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

Posted by @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?

REPLY

The procedures leading up to the 2013 surgery; this would have been the bile duct revision, etc. This surgery was difficult too due to the fact of all I went through prior. I had a lot of pain prior to and afterward. When I was released, we stayed at the hospitality house again. I was use to being elevated in the hospital bed. I came back to HH without a way to be elevated. I needed a wedge which we purchased and that helped so much. I wished I had thought of it during the time after transplant as it was very difficult to get out of bed. My ribs were so sore.

Of course, during the postop period, I had the button for pain meds and I used it this time. Those first couple of days, I was out of it most of the time. I did not want to travel home (3-1/2 hours away) with a belly full of staples. We stayed until my follow-up visit and then returned home. This recovery period was much easier than I thought it would be.
Later, CK.

I also wanted to talk about the kidney transplant patients I met who also had some problems with the new kidney not “waking up.” Did any of you have this kind of problem after transplant. Of course, I had a lot of tubes running in and out of me including catheters. I also underwent dialysis pre and postop as I mentioned in earlier posts. When they decided to stop dialysis to see how the kidney was “settling” in and how much it was working, all I could do was pray. I prayed a lot during the whole period and still pray today and am so thankful and blessed to undergo this journey. As more tubes and such were disconnected from me and I became more “mobile,” my depression lifted and worrying was less.

Until next time, CK.

@chattykathy You have been so through so much yet your spirits seem strong. That’s quite admirable. I am glad things are going well for you now. What is scar revision? I would really like to have my belly apron removed surgically since when I had such huge fluid retention I stretched more than ever so it hangs a lot now. Don’t know if insurance would pay for it though.

I too yoyo dieted all my life and am now at a weight lower than I had been at in many, many years. I really am a food addict and if I have a little of something I want more. I have found myfitnesspal.com online to be a huge help. It makes you accountable so you are less apt to have that little this or that. You know if you lie when you input your consumption that you are only lying to yourself. Between that, a fitness monitor that keeps me active, and an accurate, precise scale (it wasn’t as expensive as it sounds, a Tanita on Amazon under $50 a few years ago, and to me well worth it) that estimates BMI and fluid retention. I know those last two measurements depend on each other so on days when I have a large fluid retention, like when I had ascites, my BMI would read in the teens, but on days when my fluid retention is low my BMI is high.
I strongly recommend these tools to aid in weight reduction. I am still using them to try to keep the weight off, not an easy task. If you know other people using myfitnesspal you can be friends on it and see each other’s data which I would suspect would help too. If anyone here wants to try it I would be happy to have friends on it.
Jane

@contentandwell

@chattykathy You have been so through so much yet your spirits seem strong. That’s quite admirable. I am glad things are going well for you now. What is scar revision? I would really like to have my belly apron removed surgically since when I had such huge fluid retention I stretched more than ever so it hangs a lot now. Don’t know if insurance would pay for it though.

I too yoyo dieted all my life and am now at a weight lower than I had been at in many, many years. I really am a food addict and if I have a little of something I want more. I have found myfitnesspal.com online to be a huge help. It makes you accountable so you are less apt to have that little this or that. You know if you lie when you input your consumption that you are only lying to yourself. Between that, a fitness monitor that keeps me active, and an accurate, precise scale (it wasn’t as expensive as it sounds, a Tanita on Amazon under $50 a few years ago, and to me well worth it) that estimates BMI and fluid retention. I know those last two measurements depend on each other so on days when I have a large fluid retention, like when I had ascites, my BMI would read in the teens, but on days when my fluid retention is low my BMI is high.
I strongly recommend these tools to aid in weight reduction. I am still using them to try to keep the weight off, not an easy task. If you know other people using myfitnesspal you can be friends on it and see each other’s data which I would suspect would help too. If anyone here wants to try it I would be happy to have friends on it.
Jane

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The revisions I talked about in my previous posts are as follows:

In 2013, while at my yearly checkup, I underwent ultrasound that revealed scarring of the bile duct. The surgeons thought they could remove the scar tissue within the duct or place a stent. The scarring was too severe. I had a terrible-looking scar which needed a redo. So back to surgery I went. This was scheduled a couple of months out from the follow-up visit. I wore a bile duct bag to drain it until surgery.

