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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

@marield65

Dear Content and Well: You are my answer to my prayer. Since April I have been trying to find someone who went through the delirium. All I heard from were people who were caretakers, and my family, to tell me what people do when in delirium.
You don’t know what a Godsend you are because this is something that one has to go through for anyone to believe it. I GOT mad at my husband for not coming to visit me in the hospital, but he was there everyday, I just didn’t see him when I was in this state, or remember it, but he said I talked to him and answered all his questions and I was very upbeat and happy (hyper-delirium) and all I wanted to do was get out of bed and walk. And I wouldn’t believe them when they said I had a knee replacement, I told them I had back surgery. (I was in denial that I need knee surgery, and I had 5 back surgeries, one of which was 4 months before the knee replacement). I don’t remember this either.
I do remember falling. My feet got tangled up in the sheets when I climbed out of bed when a nurse yelled at me, and I fell on my knees to the floor. They took xrays and I was ok. This woke me up from the delirium but mind was all jumbled. They were going to tie me to the bed, which is the worst thing to do for a delirious person because they are scared to begin with, but they had a nurse with me 24 hrs round the clock.
A lot of funny things happened in my mind and what I did, but when I came to, it was the most God Awful thing that has ever happened to me.
Now I might have to have more back surgery and I don’t know what to do. I am learning everything I can about this, and at the hospital, they think it was the DiLaudid they gave me for pain, and the older you get ( I am 70) the less you can metabolize the medication. But I think it was the anesthesia also. I have all my records and will inform the Doctors involved, and the hospital, what meds I took, and what kind of anesthesia I had, so this doesn’t get repeated, but you cannot stop it from happening again, all you can do is inform and learn and keep yourself healthy. I was also anemic at the time, and maybe dehydrated.
I’m so glad you wrote to me, keep writing if you feel like it, and maybe we can help each other. Thanks for reaching out.
Marie
By the way, how did you find me ? I been writing to all the sites to find someone who has had this. Thanks so much. God Bless.

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@rosemarya Thanks Rosemary. That is a topic I would like to pursue also. Will do that when I have more time, I am blasting through these messages because I have a lot to do right now.
JK

@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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@elizabethbryant Hi Elizabeth, I just realized that it has been a while since we heard from you. How are you doing? Teresa

@andrehab, can HE damage the brain so that certain memories (though known) cannot be stated? Is there any way to recover or treat this type of deficiency? Since my episode of HE I have recovered much of my verbal communication skills, yet my speech is slower and at times I cannot come up with the word I want to use. My PCP dismisses this as aging, but I am sure it has more to do with the episode of HE. Can you help me find resources to research, identify and possibly treat my situation? Thank you for any help you can provide.

@marield65

Dear Content and Well: You are my answer to my prayer. Since April I have been trying to find someone who went through the delirium. All I heard from were people who were caretakers, and my family, to tell me what people do when in delirium.
You don’t know what a Godsend you are because this is something that one has to go through for anyone to believe it. I GOT mad at my husband for not coming to visit me in the hospital, but he was there everyday, I just didn’t see him when I was in this state, or remember it, but he said I talked to him and answered all his questions and I was very upbeat and happy (hyper-delirium) and all I wanted to do was get out of bed and walk. And I wouldn’t believe them when they said I had a knee replacement, I told them I had back surgery. (I was in denial that I need knee surgery, and I had 5 back surgeries, one of which was 4 months before the knee replacement). I don’t remember this either.
I do remember falling. My feet got tangled up in the sheets when I climbed out of bed when a nurse yelled at me, and I fell on my knees to the floor. They took xrays and I was ok. This woke me up from the delirium but mind was all jumbled. They were going to tie me to the bed, which is the worst thing to do for a delirious person because they are scared to begin with, but they had a nurse with me 24 hrs round the clock.
A lot of funny things happened in my mind and what I did, but when I came to, it was the most God Awful thing that has ever happened to me.
Now I might have to have more back surgery and I don’t know what to do. I am learning everything I can about this, and at the hospital, they think it was the DiLaudid they gave me for pain, and the older you get ( I am 70) the less you can metabolize the medication. But I think it was the anesthesia also. I have all my records and will inform the Doctors involved, and the hospital, what meds I took, and what kind of anesthesia I had, so this doesn’t get repeated, but you cannot stop it from happening again, all you can do is inform and learn and keep yourself healthy. I was also anemic at the time, and maybe dehydrated.
I’m so glad you wrote to me, keep writing if you feel like it, and maybe we can help each other. Thanks for reaching out.
Marie
By the way, how did you find me ? I been writing to all the sites to find someone who has had this. Thanks so much. God Bless.

