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?

@eileena

Amanda,

You can only live life one minute at a time. Some times what you feel is from escaping a near death experience as many who have put a post here have done. Just walk as much as you can and do somethings you love doing to relieve the depression. It takes time to heal, for me it was well over a year after my Quad bypass before I began to feel better.

I'll never forget when I was awakened during the first night and being asked to do things like write my name and indicate where I hurt. While I was awake for those few m minutes a second nurse stood at the foot of my bed and asked the first nurse what made my case so important and the first nurse told that other one he did not know why I was such a priority. I was laying there thinking this "Cuz, I was about to die you ID10T" but being intubated I could not shout at him to go about his own business. I was put back to sleep and my right hand was re-restrained so that tI did not attempt to remove the tubing from my mouth.

I went back to work after 3 months and wished I'd had far more time to recuperate. I just didn't have enough sick or vacation leave to stay home.

All of life is lived one minute at a time. One day you will suddenly notice the depression is gone. BUT…let your doctors know of your depression problems.

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@eileena

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@eileena
So sorry to hear you had insufficient time to recover. You are right about living one day at a time. A NDE certainly makes one reflect on the priorities of one's life. Funny the comments about you being a priority! Unfortunately there are few who truly understand NDE and many who feel it is mumbo jumbo. Guess one has to experience it to know it. My husband was sceptical until it happened not once, but twice to him. He has a very strong faith might I add.
Trust your recovery is moving in the right direction. My husband has what he calls 'dusty' days, when things are not going so well. He always tells me he is 'good!'. I can see in his body language that he is NOT, so bless him.
Hugs to you. X

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@martha7979

@eileena
So sorry to hear you had insufficient time to recover. You are right about living one day at a time. A NDE certainly makes one reflect on the priorities of one's life. Funny the comments about you being a priority! Unfortunately there are few who truly understand NDE and many who feel it is mumbo jumbo. Guess one has to experience it to know it. My husband was sceptical until it happened not once, but twice to him. He has a very strong faith might I add.
Trust your recovery is moving in the right direction. My husband has what he calls 'dusty' days, when things are not going so well. He always tells me he is 'good!'. I can see in his body language that he is NOT, so bless him.
Hugs to you. X

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When I saw my cardiologist after I went back for my 2 week check up I mentioned the problematic fellow to him and his response was that nurses are not to make the decisions about care, doctors are the decision makers.
Also, the second night I was in ICU the assigned nurse spent most of her time with a more interesting patient and each time the alarm sounded off and I rang to get her to come as the particular machine even registered that I had no heart beat (alarming to say the least, I began to wonder if I had died and no one told me) She would eventually come, but after the 4th time I called for her the ID10T put my call button up on a shelf above my head and no way could I reach it AND she turned off the monitor instead of calling someone from the department that could have brought another of those monitors to replace the defective one.

When I checked out (the 8th day of my entire stay) the head floor nurse came to check if my stay had been good, I let her know about the assigned nurse from the second night. Needless to say she got this absolutely pissed look on her face and attempted to reassure me that would NEVER happen to another patient. I'm not sure but, due to the reputation this hospital has, I'd bet that the assigned nurse on the 2nd night was on the unemployment lines the next week.

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@martha7979

Thankyou @rosemarya ,
My husband is at home. His Dr's are unable to guarantee his problems will resolve. They tell him it will be 6 – 7 months before/IF he is likely to get anywhere near where he was prior to his complications. I have made an appointment today for him to see an Holistic GP with an interest in GI issues as fear given his ongoing loose stools and distended colon I suspect he may have malabsorption problems as he is having problems gaining weight. He remains rather anorexic althòugh that is improving slowly.
I shall check out the other groups.
Many thanks for your response and suggestions. X

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martha7979,

I am truly sorry to hear your husband is having these issues even now. I think you are making the right choice, but ask if there are any herbs you can add to his food that might help his digestive system. Those do take a long time to show results, but, after my visit to a Naturopath and his telling me about some things to add to my life for my heart problems I certainly improved, but it did take quite a while. I still do wish my cardiologist had suggested I add at least CoQ10. I take 4 supplement specifically for my heart and this may be the direction needed to help your husband.

