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?

@contentandwell

@colleenyoung I guess I really do not feel qualified to have any helpful input to this. I was in ICU simply because they do that after transplant but it really was not much different from the care I got afterward in the transplant unit. I was just glad to be out of ICU because those rooms did not have bathrooms!
JK

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Thank you ! He is doing great now !
We wish you the best! God bless your family!

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@contentandwell

@colleenyoung I guess I really do not feel qualified to have any helpful input to this. I was in ICU simply because they do that after transplant but it really was not much different from the care I got afterward in the transplant unit. I was just glad to be out of ICU because those rooms did not have bathrooms!
JK

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@lupedelarosa12 Wonderful news, I am so happy for your son and the whole family. He must be so happy to be beginning the rest of his life. We have a friend whose daughter had a heart transplant in her early 20s and is now about 50. She has been doing great all of those years, has had a couple of children and no problems. It’s amazing how successful these heart transplants are.
JK

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@andreab

After you or your loved one was transferred out of ICU and no longer considered “critically ill,” what was the one thing that surprised you the most?

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In all honesty, I do not even remember being in ICU. I know I was there because I have been told about it. I was told there was a problem with my central line and it had to be moved. The very first thing I remember after surgery was getting up to sit in a chair and trying to take a few steps. I wanted to walk further but they made me sit down after only about 3 steps because my blood pressure was plummeting. That may have been in the ICU, but I am not sure. The next time I woke I was in my regular room. Two things that surprised me most were how much worse I felt than I had anticipated and how difficult it was to take all the medications. I expected it to be bad because I was accustomed to post-op pain, but the pain, weakness and debilitation were much more than I had ever experienced before. At the end of the first year post-op I was relieved to have discovered additional health issues that had been masked by my pre-transplant condition. That might sound odd, but you cannot treat what you don’t know you have.

Liked by Annie Johnson

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@andreab

After you or your loved one was transferred out of ICU and no longer considered “critically ill,” what was the one thing that surprised you the most?

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@2011panc You are bringing back memories. I too was surprised at how miserable I was initially. My husband kept reminding me that I had just had major surgery, what did I expect? I felt like “why did I do this?” and he kept saying “no more lactulose”. I really was in a lot of pain while in the hospital. I lay awake one night and was in so much pain that I had tears running down my cheeks. When the nurse came in on a routine check and found me that way she chided me and told me to not let it get that bad, she would have given me another dose of pain reliever but I was trying hard to limit the pain meds. I was a bit stiff and all after I came home and did continue to take oxycodone before bed but I got off of that as quickly as possible since they said as long as I was still taking it I could not drive. From that point on my recovery was smooth and I was so happy to have my new liver, and new life.
I’m sorry to hear you have other conditions also. So far I seem OK on that front, just two bad knees. I was supposed to have a knee replacement in May but I have postponed it. I really cannot stand the thought of being inactive again.
JK

Liked by Annie Johnson

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@andreab

After you or your loved one was transferred out of ICU and no longer considered “critically ill,” what was the one thing that surprised you the most?

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Thank you @contentandwell. I don’t remember what pain medications I was on, but I always get back to acetaminophen only as soon as possible because I already have damaged kidneys. My husband gave me a hard time about looking rather grim and sour. I guess I did. My son mentioned that I wasn’t smiling anymore. I think they expected me to be my happy, driven self sooner than it happened. It is different for everyone. I’m just glad to have the quality of life I have and grateful for the loving family that honored their child’s gracious desire to donate organs.

