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?

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

@chattykathy

I have thought about the question from Annie; I think the staff could have done a better job by talking about the transfer with me and getting me comfortable with the idea that I would be moved out of ICU, same floor but another room until next day. I was moved late at night and did not have same people working with me. It was strange. They needed my room for another patient who was critical and coming back from transplant surgery which I understood totally, but I needed more preparedness. It was a trust thing. When a person is blind and cannot see faces and see body language, it takes one aback at first to get use to the fact.

My husband was called back to the hospital that night to help calm my jitters and get me settled in the new room. After an hour or 2 I was OK with the idea.

I think the next day I was transferred back to the transplant floor with people I knew since I had been there previously for 3 weeks prior to surgery. Sometimes, a person needs a little extra help in getting use to things since they have been bombarded with info and trying to get it all straight. Do any of you feel the same way? I know all people are different in how they accept and process new ideas or is this a "blind" thing. It is just so overwhelming at times.

As I have had time to look back on my experiences in the hospitalizations over those particular years, I could not have had better care from all who were involved. At times, I was difficult because I was confused and could not comprehend some of the things that were going on. I hope this makes sense to everyone as I am trying not to ramble.

AS I stated before, my journey was long and complicated by the fact I was so sick prior with encephalopathy. After transplant, as the liver started filtering the toxins, my color came back and some of the confusion cleared but it took time for all of this to happen. I am sure those of you who have had liver transplant have experience the same process.

Another thing that was difficult was to know that others who I had met through the hospitality house were going home just a few days after transplant and I was stuck in the hospital. There were a lot of factors that played into my mental status at the time. Only now, while looking back, it all seems surreal.

All for now.

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My husband was working on a farm at the time I was ill. He lost work because of my many hospitalizations. We tried to find someone else to be my caregiver, but it did not work out. I told him one day he would have to be the caregiver. He did not know a lot about caregiving but learned quickly. Now he thinks he is a nurse with a degree and all. LOL.

We have been back to the ICU floor and transplant floor to say thanks to the staff including doctors. I always ask about them in my appointments with the other staff. I am amazed by the compassion and care bestowed by the Mayo employees. I just do not think I could have received better care. Many a day, while awaiting transplant, the doctors would come in to my room and hold my hand and talk to me.

The name of the hospitality house in Florida is Gabriel House Of Care. It is such a wonderful place to stay; it is our home away from home. Everyone there, employees, patients, and caregivers are always so supportive.
Until next time, CK.

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One thing I forgot to mention about my husband and caregiving; he lost his job due to being away with me so long. When we returned home, there was no job for him. In October 2011, he suffered a heart attack and his health has gone down ever since. We are a pair. He no longer works due to his health. This is one of the hardest issues we endured was his loss of work. Thanks to benefits and money raised we were able to get through it.

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@chattykathy

I have thought about the question from Annie; I think the staff could have done a better job by talking about the transfer with me and getting me comfortable with the idea that I would be moved out of ICU, same floor but another room until next day. I was moved late at night and did not have same people working with me. It was strange. They needed my room for another patient who was critical and coming back from transplant surgery which I understood totally, but I needed more preparedness. It was a trust thing. When a person is blind and cannot see faces and see body language, it takes one aback at first to get use to the fact.

My husband was called back to the hospital that night to help calm my jitters and get me settled in the new room. After an hour or 2 I was OK with the idea.

I think the next day I was transferred back to the transplant floor with people I knew since I had been there previously for 3 weeks prior to surgery. Sometimes, a person needs a little extra help in getting use to things since they have been bombarded with info and trying to get it all straight. Do any of you feel the same way? I know all people are different in how they accept and process new ideas or is this a "blind" thing. It is just so overwhelming at times.

As I have had time to look back on my experiences in the hospitalizations over those particular years, I could not have had better care from all who were involved. At times, I was difficult because I was confused and could not comprehend some of the things that were going on. I hope this makes sense to everyone as I am trying not to ramble.

AS I stated before, my journey was long and complicated by the fact I was so sick prior with encephalopathy. After transplant, as the liver started filtering the toxins, my color came back and some of the confusion cleared but it took time for all of this to happen. I am sure those of you who have had liver transplant have experience the same process.

Another thing that was difficult was to know that others who I had met through the hospitality house were going home just a few days after transplant and I was stuck in the hospital. There were a lot of factors that played into my mental status at the time. Only now, while looking back, it all seems surreal.