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@rosemarya

Melissa I hated to leave the conversation the other day, but Oi needed to be somewhere away from my computer.
How are you and your mother doing?
I also want to ask how is your dad doing? He is the one that I can most relate to. I spent 5 days in ICU in Kentucky, and another 12 in critials conditiion at Mayo. For most of the first 10 days I have very little memory of what happened. Mostly random memories if events (sudden noises, being moved or lifted, needles and strange equipment, hushed voices/parts of conversations, faces that i still cannot identify, etc) After my hospital release while I was recovering, I asked my husband what had occurred during those 3 weeks. I remember how difficult it was for him to tell me about it. It was even more difficult because he and I had gone thru the same situation, but from different perspectives,. And it caused him much pain as I kept asking over and over again.
Have you considerd keeping a list of the events, the procedures, the people, the places tat your dad has had contact with during this time. If he ever asks, you will be able to provide him with it. A little peace of mind could be a huge gift for him.

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I would like to add onto @rosemarya 's comment from above and give a link that talks a little more in-depth about ICU diaries. I have found in my practice that ICU diaries are not only incredibly helpful for patients recovering, but also have a very therapeutic benefit for those writing. More info here: https://connect.mayoclinic.org/page/pics/newsfeed/around-one-third-icu-survivors-get-ptsd-but-diaries-offer-hope-for-recovery/

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@amandacgrow

I just need to hear some experiences of life after Post Intensive Care Syndrome…please tell me I will be able to move forward from this someday! I have no history of depression at all and I just feel this terrible anguish that is consuming my inner life. It is so hard because on the outside, it looks like I am back to normal…but I am totally on autopilot, living out only one hour at a time. It is so painful to have people say, "looks like you are back to 100%" and "looks like you are doing so well" when I feel like a total mental and emotional mess. I have a hard time looking ahead and making plans, even a couple of days out. I just can't seem to find anything to look forward to. How did others in this group who lived through PICS find joy in their lives again? I have so much to be joyful about and grateful for, but I just don't feel joy. I have four young children that are counting on me for emotional support as they navigate life, but I am just barely surviving myself. Any advice?

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@amandacgrow I am attaching the following link that discusses the emotional aftermath of critical illness in a bit more detail. First and very importantly – you are not alone. I have heard many people who have experienced critical illness echo exactly what you are sharing. When you look so well on the outside, people will automatically assume that you are completely recovered. And then the pressure builds on you to play that part, right? Which can very easily feed right back in to more mental anguish.

Often times physical recovery happens much more quickly because we can SEE that you are sick, hurt, weak, etc. so we aggressively address that. But we can't SEE that same exact suffering that you experience emotionally and mentally so the treatment and interventions often lag behind. I am going to be working on tagging others on this forum that can help share their insights, as well as provide you with other links/discussions/sites that might be of some help.

https://connect.mayoclinic.org/page/pics/newsfeed/breaking-it-down-post-intensive-care-syndrome-and-recovery-emotions/

Liked by amandacgrow

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@amandacgrow Hello, Amanda. I am Muriel. Annie Johnson reconnected me with the opportunity to encourage one another by posting here. In March 2016, I had a routine surgery that had an the unexpected outcome of severe septic shock. I almost died, had emergency surgery, was in a coma in ICU, and was on a respirator. My kidneys did not function, so I was on dialysis. Other organs were negatively effected. I state this only to communicate that my physical suffering resulted in emotional upset that was difficult for me. When I read your account, I decided to respond with insights that are from my experience that I call "The Event".

I am particularly impressed by your awareness of overwhelming grief. You 'hit the nail on the head' when you identified this as a part of emotional recovery after almost losing your life. I grieved at great length and wondered why it was grief that I felt. What had I lost? I was alive! Over time, I realized that I had lost life as it had previously been. I had to suddenly retire from employment; my mind made it difficult to focus, difficult to do math, difficult to access words, etc; and my heart developed a problem. But most of all, I experienced the deep grief of recognizing that I do not have the control on life and death. Fear that I would die sooner than I would have prior to "The Event", was my anguish.