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I might have to have back surgery and I will bring it up to the doctor about the NO General Anesthesia. I will let you know how I make out. I am scared to death to have another surgery.
Thanks so much. Marie

@marield65

Dear Content and Well: You are my answer to my prayer. Since April I have been trying to find someone who went through the delirium. All I heard from were people who were caretakers, and my family, to tell me what people do when in delirium.
You don’t know what a Godsend you are because this is something that one has to go through for anyone to believe it. I GOT mad at my husband for not coming to visit me in the hospital, but he was there everyday, I just didn’t see him when I was in this state, or remember it, but he said I talked to him and answered all his questions and I was very upbeat and happy (hyper-delirium) and all I wanted to do was get out of bed and walk. And I wouldn’t believe them when they said I had a knee replacement, I told them I had back surgery. (I was in denial that I need knee surgery, and I had 5 back surgeries, one of which was 4 months before the knee replacement). I don’t remember this either.
I do remember falling. My feet got tangled up in the sheets when I climbed out of bed when a nurse yelled at me, and I fell on my knees to the floor. They took xrays and I was ok. This woke me up from the delirium but mind was all jumbled. They were going to tie me to the bed, which is the worst thing to do for a delirious person because they are scared to begin with, but they had a nurse with me 24 hrs round the clock.
A lot of funny things happened in my mind and what I did, but when I came to, it was the most God Awful thing that has ever happened to me.
Now I might have to have more back surgery and I don’t know what to do. I am learning everything I can about this, and at the hospital, they think it was the DiLaudid they gave me for pain, and the older you get ( I am 70) the less you can metabolize the medication. But I think it was the anesthesia also. I have all my records and will inform the Doctors involved, and the hospital, what meds I took, and what kind of anesthesia I had, so this doesn’t get repeated, but you cannot stop it from happening again, all you can do is inform and learn and keep yourself healthy. I was also anemic at the time, and maybe dehydrated.
I’m so glad you wrote to me, keep writing if you feel like it, and maybe we can help each other. Thanks for reaching out.
Marie
By the way, how did you find me ? I been writing to all the sites to find someone who has had this. Thanks so much. God Bless.

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@marield65, @rosemarya sent you a great resource about delirium. I am going to attach some additional links to resources that I think you might find valuable:
https://connect.mayoclinic.org/newsfeed-post/post-icu-syndrome-tedx-talk/
http://www.icudelirium.org/patients.html
http://www.myicucare.org/Thrive/Pages/Find-In-Person-Support-Groups.aspx

Thank you, Thank you, Thank you

@marield65

Dear Content and Well: You are my answer to my prayer. Since April I have been trying to find someone who went through the delirium. All I heard from were people who were caretakers, and my family, to tell me what people do when in delirium.
You don’t know what a Godsend you are because this is something that one has to go through for anyone to believe it. I GOT mad at my husband for not coming to visit me in the hospital, but he was there everyday, I just didn’t see him when I was in this state, or remember it, but he said I talked to him and answered all his questions and I was very upbeat and happy (hyper-delirium) and all I wanted to do was get out of bed and walk. And I wouldn’t believe them when they said I had a knee replacement, I told them I had back surgery. (I was in denial that I need knee surgery, and I had 5 back surgeries, one of which was 4 months before the knee replacement). I don’t remember this either.
I do remember falling. My feet got tangled up in the sheets when I climbed out of bed when a nurse yelled at me, and I fell on my knees to the floor. They took xrays and I was ok. This woke me up from the delirium but mind was all jumbled. They were going to tie me to the bed, which is the worst thing to do for a delirious person because they are scared to begin with, but they had a nurse with me 24 hrs round the clock.
A lot of funny things happened in my mind and what I did, but when I came to, it was the most God Awful thing that has ever happened to me.
Now I might have to have more back surgery and I don’t know what to do. I am learning everything I can about this, and at the hospital, they think it was the DiLaudid they gave me for pain, and the older you get ( I am 70) the less you can metabolize the medication. But I think it was the anesthesia also. I have all my records and will inform the Doctors involved, and the hospital, what meds I took, and what kind of anesthesia I had, so this doesn’t get repeated, but you cannot stop it from happening again, all you can do is inform and learn and keep yourself healthy. I was also anemic at the time, and maybe dehydrated.
I’m so glad you wrote to me, keep writing if you feel like it, and maybe we can help each other. Thanks for reaching out.
Marie
By the way, how did you find me ? I been writing to all the sites to find someone who has had this. Thanks so much. God Bless.