All for now.

Jump to this post

Thank you for your insight into what could have made the transition out of the ICU easier. Although it can be easy to, one should not underestimate the importance preparing people for such transitions of care.

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@chattykathy

I have thought about the question from Annie; I think the staff could have done a better job by talking about the transfer with me and getting me comfortable with the idea that I would be moved out of ICU, same floor but another room until next day. I was moved late at night and did not have same people working with me. It was strange. They needed my room for another patient who was critical and coming back from transplant surgery which I understood totally, but I needed more preparedness. It was a trust thing. When a person is blind and cannot see faces and see body language, it takes one aback at first to get use to the fact.

My husband was called back to the hospital that night to help calm my jitters and get me settled in the new room. After an hour or 2 I was OK with the idea.

I think the next day I was transferred back to the transplant floor with people I knew since I had been there previously for 3 weeks prior to surgery. Sometimes, a person needs a little extra help in getting use to things since they have been bombarded with info and trying to get it all straight. Do any of you feel the same way? I know all people are different in how they accept and process new ideas or is this a "blind" thing. It is just so overwhelming at times.

As I have had time to look back on my experiences in the hospitalizations over those particular years, I could not have had better care from all who were involved. At times, I was difficult because I was confused and could not comprehend some of the things that were going on. I hope this makes sense to everyone as I am trying not to ramble.

AS I stated before, my journey was long and complicated by the fact I was so sick prior with encephalopathy. After transplant, as the liver started filtering the toxins, my color came back and some of the confusion cleared but it took time for all of this to happen. I am sure those of you who have had liver transplant have experience the same process.

Another thing that was difficult was to know that others who I had met through the hospitality house were going home just a few days after transplant and I was stuck in the hospital. There were a lot of factors that played into my mental status at the time. Only now, while looking back, it all seems surreal.

All for now.

Jump to this post

@contentandwell, you mention having planned on keeping a journal. Was this something suggested to you by a care provider or was that something you had just planned on on your own?

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@chattykathy

I have thought about the question from Annie; I think the staff could have done a better job by talking about the transfer with me and getting me comfortable with the idea that I would be moved out of ICU, same floor but another room until next day. I was moved late at night and did not have same people working with me. It was strange. They needed my room for another patient who was critical and coming back from transplant surgery which I understood totally, but I needed more preparedness. It was a trust thing. When a person is blind and cannot see faces and see body language, it takes one aback at first to get use to the fact.

My husband was called back to the hospital that night to help calm my jitters and get me settled in the new room. After an hour or 2 I was OK with the idea.

I think the next day I was transferred back to the transplant floor with people I knew since I had been there previously for 3 weeks prior to surgery. Sometimes, a person needs a little extra help in getting use to things since they have been bombarded with info and trying to get it all straight. Do any of you feel the same way? I know all people are different in how they accept and process new ideas or is this a "blind" thing. It is just so overwhelming at times.

As I have had time to look back on my experiences in the hospitalizations over those particular years, I could not have had better care from all who were involved. At times, I was difficult because I was confused and could not comprehend some of the things that were going on. I hope this makes sense to everyone as I am trying not to ramble.

AS I stated before, my journey was long and complicated by the fact I was so sick prior with encephalopathy. After transplant, as the liver started filtering the toxins, my color came back and some of the confusion cleared but it took time for all of this to happen. I am sure those of you who have had liver transplant have experience the same process.

Another thing that was difficult was to know that others who I had met through the hospitality house were going home just a few days after transplant and I was stuck in the hospital. There were a lot of factors that played into my mental status at the time. Only now, while looking back, it all seems surreal.

All for now.

Jump to this post

@contentandwell, I think that each transplant center is different, just like each patient is different. I have talked with some transplant recipients at home, and I have been surprised at how patient follow-up care is provided and scheduled - or nor scheduled. But I guess all is good because we are here and we are able to talk about it together.
Rosemary

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@chattykathy

I have thought about the question from Annie; I think the staff could have done a better job by talking about the transfer with me and getting me comfortable with the idea that I would be moved out of ICU, same floor but another room until next day. I was moved late at night and did not have same people working with me. It was strange. They needed my room for another patient who was critical and coming back from transplant surgery which I understood totally, but I needed more preparedness. It was a trust thing. When a person is blind and cannot see faces and see body language, it takes one aback at first to get use to the fact.