Not only was my body broken, but also my inner being suffered. I found that my need for inner healing required more time than the body. This became more the case because in April 2017, I again had routine surgery and again slipped into septic shock, had emergency surgery, was in ICU, and was on a respirator. I call this "The Incident". After it, I felt not only grief but also fiery anger. I needed help. There are three or four approaches (steps) I eventually was able to take assist my inner recovery. Let me know if you would like me to share them. I do not want to overwhelm you in this initial contact with you.

Amanda, inner healing is possible. Stability in mind and Joy in heart have returned for me.
Annie, others and I will listen to you, Amanda. You are not alone to handle recovery.
Take care,
Muriel

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Murial, my sincere thanks for your reply. My ICU stay was also related to a routine medical procedure….having a baby. Just after I was moved to the recovery room, my blood pressure plummeted and I was rushed to the shock trauma ICU where I had a massive blood transfusion of over 75 units of blood. I was in a coma on a ventilator for a week and then I woke up to a whole new reality. At first this new reality was not so bad…I think because I had this incredible outpouring of support…my family actively shared my story on social media and people all over the world prayed for me. My family and I were showered with support, gifts, and even money to cover our medical expenses. I guess I saw the silver lining before I saw the clouds.

I am coming up on the one year mark and I expected it would be a wonderful celebration of life…but I am surprised that I am actually a mental and emotional mess. I really identified with what you said…."I had lost life as it had previously been" and I guess I must grieve that as I would have to grieve the loss of someone close to me.

I would be so grateful for any insight you have about healing your inner life…I really want to heal!

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@andreab

@amandacgrow I am attaching the following link that discusses the emotional aftermath of critical illness in a bit more detail. First and very importantly – you are not alone. I have heard many people who have experienced critical illness echo exactly what you are sharing. When you look so well on the outside, people will automatically assume that you are completely recovered. And then the pressure builds on you to play that part, right? Which can very easily feed right back in to more mental anguish.

Often times physical recovery happens much more quickly because we can SEE that you are sick, hurt, weak, etc. so we aggressively address that. But we can't SEE that same exact suffering that you experience emotionally and mentally so the treatment and interventions often lag behind. I am going to be working on tagging others on this forum that can help share their insights, as well as provide you with other links/discussions/sites that might be of some help.

https://connect.mayoclinic.org/page/pics/newsfeed/breaking-it-down-post-intensive-care-syndrome-and-recovery-emotions/

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@andreab Thank you so very much for your kindness and support. I so appreciate the acknowledgement of pressure building to play the part of the strong survivor who bounced back and has a new appreciation for life…it does indeed complicate recovery, even if it is all just imagined pressure I am putting on myself. Thank you for the article and just letting me know that I am not alone.

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@amandacgrow

Murial, my sincere thanks for your reply. My ICU stay was also related to a routine medical procedure….having a baby. Just after I was moved to the recovery room, my blood pressure plummeted and I was rushed to the shock trauma ICU where I had a massive blood transfusion of over 75 units of blood. I was in a coma on a ventilator for a week and then I woke up to a whole new reality. At first this new reality was not so bad…I think because I had this incredible outpouring of support…my family actively shared my story on social media and people all over the world prayed for me. My family and I were showered with support, gifts, and even money to cover our medical expenses. I guess I saw the silver lining before I saw the clouds.

I am coming up on the one year mark and I expected it would be a wonderful celebration of life…but I am surprised that I am actually a mental and emotional mess. I really identified with what you said…."I had lost life as it had previously been" and I guess I must grieve that as I would have to grieve the loss of someone close to me.

I would be so grateful for any insight you have about healing your inner life…I really want to heal!