So, they reopen the same incision line, cut away the old scar, and repaired bile duct so I will never have issues with it again. So far, so good.

I know how you wish for a tummy tuck for all that loose skin. I also wanted same after the weight loss and, in fact,I think if it had been done at my 4-month checkup after transplant, it would have helped quite a lot. I’m not sure if that type of surgery would have been covered by insurance.

I appreciate the helpful info about the fitness group.

CK

I would also like to mention that with all the weight loss after the transplant, I did not feel normal. Everyone told me the weight loss was great, but I lost too much too fast. I still had the “sick” look about me.

I was hurting in the right side when I got up and down but thought it was just the routine of healing and so on. This pain was pain from the bile duct. I underwent CT scan but nothing was found by local radiologist. So I continued on until my next checkup at Mayo and that is when bile duct problem was found.

@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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@chattykathy, I also looked to the transplant recipients for encouragement and hope. My experience is that I was flown to Mayo MN out of ICU, 800 miles away. My husband and I were in an unfamiliar world and we had no support – until we met the wonderful people who were with us at the Gift of Life House in Rochester. I think that you and I have had many similar experiences. Thank you for sharing. That is what Mayo Connect is all about: sharing and encouraging others who are in similar situations that we have experienced. When we go home from that supportive setting, we sometimes feel lost and alone. That is why I like this Connect forum.
and – meeting nice people, too!
Rosemary

@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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@rosemarya I positively loved the care I have received at MGH and also the after-care. They have been wonderful, but I wish they had a similar type of support system that Mayo has. I think it may be unique.
JK

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.

@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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@2011panc, I love your phrase, “I was blissfully unaware”! You were able to be blissfully unaware because of your husband’s presence and caregiving. I remember my husband saying that he didn’t know how to be a caregiver, and it frightened him. He learned how to be a caregiver along the way. Today he remains my strength and support whenever any question or difficulty arises in my health.
Continued blessings to you.
Rosemary

@chattykathy

I would also like to mention that with all the weight loss after the transplant, I did not feel normal. Everyone told me the weight loss was great, but I lost too much too fast. I still had the “sick” look about me.

I was hurting in the right side when I got up and down but thought it was just the routine of healing and so on. This pain was pain from the bile duct. I underwent CT scan but nothing was found by local radiologist. So I continued on until my next checkup at Mayo and that is when bile duct problem was found.

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@chattykathy I hope all your health problems are behind you at this point.

I am in a similar situation with my weight loss; people say how good I look but it has taken a toll on my face, and on the skin on my body which of course most people do not see other than the people in my water exercise class. If I had it to do over I think I would have stopped the weight loss a little sooner but now I have a whole new wardrobe of clothes so I do not want to have to buy a larger size and discard all of that.
JK

@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 I am very happy to hear that those negative thoughts are no longer plaguing you. You have been through a lot and now have a greater appreciation for life. I know you will continue to move forward.
I too would love to go back to see the people who cared for me in the hospital and thank them. There were so many and they were wonderful. My absolute favorite nurse was 40-ish, and she and I had some good laughs. Despite the huge age difference I felt like she was a friend.
JK

@chattykathy

I would also like to mention that with all the weight loss after the transplant, I did not feel normal. Everyone told me the weight loss was great, but I lost too much too fast. I still had the “sick” look about me.

I was hurting in the right side when I got up and down but thought it was just the routine of healing and so on. This pain was pain from the bile duct. I underwent CT scan but nothing was found by local radiologist. So I continued on until my next checkup at Mayo and that is when bile duct problem was found.

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@chattykathy, I have tagged you on a discussion in the Transplant group. I hope that you will be able to access that discussion directly and not need to navigate the system since it is difficult for you to do.
I have also tagged @contentandwell, @2011panc.
Rosemary

@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.

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.

@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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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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