intentions to help my spasms but unfortunately I’v got worse as years passed by . Can someone give me an idea where to go and what can I do to alleviate these excruciating symptoms ? Please help , thank you so much !!

REPLY
7 replies
Texas Freedom | @oregongirl | Aug 3, 2018

My heart goes out to you. I am sure someone will respond. I am so frightened to have any surgery. They wanted to put concrete in a collapsed vertibrae and it took them two days to talk me into it. I hear all the side things of surgery and can't stand the thought of any of it. Good luck and God be with you

REPLY
Mentor
Rosemary, Volunteer Mentor | @rosemarya | Aug 6, 2018
In reply to @marinelastef "Hello ! I’m looking for other patients who had occipital nerve blocks go wrong, I also..." + (show)
@marinelastef

Hello ! I’m looking for other patients who had occipital nerve blocks go wrong, I also had deviated septum surgery with turbines cleaned and cut, tissue removed, 2 nostril nerve blocks and left ear damaged. Since all this happened I go through severe burning, numbness, stinging, spasms, breathing and walking problems. It’s horrible what symptoms you can experience after so many procedures that did more harm than good. I know doctors had theirs best intentions to help my spasms but unfortunately I’v got worse as years passed by . Can someone give me an idea where to go and what can I do to alleviate these excruciating symptoms ? Please help , thank you so much !!

Jump to this post

@marinelastef, Good Morning. I want to say "Welcome" to Connect. As a patient, myself, I am unfamiliar with the symptoms and the medical issues that you have described. I want to help you to find someone who might be familiar and able to assist you to find some information. In the meantime, I want to suggest that you look at some of the other GROUPS (top left of this page) on Connect and create a post there. Does that make sense?
I will see what I can find in the meantime.
Rosemary

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