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@amandacgrow Amanda, I will respond again tomorrow morning. Please know that I am thinking of you and am hopeful that over time you will again know joy. By the way, when you respond to me, start with: @muriel66 (note the spelling). Then write your thoughts. That way I will be notified that you posted on this website.
A Lebanese prophet (Kahlil Gibran) once wrote, "The deeper that sorrow carves into your being, the more joy you can contain. …When you are sorrowful look again in your heart, and you shall see that in truth you are weeping for that which has been your delight.”
Amanda, in time joy will return.
I will post again soon.
Muriel

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@rosemarya

@elizabethbryant, Thank you for the big hug that you send to all of us who read this message. And I send you a sincere thank you for sharing your powerful testimony of your faith and the strength that it has provided for you during your difficult journey.
I especially love what you said: ” Sharing on this site. “We light each others candle” with hope and helpful medical information.” That is our goal for our Connect conversations. We can share with others freely, without judgment. I am happy that you are part of our discussion. Rosemary

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@rosemarya
Are you aware of any support groups in Australia for PICS?

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@martha7979 where in Australia are you?

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@andreab

@martha7979 where in Australia are you?

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I am in Townsville, North Queensland. I am considering contacting the SW Dept as my husband has had three admissions to ICU. I am concerned about some of his over reactions to specific events eg sudden unexpected anxiety, sudden noises and lability that were never an issue prior. PICS was not mentioned at any stage. It all makes sense now. I would be happy to provide support for others given our experiences.

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@amandacgrow

Murial, my sincere thanks for your reply. My ICU stay was also related to a routine medical procedure….having a baby. Just after I was moved to the recovery room, my blood pressure plummeted and I was rushed to the shock trauma ICU where I had a massive blood transfusion of over 75 units of blood. I was in a coma on a ventilator for a week and then I woke up to a whole new reality. At first this new reality was not so bad…I think because I had this incredible outpouring of support…my family actively shared my story on social media and people all over the world prayed for me. My family and I were showered with support, gifts, and even money to cover our medical expenses. I guess I saw the silver lining before I saw the clouds.

I am coming up on the one year mark and I expected it would be a wonderful celebration of life…but I am surprised that I am actually a mental and emotional mess. I really identified with what you said…."I had lost life as it had previously been" and I guess I must grieve that as I would have to grieve the loss of someone close to me.

I would be so grateful for any insight you have about healing your inner life…I really want to heal!

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@amandacgrow
Hello, Amanda.
It is likely that you have little time to care for yourself, while raising young children and upholding employment. In response to your interest in ways to heal the inner-self, I tell my story. Please do not take my actions for inward healing as prescriptive, as expectation, as imposition!

To heal my inners sorrow and fear, I needed psychological care from a licensed psychologist. Though at times, I did not feel he fully understood me, it was a tremendous benefit to talk weekly with a professional, compassionate caregiver. If you were to enlist this type of care for yourself, I suggest you see someone who not only understand the inner affects of physical trauma, but also someone who acknowledges the importance of grieving. The referral to see a psychologist was made by my primary care physician in my hometown.

I need spiritual care. A hospital chaplain began that care for me, and now I am fed by being with other believers in my hometown. Spiritual care swells through the love of the congregation, who accepted the 'new me' without placing expectations on me. Though the pastor, where I worship, seems unable to accept the limitations of my 'new life', she is supportive.

I also post spiritual statements in the house for me to see and quietly repeat. These remind me of God's divine presence and strength. It is by searching God for 'the new life' God gave me, that joy slowly grows within me. I now feel like I am on a treasure hunt with God, since I now know I cannot control life. Sudden severe septic shock clearly demonstrated that to me! Anyway, my previous attempts to control life were never satisfying.

I also practice a new mental skill for me. For a while, it was difficult to do, but has become easier over time. It is the mindset of 'living in the moment'. When I am overwhelmed or agitated, I remind myself to focus only on the moment or only on the day I am experiencing. Mayo Clinic has resources that help to understand and to encourage 'mindfulness'. Perhaps Annie Johnson can give you a link to resources. It is by 'living in the moment' that joy slowly returns to your heart and mind.

