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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.

Becky | @beitel | Jul 26, 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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@rosemarya -- Thank you. I have never tried doing that. I try to block things out and the busier I am the better. It is hard for me to find " calmness " or relax. I actually bought a Kayak hoping that would be some sort of relaxation. I have noticed I am feeling more depressed lately and tears just show up. My mom said that she is having a hard time also with the one year coming up, so are my kids and other family members. We are all grieving differently. Will this go away after the 1 yr mark? Our lives have changed so drastically.

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Mentor
Rosemary, Volunteer Mentor | @rosemarya | Jul 26, 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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@user_cha272278 Your story says that you are a survivor. What you have experienced and your desire to remain focused on positive outlook, are an inspiration. Hanging on to hope is like a life preserver, I like that phrase!
You bring up an interesting point about the reason for being spared. I also asked "Why" after my life was spared by a liver and kidney transplant. I have discovered that the experience gave me an entirely new perspective and awareness of the fragility of life. And an understanding that everyone is different in how they manage their own trials. I also like to use my experience to help others by sharing and listening.
Amazing, isn't it, that looking back you can say '7 short' years. Not so at the time though. Happy for you that you have overcome through your positive outlook. Keep on sharing:-)

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Becky | @beitel | Jul 26, 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

@rosemarya --There is not much known about TTp/aHUS, I have had tests done and they want to do more because it could potentially affect a new kidney. I have spoken with Dr's in Oklahoma who specialize in TTP and at the U of M. I am currently waiting for more labs and possibly genetic counseling . Noone really knows yet. These tests they do are not very " conclusive ".

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Mentor
Teresa, Volunteer Mentor | @hopeful33250 | Jul 26, 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

@user_cha272278 Hello Dr. Ron:

I agree with @rosemarya that "Hanging on to hope is like a life preserver" is a great word picture. As you may have guessed, I'm a visual learner and if you can give me a picture of a concept I can understand it.

From your previous posts, I can see that you have found many "life preservers" since your health crises. Your wife, your medical team, friends your writing and probably many more.

Keep posting about hope as a "life preservers" we all need to be reminded of that!

Teresa

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Mentor
Rosemary, Volunteer Mentor | @rosemarya | Jul 26, 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, Becky, I don't think it is possible, or even healthy, to block it out. But you can try to to think of positive or happy (like the miracle that you are alive, that you have a new kayak and all you want to discover...) It will be difficult for your loved ones, because they, also. were going thru it with you.
When I got my transplant, someone told him that we should celebrate the anniversary every year - like a birthday, or anniversary. For us that is a nice dinner somewhere. And it is always emotional, but it is a celebration for us.
If you have read some of the other posts in this PIC forum, you will have read of others who share your feelings of depression and also tears that just show up. Becky, there is no magic time fir it to go away. But it will get better as you move forward.

My suggestion is to try not to focus on the approach of 'that' day. Share with your counselor, maybe he/she has some ideas.

When are you planning to try that new kayak?

REPLY
Becky | @beitel | Jul 26, 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

Thank you for the insight. I tried my Kayak last week and it was amazing. I have been so busy dwelling on the anniversary of such a tragic thing instead of focusing on the celebration of life and healing. You really made a great point. Maybe it is something to discuss with my family also.

REPLY
Texas Freedom | @oregongirl | Jul 26, 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

I went down Rouge River with. A kayak. Of course we had our rapids coach with us. Three day trip. Good food every night. They stop at lodges every night. You can choose a caping trip. I love rafting. My husband in his ,80s rafted. He went home happy.

REPLY
2011panc | @2011panc | Jul 26, 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

@rosemarya , @beitel My transplant anniversary, my birthday and our wedding anniversary are all within three days of each other; so we were already celebrating two things, adding a third was no problem. To be honest, though, there was no celebrating the first few years because my health was so bad. Once I got my health under better control we could celebrate again.

REPLY
Ron Rubenzer | @user_cha272278 | Jul 26, 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

Thank you so much. I have constructed a heartfelt message to help folks before during and after severe medical challenges that are life changing. Peacefully accepting a “new normal” can test one’s resiliency. The small message (attached) hopefully helps others.

After almost seven years of recovery (from a broken neck, 5 week coma, sepsis, MCI) the “lights in my mind” are turning on. I had acquired ADHD from the closed head TBI, which finally is clearing up.

I know there are many folks, less fortunate than I, and I have gained far more than I have given in terms of trying to “maintain “status quo” and let IT go. (“It” being non-life-supporting attitudes, behaviors and even toxic people. ).

I was in the brain and spinal cord ward, and met a veterinarian who was incredibly positive in spite of (or maybe because of) a spinal cord injury. I learned that physical disability does not have to diminish the human spirit of “doing unto others.”

My intent in all this is to payfoward, in some way, all the compassion and care showered upon me for weeks, months and years. At long last this Humpty Dumpy IS put together again, for a Happy Ending for Life. ( PS, don’t worry, the Attached “The seven year hope” message is only 500 words long). Dr Ron. .. Make Today Count. I look forward to your reflections of hope during troubled (but temporary) waters. THANKS for allowing me to share (and Learn) from Y’all.

REPLY
2011panc | @2011panc | Jul 26, 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 have a strong faith base and have practiced yoga and meditation for a long time. These things help me keep grounded and deal with whatever comes along in life. I also suffer from depression that cycles. My worst times are usually in the winter. I had so much trauma occur during the winter holidays that I feel ruined that time of year for me. I am confident that is what causes my depression to increase at that time of the year.
As for when your grief will change, only you will know. Every person has their own journey through grief and depression is usually part of grief. Some people bury it for years with business and a stoic demeanor. Other people cannot stop crying for months or years. I encourage you to: Schedule a "sad" time every day. Plan for at least 10 minutes where you just think about your grief. Journal during your "sad" time. It can be helpful to look back after a week, month or year to see how/if things have changed for you. And lastly, focus on meeting daily needs of food, clothing, personal hygiene, and making enough money to pay your monthly bills. Blessings for your future.

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