My husband was called back to the hospital that night to help calm my jitters and get me settled in the new room. After an hour or 2 I was OK with the idea.

I think the next day I was transferred back to the transplant floor with people I knew since I had been there previously for 3 weeks prior to surgery. Sometimes, a person needs a little extra help in getting use to things since they have been bombarded with info and trying to get it all straight. Do any of you feel the same way? I know all people are different in how they accept and process new ideas or is this a "blind" thing. It is just so overwhelming at times.

As I have had time to look back on my experiences in the hospitalizations over those particular years, I could not have had better care from all who were involved. At times, I was difficult because I was confused and could not comprehend some of the things that were going on. I hope this makes sense to everyone as I am trying not to ramble.

AS I stated before, my journey was long and complicated by the fact I was so sick prior with encephalopathy. After transplant, as the liver started filtering the toxins, my color came back and some of the confusion cleared but it took time for all of this to happen. I am sure those of you who have had liver transplant have experience the same process.

Another thing that was difficult was to know that others who I had met through the hospitality house were going home just a few days after transplant and I was stuck in the hospital. There were a lot of factors that played into my mental status at the time. Only now, while looking back, it all seems surreal.

All for now.

Jump to this post

@andreab, I kept a journal of sorts. It started as a record of my many tests and procedures and eventually evolved into a journal. I saw one in a sitting rooms at the Gift of Life House and that is where I got the idea. It has many gaps, but I went back after my transplant when I was stronger, and added some of the missing parts. I am glad I did it.
My husband kept all of the emails that he sent back home to a growing list of family and friends. He also kept all of the replies. He has printed them and we have put them into 2 binders! They cover a time span of 8 months. They tell our story, and they show our support and prayers that kept us going.
These are two things that we will cherish forever.
I used to encourage people to begin a journal when listed for a transplant. I will begin to do that again. Thanks for this reminder!
Rosemary

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@chattykathy

I have thought about the question from Annie; I think the staff could have done a better job by talking about the transfer with me and getting me comfortable with the idea that I would be moved out of ICU, same floor but another room until next day. I was moved late at night and did not have same people working with me. It was strange. They needed my room for another patient who was critical and coming back from transplant surgery which I understood totally, but I needed more preparedness. It was a trust thing. When a person is blind and cannot see faces and see body language, it takes one aback at first to get use to the fact.

My husband was called back to the hospital that night to help calm my jitters and get me settled in the new room. After an hour or 2 I was OK with the idea.

I think the next day I was transferred back to the transplant floor with people I knew since I had been there previously for 3 weeks prior to surgery. Sometimes, a person needs a little extra help in getting use to things since they have been bombarded with info and trying to get it all straight. Do any of you feel the same way? I know all people are different in how they accept and process new ideas or is this a "blind" thing. It is just so overwhelming at times.

As I have had time to look back on my experiences in the hospitalizations over those particular years, I could not have had better care from all who were involved. At times, I was difficult because I was confused and could not comprehend some of the things that were going on. I hope this makes sense to everyone as I am trying not to ramble.

AS I stated before, my journey was long and complicated by the fact I was so sick prior with encephalopathy. After transplant, as the liver started filtering the toxins, my color came back and some of the confusion cleared but it took time for all of this to happen. I am sure those of you who have had liver transplant have experience the same process.

Another thing that was difficult was to know that others who I had met through the hospitality house were going home just a few days after transplant and I was stuck in the hospital. There were a lot of factors that played into my mental status at the time. Only now, while looking back, it all seems surreal.

All for now.

Jump to this post

@rosemarya, this is true, they are all different. I am amazed that my center seems to be one of the few that strongly suggests, almost insists, that you wear a mask on an airplane. I will of course but I wish I didn't have to. If it is true that viruses can get through the masks then what's the point? I did already purchase some and they are supposed to have an embedded anti-viral so hopefully that will help.
JK

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@chattykathy

I have thought about the question from Annie; I think the staff could have done a better job by talking about the transfer with me and getting me comfortable with the idea that I would be moved out of ICU, same floor but another room until next day. I was moved late at night and did not have same people working with me. It was strange. They needed my room for another patient who was critical and coming back from transplant surgery which I understood totally, but I needed more preparedness. It was a trust thing. When a person is blind and cannot see faces and see body language, it takes one aback at first to get use to the fact.