There are several other possibilities, but I do not want to overwhelm you. Again, the steps I take were ones I need. Over time, I hope you will be able to tell the practices that will assist you to heal inwardly, Amanda. Let's stay in touch. I am available to support you.

May a sense of inner-peace arise within you, even if for only a moment, as you live today.
Muriel

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@muriel66

@amandacgrow
Hello, Amanda.
It is likely that you have little time to care for yourself, while raising young children and upholding employment. In response to your interest in ways to heal the inner-self, I tell my story. Please do not take my actions for inward healing as prescriptive, as expectation, as imposition!

To heal my inners sorrow and fear, I needed psychological care from a licensed psychologist. Though at times, I did not feel he fully understood me, it was a tremendous benefit to talk weekly with a professional, compassionate caregiver. If you were to enlist this type of care for yourself, I suggest you see someone who not only understand the inner affects of physical trauma, but also someone who acknowledges the importance of grieving. The referral to see a psychologist was made by my primary care physician in my hometown.

I need spiritual care. A hospital chaplain began that care for me, and now I am fed by being with other believers in my hometown. Spiritual care swells through the love of the congregation, who accepted the 'new me' without placing expectations on me. Though the pastor, where I worship, seems unable to accept the limitations of my 'new life', she is supportive.

I also post spiritual statements in the house for me to see and quietly repeat. These remind me of God's divine presence and strength. It is by searching God for 'the new life' God gave me, that joy slowly grows within me. I now feel like I am on a treasure hunt with God, since I now know I cannot control life. Sudden severe septic shock clearly demonstrated that to me! Anyway, my previous attempts to control life were never satisfying.

I also practice a new mental skill for me. For a while, it was difficult to do, but has become easier over time. It is the mindset of 'living in the moment'. When I am overwhelmed or agitated, I remind myself to focus only on the moment or only on the day I am experiencing. Mayo Clinic has resources that help to understand and to encourage 'mindfulness'. Perhaps Annie Johnson can give you a link to resources. It is by 'living in the moment' that joy slowly returns to your heart and mind.

There are several other possibilities, but I do not want to overwhelm you. Again, the steps I take were ones I need. Over time, I hope you will be able to tell the practices that will assist you to heal inwardly, Amanda. Let's stay in touch. I am available to support you.

May a sense of inner-peace arise within you, even if for only a moment, as you live today.
Muriel

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@muriel66 Thank you for your beautiful messages. I have read the messages you sent already many times…they carry so much meaning because I feel that you understand things that few others do. Last night, I read what you had written yesterday out loud to my husband. When I turned to look at him after I had finished, I saw that he had a tear running down his face. He said, "I have not known how to help you." We both feel such gratitude for your kindness in reaching out to me to give me hope for the road ahead.

I have just started seeing a professional counselor (today was my first appointment). I was very grateful that she talked to me about the process of grieving. I think she will be a good fit as a counselor, and I will be looking forward to our future appointments.

I am also grateful for your insight on spiritual healing. The depression I have been facing since mid November has made it difficult for me to feel God's spirit in the same way that I used to. I used to regularly seek God's guidance for what I could do for others. I held a leadership position in my church (I supervised all of the children's sunday school and activities). I was released from this calling just after I came home from the hospital and I have had a hard time understanding where I fit in now. I am no longer one of the people in charge, and that has been a major adjustment for me. I used to be the one who served others, then over the last year I have become the one being served. I so appreciate your insight into the very personal experience of spiritual growth, healing, and joy. I think in the busyness of my former church life, I may have been missing some of the spiritual power that perhaps I can access now, in my quieter life. I also look forward to having a "treasure hunt" with God to try to understand the purpose of my new life.

I am holding fast to the quote you sent: "The deeper that sorrow carves into your being, the more joy you can contain." I have hope that someday I will feel peace and joy in the places that now feel hollow and sad. The important thing is…thanks to your incredibly insightful messages…I have HOPE.

Thank you. Your words have meant more than you will ever know.

Amanda

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