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@contentandwell

@colleenyoung I guess I really do not feel qualified to have any helpful input to this. I was in ICU simply because they do that after transplant but it really was not much different from the care I got afterward in the transplant unit. I was just glad to be out of ICU because those rooms did not have bathrooms!
JK

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Thats is such a blessing to hear , my son is doing good and recovering real well, but im so happy it is all over with and now to look foward , and continue to pray that he doesn’t reject , so far all looks good , our hardest thing is eating right low sodium , being Hispanic its hard lol , cause we are all supporting my son and eating the same , I am always going to be here for anyone going through , what we went through , just a message away 🙂 🙂 🙂

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Hi everyone. For seven months now I have been searching for something and I just don’t know what it is. I had an elective surgery on Sept 7 that went horribly wrong. I’m still recovering, if that’s what this is. I live at home with TPN each night to keep me alive. My abdomen is still healing with a wound vac from my seventh surgery since my original elective one. I was septic starting on Sept 8. I don’t remember ever waking up from the first surgery. I don’t think I ever did. I don’t remember any of the rest of the month of Sept. There are bits and pieces, but I don’t even know if they are real or not. I should be dead. That’s what the Drs said. They had written me off….Left they room at one point and told my three young daughters I would not make it. They, along with the rest of my family, were in the room as they were trying to revive me. I don’t remember any of it. Thank goodness. All I remember is darkness. Nothingness. When I became aware finally, I was paralyzed still from the meds. Couldn’t walk or talk either because of the tubes in my throat. No one told me what happened so I was very confused as to where i was and why. Every organ in my body shut down, except my heart. That went into overdrive and they couldn’t even slow it down.i guess I had several reasons to live. I still have many health issues, not even close to recovery. But, I can walk and talk again and I’m just now trying to make sense of it all. I was in the hospital initially for 68 days. Then again, off and on, since then. A week here. A few days there. Still confused. Still cry all the time. I have scars all over my body. They’ll never fade. I’m still trying to make sense of it all.
Mouse355

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@mouse355, Thank you for sharing your journey and concerns. I also had a difficult first year after transplant surgery. I had many readmissions and discovered many previously hidden health concerns. You are lucky to be alive because sepsis is life-threatening in general and more so when you are weakened from surgery. Please try to concentrate on your journey and not compare yourself to anyone else. We all have our own journey to follow. I encourage you to find out whatever you can from whoever you can to help you become more comfortable with your present situations. I encourage you to count every blessing. Many people with chronic illness and difficult surgical recoveries suffer from depression, please speak to your physicians about your crying. They may be able to help you through this. As for your scars, I also had red, angry and swollen scars far past the one year anniversary of my surgery. Now, 6 years later, they have faded to thin, pale lines. Frankly, my pregnancy stretch marks show more than my surgical scars. I consider every mark on my body a part of my warrior armor. Well-earned and a badge of honor for my fortitude. Blessings to you on your recovery.

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Wow… a year ago I suddenly developed severe nec pain and lost all feeling in my left arm. Saw an orthoneurosurgeon ad was found that I have a disease that turned my spinal Ligament to bone forcing the discs to crush my spinal cord.

Surgery was scheduled for the following week but I never lasted that long. The pain was so great and the condition so bad that I lost function of my left arm and leg and that was the last thing I remembered for a month. Wife took me to the ER and they did surgery the same night… for six hours.

After surgery, I started to bleed after the removed the breathing to to the point where they couldn’t put the tube back in and they performed an emergency tracheotomy to save my life. During that, they ended up resuscitating me for the first time. Off to the ICU and now am totally paralyzed. Two days later I start bleeding again and theybtrsucitate me for the second time.

I was in the ICU for 3 1/2 weeks. Don’t remember any of it. My issue is I am a clinician who practiced in the ICU so when I came to, it all hit me. I cried for weeks,

I am a year out and still partially paralyzed on my left side. I can’t stop talking about my issues to people. Even perfect strangers. I cry at the drop of a hat. I went back to work full time only to find that I cannot physically do the work due to the pain.

My wife just wants me to stop talking about it but I am consumed with it. I know that I have t fully dealt with it. Now I’m staring down the barrel of having to have another surgery and I am scared to death (pardon the pun). Can’t talk to my wife about it and my family and friends are tired of me talking about it.

