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

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?

@rosemarya

@elizabethbryant, Thank you for entering this discussion. The situation that I talked about was 8 years ago. I think that I, too, cried afterward, for no apparent reason. Then I would get my husband crying, because we had been through such an emotional event. I had always heard, from other people, that the drugs and trauma were part of it, but I really don’t know. Liz, how long ago was your surgery? Do you still have crying spells?
Sending you a hug, Rosemary

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@rsinger22, Yes it can be extremely difficult to be in those situations. I believe that it is okay to cry! In light of what you have endured, you have my permission to let the tears flow.
We, who are participating in the discussions on Connect do understand! Most of us have endured similar experiences, although the place, the time, the diagnosis might be different. We are here to share without judgment and to both receive and to offer support to others. I have learned a couple of things since I have been participating in these discussions: I am not alone in my struggles: it helps to talk (or write) about it; there is support for me; and I have found that I can support others and that feels good!
Remember that we do understand! we look forward to hearing from you if you would like to share.
Rosemary

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@rosemarya

@elizabethbryant, Thank you for entering this discussion. The situation that I talked about was 8 years ago. I think that I, too, cried afterward, for no apparent reason. Then I would get my husband crying, because we had been through such an emotional event. I had always heard, from other people, that the drugs and trauma were part of it, but I really don’t know. Liz, how long ago was your surgery? Do you still have crying spells?
Sending you a hug, Rosemary

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Thank you for joining us here @rsinger22. You are among people who understand. I hope that sharing in this conversation can help and heal. Welcome.

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@elizabethbryant

Sending you a big hug. My surgery was in April and I cried for no reason, the drama of it all and more surgery the doc said to come.
Then two weeks before Christmas my husband abandoned He wasn’t up for the situation
as he became confused and we think he had a stroke during my surgery days he won’t eat or drink. I turned to my faith in desperation. By the grace of God I was able not be moved emotionally when I had lunch with him and my grandchildren during Christmas. When you walk through this with the
ones you love, we are blessed. Sharing on this site. “We light each others candle” with hope and helpful medical information.

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@elizabethbryant Liz: What a great attitude you display in spite of your losses. i love the phase “We light each others candle” with hope and helpful medical information. So true of Mayo Connect! Thanks for that blessing! Teresa

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Hello, this is aechiku. I have been a nurse for 28 years, worked in Trauma ICU, Er Radiology and other critical care situations. And caring for critical patients, especially if it is very long term is very hard on the patient as well as the family and staff. I was not familiar with name of the condition mentioned before. However, The condition was there all the time. It is so stressful for the patient and family but also the staff caring for patients with life threatening or severe illness or conditions. I am glad it is being recognized and understood. God bless all who are suffering in this wa, Anita

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@milindohope83

Hello, this is aechiku. I have been a nurse for 28 years, worked in Trauma ICU, Er Radiology and other critical care situations. And caring for critical patients, especially if it is very long term is very hard on the patient as well as the family and staff. I was not familiar with name of the condition mentioned before. However, The condition was there all the time. It is so stressful for the patient and family but also the staff caring for patients with life threatening or severe illness or conditions. I am glad it is being recognized and understood. God bless all who are suffering in this wa, Anita

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Welcome Anita! We forget that ICU is hard on staff too. Grateful to have your perspective.

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Oh yes, especially if you care for them for weeks or more and it is determined that the condition that they are suffering with is never going to get better and there is little to be done except offer comfort to the patient and family. It helps them all to see familiar faces caring for them. It helps to know that you are not just a patient in a room who may never go home again from the hospital. It can be a tough job alot of the time, not just the medical care, but the emotional support. But it is the most important thing of all to offer in that that loving one on one care for all who are suffering in such a way.

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@milindohope83, Thank you, Anita, and all of those who care for patients with severe or life threatening conditions. Please know that your compassion and understanding does matter. And the memory of your kindness, continues long after the emtional event.
Hugs, Rosemary

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@elizabethbryant

Sending you a big hug. My surgery was in April and I cried for no reason, the drama of it all and more surgery the doc said to come.
Then two weeks before Christmas my husband abandoned He wasn’t up for the situation
as he became confused and we think he had a stroke during my surgery days he won’t eat or drink. I turned to my faith in desperation. By the grace of God I was able not be moved emotionally when I had lunch with him and my grandchildren during Christmas. When you walk through this with the
ones you love, we are blessed. Sharing on this site. “We light each others candle” with hope and helpful medical information.