My husband was called back to the hospital that night to help calm my jitters and get me settled in the new room. After an hour or 2 I was OK with the idea.

I think the next day I was transferred back to the transplant floor with people I knew since I had been there previously for 3 weeks prior to surgery. Sometimes, a person needs a little extra help in getting use to things since they have been bombarded with info and trying to get it all straight. Do any of you feel the same way? I know all people are different in how they accept and process new ideas or is this a "blind" thing. It is just so overwhelming at times.

As I have had time to look back on my experiences in the hospitalizations over those particular years, I could not have had better care from all who were involved. At times, I was difficult because I was confused and could not comprehend some of the things that were going on. I hope this makes sense to everyone as I am trying not to ramble.

AS I stated before, my journey was long and complicated by the fact I was so sick prior with encephalopathy. After transplant, as the liver started filtering the toxins, my color came back and some of the confusion cleared but it took time for all of this to happen. I am sure those of you who have had liver transplant have experience the same process.

Another thing that was difficult was to know that others who I had met through the hospitality house were going home just a few days after transplant and I was stuck in the hospital. There were a lot of factors that played into my mental status at the time. Only now, while looking back, it all seems surreal.

All for now.

Jump to this post

@andreab No one suggested a journal, I just wanted to so I could have a record of everything. I kick myself that I didn't have it with me so most of my coherent memory was lost in my drugged up state.
JK

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@alyric

This is a brief overview of what brought me to Mayo Clinic Hospital. May 1, 2016 I was flown from another hospital emergently to St. Mary's Hospital in Rochester after a traumatic intubation at another outlying facility, after I attempted to die by overdosing with hundred & hundreds of pills (April 29, 2016). This resulted in a tracheal tear. (I was in 3 hospitals in under 36 hours). The tear was over 2" in length. It was found no one had lived from an injury such as mine. I was admitted to CICU because the ET tube was 1/2 in the trachea & 1/2 outside of it allowing subcutaneous air surrounding the organs & compressing the organs, but my heart was having the most problems at that time. I had a tracheotomy done to place a trach in & allow the air to slowly escape. At that time an ET tube was inserted through the trach & mouth so each lung could be ventilated. The Surgeon who accepted me researched procedures & found there was none documented. She & her team came up with one & surgery was May 3, 2016. An incision was made just under the right scapula, above the 4th & 5th ribs under the axillae to the breast crease. The 4th rib was removed & the 4th & 5th rib muscles were drawn through a window to rebuild the trachea. My lungs couldn't oxygenate my blood so was put on ECMO. I remember nothing except a few small things from the day I overdosed. I have a few snippets of memories, brief seconds of lucidity, but remember the dreams and nightmares so very vividly. I can even still feel them & the emotions they elicited. It's almost impossible to explain them to anyone. When I was allowed to come out of sedation I couldn't lift my head, arms, or legs. I was terrified. I was on ECMO approximately 2 weeks & the ventilator for 2 1/2 weeks; I was decannulated May 27th just before being transported to another Mayo facility for swing bed rehab.

It's been a year of firsts for me. Being able to think clearly, make good decisions, not living in the black hole of depression & building a life worth living are all things I'm doing for the first time in 15 years.

It is my heartfelt desire to meet the team of professionals who saved my life & thank them for their part in returning life to me. I want them to know they didn't put "Humpty Dumpty together" so I could kill myself. I want them to know I have not thought about hurting myself or ending my life. I need to do this to start the next chapter of my life & close this one. Have any of you done this? I went back to St. Mary's & met & thanked some of my nurses; it was so cathartic to do this. They remembered me, we cried together.

I have some more questions to ask but maybe I will find the answers as I continue to read everyone's posts. Thanks for allowing me to talk. I don't have anyone to share with who would understand my thoughts & feelings.

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@alyric, thank you so much for taking time and telling us about your journey with critical illness and your experiences since. Your perspective on this side of all of it is very powerful. The desire to reconnect with your care team is so normal, and I know from my professional experience that this can be healing not only for the patients but also for the healthcare providers. I also wonder, if anyone else such as @rsinger22 , @baceman , @mouse355 has had this desire or has reconnected with their healthcare team in anyway and if so what were your experiences with that?

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@alyric The story you have shared regarding you and your husband is quite remarkable! Thank you. I'm sure it will inspire others as they read it. Best wishes to you both! Teresa

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