I am seeing a counselor (just started). The ring that bothers me the most is this gap in time and memory. And the residual paralysis and pain is t helping. I’m afraid of losing my job and the change all of this means in our lifestyle. Scared only scratches the surface… the nightmares have pretty much subsided and I am filling in the gap in time with fantasy. I just make it up. I don’t know what else to say…

Liked by Annie Johnson

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@andreab

After you or your loved one was transferred out of ICU and no longer considered “critically ill,” what was the one thing that surprised you the most?

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@2011panc, when I first got the cirrhosis I was a bit depressed and my husband was pushing me to see a counselor but I did not feel that would help. I had an appointment with my PCP shortly after and he said I had “justifiable depression” and as long as it went away after not too long an amount of time then I probably did not need to see someone. I think that expression “justifiable depression” is very apt and can be true for a number of situations.
JK

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I am so glad I found this forum/thread! I thought, until now, that I was the only one who suffered from this! And it’s such a relief to give it a name, instead of thinking that I am going “crazy”!

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@andreab

After you or your loved one was transferred out of ICU and no longer considered “critically ill,” what was the one thing that surprised you the most?

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So true! I had a similar outcome, expecting to feel better afterwards, only to find out I had more health issues-less severe, but definitely masked by the previous condition. It was very discouraging to not “feel better”…

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@mouse355

Hi everyone. For seven months now I have been searching for something and I just don’t know what it is. I had an elective surgery on Sept 7 that went horribly wrong. I’m still recovering, if that’s what this is. I live at home with TPN each night to keep me alive. My abdomen is still healing with a wound vac from my seventh surgery since my original elective one. I was septic starting on Sept 8. I don’t remember ever waking up from the first surgery. I don’t think I ever did. I don’t remember any of the rest of the month of Sept. There are bits and pieces, but I don’t even know if they are real or not. I should be dead. That’s what the Drs said. They had written me off….Left they room at one point and told my three young daughters I would not make it. They, along with the rest of my family, were in the room as they were trying to revive me. I don’t remember any of it. Thank goodness. All I remember is darkness. Nothingness. When I became aware finally, I was paralyzed still from the meds. Couldn’t walk or talk either because of the tubes in my throat. No one told me what happened so I was very confused as to where i was and why. Every organ in my body shut down, except my heart. That went into overdrive and they couldn’t even slow it down.i guess I had several reasons to live. I still have many health issues, not even close to recovery. But, I can walk and talk again and I’m just now trying to make sense of it all. I was in the hospital initially for 68 days. Then again, off and on, since then. A week here. A few days there. Still confused. Still cry all the time. I have scars all over my body. They’ll never fade. I’m still trying to make sense of it all.
Mouse355

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@mouse355, Welcome to Mayo Connect. Thank you for sharing your experience with us. On Connect we share our experiences and we learn from others who have similar experiences. We are here to listen and to support each other.
Your story and your determination are remarkable. Your body has a lot of recovering yet to do. It can be a slow journey. As far as the memory part, you are not alone. It is indeed frightening and bothersome. I believe that in time, as you continue to heal and become active that they will slowly drift to the background of your daily thoughts. My experience was 8 years ago during organ failure pre transplant. I have been able to fill in some memory gaps by talking with family members, but they really don’t like to talk about that painful time. I was able to fill in some information through my medical records. I cried a lot early on. Even today, after 7 yrs, I still get emotional.
I send you peace and a hug, and strength for healing,
Rosemary

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@baceman

Wow… a year ago I suddenly developed severe nec pain and lost all feeling in my left arm. Saw an orthoneurosurgeon ad was found that I have a disease that turned my spinal Ligament to bone forcing the discs to crush my spinal cord.

Surgery was scheduled for the following week but I never lasted that long. The pain was so great and the condition so bad that I lost function of my left arm and leg and that was the last thing I remembered for a month. Wife took me to the ER and they did surgery the same night… for six hours.

After surgery, I started to bleed after the removed the breathing to to the point where they couldn’t put the tube back in and they performed an emergency tracheotomy to save my life. During that, they ended up resuscitating me for the first time. Off to the ICU and now am totally paralyzed. Two days later I start bleeding again and theybtrsucitate me for the second time.