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@elizabethbryantI whole heartedly agree that I have received many blessings since my initial diagnosis and thru to the recurrence. Most people take a step back when I say that, they think that getting cancer is the end of your life, period, weather you die or not. in one aspect they are right it is the end of life “AS WE KNEW IT”. There are so many things I am no longer able to do that were an integral part of my life….BUT….I have been blessed with TWO more grandchildren ( I was given 2-3 months ) I am really a happier person, I am more calm , all those URGENT THINGS I HAD TO GET DONE ARE NOT SO URGENT. I am calmer I am more accepting of things as they are…I have rarely said why me? I have said why not me? would I rather a young mother was suffering as I am?, absolutely not!!!! and most importantly my relationship with God has gotten so much better ,so much closer. My faith is so much stronger than it was. How can I not be happy about that?!!!
And being able to share your thoughts with someone that truly understands where you are coming from…..that is a blessing
I have a friend who also was given a terminal diagnosis and we have shared often. I expect to see him today. this will be a test of love and strength because he is very close to the end and being witness to his sadness and pain can only make me more aware of when it will be my time, he has asked to see me today ( he is often not up to visitors ) so I will go and hopefully come away with an insight I did not have and feeling blessed that I knew him.
I usually struggle to share ( I want to keep everyone around me happy) but I was so moved by your comments I felt the need. Thank You

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@kariulrich

Dear Rook, I am sorry to hear what you are going through. I have had several hospital stays that included ICU, but not nearly for the amount of time that you have been through. I do have nightmares at times that are so real and vivid that I am back at the hospital and no one can help me, I am constantly searching for my specific doctors but they are not there. They are frightening when they happen. I will read more about your experience. Thank you for sharing it.

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Thank you for asking Colleen. Yes, when I have these dreams they are so real and vivid when you finally wake up there is a sense of confusion. I am not sure where I am and if what I experienced in my dream really happened or not.. I can describe colors, smells every last detail of the dream. When I finally realize it was a dream, it still affects me for the rest of day or days. I do not know if that makes sense to anyone. I am lucky that I can express what I have gone through in my dreams with my husband, but I do not think he truly understands the impact they have. My dreams seem to pop up again when I have symptoms. So In the past year I would say they have happened only a handful of times.

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@elizabethbryant

I burst out in tears like of and on for 7 months after my surgery and care at John Hopkins, it was so morbid. It took 7 months for me to stop
and the crying didn’t start immediately after leaving the hospital. I wonder if it is a combination of the drugs and trauma

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@elizabethbryant I am so glad you mentioned the combination of drugs and trauma. I will say that when I was transferred from ICU to the vascular floor I continued to have what I describe as “night terrors” and thinking about it now scares me to tears. It was an awful experience where I felt I was caught in the middle of falling asleep and being semi-awake, and the sounds and visions were awful. I do believe the pain medication played a part, possibly a side effect. It is something I have wanted to look into, but just never have.

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@kariulrich

Dear Rook, I am sorry to hear what you are going through. I have had several hospital stays that included ICU, but not nearly for the amount of time that you have been through. I do have nightmares at times that are so real and vivid that I am back at the hospital and no one can help me, I am constantly searching for my specific doctors but they are not there. They are frightening when they happen. I will read more about your experience. Thank you for sharing it.

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I think it is very difficult for the a person to truly understand what you are going throught, the amount of stress, pain, fear of the unknown and all that goes along with the after effects of trying to survive a severe illness, accident or trauma that has been life threatening. It really effects your brain chemistry as well. All those things must heal and it takes time and understanding. Perhaps if your husband could go through therapy with you to help him understand of and deal with his fears.

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@elizabethbryant

I burst out in tears like of and on for 7 months after my surgery and care at John Hopkins, it was so morbid. It took 7 months for me to stop
and the crying didn’t start immediately after leaving the hospital. I wonder if it is a combination of the drugs and trauma

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Great insight! Yes, you are right. The pain medications are powerful, but also often produce a hallucinating effect, altered sense of reality. Some of those drugs are more problematic than others. They are great when you need them but it is not without consequences as well.

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@elizabethbryant

Sending you a big hug. My surgery was in April and I cried for no reason, the drama of it all and more surgery the doc said to come.
Then two weeks before Christmas my husband abandoned He wasn’t up for the situation
as he became confused and we think he had a stroke during my surgery days he won’t eat or drink. I turned to my faith in desperation. By the grace of God I was able not be moved emotionally when I had lunch with him and my grandchildren during Christmas. When you walk through this with the
ones you love, we are blessed. Sharing on this site. “We light each others candle” with hope and helpful medical information.

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Yes! You have evolved in that you have come to the realization that each and every moment that you can share with a loved one and let go of all the trivial things we all hang on to in out lives is what counts. It is a spiritual awakening in that you now understand the value and precious moments in life. It is a sense of freedom and peace.

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@milindohope83 I also appreciate your kind and compassionate attitude, Anita. There is no doubt in my mind that you bless your patients and their families! Teresa

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@hopeful33250

@milindohope83 I also appreciate your kind and compassionate attitude, Anita. There is no doubt in my mind that you bless your patients and their families! Teresa

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Thank you so much.  I always try to put myself in others shoes to have more empathy for their situation in  order to give the best care if i can.

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