I was in the ICU for 3 1/2 weeks. Don’t remember any of it. My issue is I am a clinician who practiced in the ICU so when I came to, it all hit me. I cried for weeks,

I am a year out and still partially paralyzed on my left side. I can’t stop talking about my issues to people. Even perfect strangers. I cry at the drop of a hat. I went back to work full time only to find that I cannot physically do the work due to the pain.

My wife just wants me to stop talking about it but I am consumed with it. I know that I have t fully dealt with it. Now I’m staring down the barrel of having to have another surgery and I am scared to death (pardon the pun). Can’t talk to my wife about it and my family and friends are tired of me talking about it.

I am seeing a counselor (just started). The ring that bothers me the most is this gap in time and memory. And the residual paralysis and pain is t helping. I’m afraid of losing my job and the change all of this means in our lifestyle. Scared only scratches the surface… the nightmares have pretty much subsided and I am filling in the gap in time with fantasy. I just make it up. I don’t know what else to say…

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@baceman, Welcome to Mayo Connect. You are in the company of others who are experiencing similar emotions. Here on Connect, we share our experiences, and we learn from each other. We support each other and offer hope. And we cry, too.
I have experienced the memory gaps from my time in ICU while critically ill. My family and loved ones are reluctant to discuss the events because , I believe, it is too painful for them. I think that while I was the patient, I was also ‘out of it’ so I was not really aware of much. On the other hand, they were very much there 24/7. They were the ones responsible for the difficult decisions, and the stressful waiting.

I hope that you and your counselor will be successful in achieving some relief for your fears and nightmares. I hop that you will be able to move toward a more normal life.
Sending you a hug and peace and strength,
Rosemary

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@baceman

Wow… a year ago I suddenly developed severe nec pain and lost all feeling in my left arm. Saw an orthoneurosurgeon ad was found that I have a disease that turned my spinal Ligament to bone forcing the discs to crush my spinal cord.

Surgery was scheduled for the following week but I never lasted that long. The pain was so great and the condition so bad that I lost function of my left arm and leg and that was the last thing I remembered for a month. Wife took me to the ER and they did surgery the same night… for six hours.

After surgery, I started to bleed after the removed the breathing to to the point where they couldn’t put the tube back in and they performed an emergency tracheotomy to save my life. During that, they ended up resuscitating me for the first time. Off to the ICU and now am totally paralyzed. Two days later I start bleeding again and theybtrsucitate me for the second time.

I was in the ICU for 3 1/2 weeks. Don’t remember any of it. My issue is I am a clinician who practiced in the ICU so when I came to, it all hit me. I cried for weeks,

I am a year out and still partially paralyzed on my left side. I can’t stop talking about my issues to people. Even perfect strangers. I cry at the drop of a hat. I went back to work full time only to find that I cannot physically do the work due to the pain.

My wife just wants me to stop talking about it but I am consumed with it. I know that I have t fully dealt with it. Now I’m staring down the barrel of having to have another surgery and I am scared to death (pardon the pun). Can’t talk to my wife about it and my family and friends are tired of me talking about it.

I am seeing a counselor (just started). The ring that bothers me the most is this gap in time and memory. And the residual paralysis and pain is t helping. I’m afraid of losing my job and the change all of this means in our lifestyle. Scared only scratches the surface… the nightmares have pretty much subsided and I am filling in the gap in time with fantasy. I just make it up. I don’t know what else to say…

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It is good you are talking to someone about it. I have not been through that much talking to others to much the entire situation makes everyone avoid they are not trained to help you. Best to talk to counselor or therapist to help you work through it as long as
they share the Christian faith. You need someone to allow you to cry, I did have my surgery and you have been
through a great deal of fighting for your life traumatic situations. You need to talk and its o.k. to get it out and
know that this is a normal reaction to what you have experienced.
Elizabeth

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