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Thank you so much

@2011panc

@andrehab, can HE damage the brain so that certain memories (though known) cannot be stated? Is there any way to recover or treat this type of deficiency? Since my episode of HE I have recovered much of my verbal communication skills, yet my speech is slower and at times I cannot come up with the word I want to use. My PCP dismisses this as aging, but I am sure it has more to do with the episode of HE. Can you help me find resources to research, identify and possibly treat my situation? Thank you for any help you can provide.

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@2011panc There is research out there to support that memory issues could be related to hepatic encephalopathy (HE). It is common to hear that these memory issues are often interpreted as “aging” when in reality the difficulty may stem directly from previous serious or critical illnesses. You may find more directed answers from a gastroenterologist or a provider who specializes in the liver. Many times the recommendation will be to focus on prevention of recurrence of the hepatic encephalopathy through diet, medications, etc. Other times, working with an occupational or speech therapist may be suggested to focus more directly on memory issues. Do you have a provider that you see specifically for this issue?

I have again entered this site because of ongoing mental and emotional responses to suffering severe septic shock after surgery in March 2016; and septic shock after surgery in April 2017. My 2016 Mayo hospital summary indicates i experienced metabolic encephalopathy.

I wonder if my mental/emotional experiences are related to septic shock and/or to post-intensive care syndrome. I have read that ‘septic encephalopathy’ has a ‘long-lasting cognitive and depressive disturbances in patients after the sepsis resolves’.

I have heightened depression and heightened anxiety while recovering. For a year I saw and now continue to see a psychologist. The psychologist is very insightful, but I am not sure he is educated in the affects of severe septic shock on the brain and in post-intensive care syndrome. Thus, I wonder if this website can provide me with additional insights.

Basically, I am having difficulty adjusting to changes in my general sense of well-being since March 2016. Recovery was complicated by the reality that the severe septic shock resulted in my sudden retirement, since my physical recovery is extensive. My general well-being also has been affected
by the second experience of septic shock.

M.H.

@muriel66

I have again entered this site because of ongoing mental and emotional responses to suffering severe septic shock after surgery in March 2016; and septic shock after surgery in April 2017. My 2016 Mayo hospital summary indicates i experienced metabolic encephalopathy.

I wonder if my mental/emotional experiences are related to septic shock and/or to post-intensive care syndrome. I have read that ‘septic encephalopathy’ has a ‘long-lasting cognitive and depressive disturbances in patients after the sepsis resolves’.

I have heightened depression and heightened anxiety while recovering. For a year I saw and now continue to see a psychologist. The psychologist is very insightful, but I am not sure he is educated in the affects of severe septic shock on the brain and in post-intensive care syndrome. Thus, I wonder if this website can provide me with additional insights.

Basically, I am having difficulty adjusting to changes in my general sense of well-being since March 2016. Recovery was complicated by the reality that the severe septic shock resulted in my sudden retirement, since my physical recovery is extensive. My general well-being also has been affected
by the second experience of septic shock.

M.H.

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Thank you for coming here to share your story and look for understanding and answers. I am encouraged that you are working with a psychologist and continue to look for answers and solutions for what bothers you. I am not an expert in anything, so I will just share about myself, my thoughts and my impressions. In your case, I believe your current emotional/mental status is directly related to your physical events and ongoing difficulties. I am 6 years post-transplant (only one)and had a difficult first year with diminishing difficulties each year that passes. Your issues have been much more extreme than mine were, so I am not surprised that you are still suffering. My suggestion to you would be to also look into some grief counseling. After all, you have experienced the “death” of your health and a near-death experience, which you probably have not addressed as a loss and something you grieve. I also continue to look for answers, in my case I am trying to find a definition for my loss of brain function. Since I cover mine well, there is little interest in addressing the issue. However, like you, I am curious and want to know. Without a diagnosis I cannot find out what to expect and what I may be able to do to lessen any negative impacts of my mental status.
I use a great many stress-relievers (as well as medications) to manage my stress, depression and anxiety. Here is some of my list: meditation, yoga, prayer, research, journaling, talk therapy, attention to diet/nutrition/physical health, and exercising to regain core strength. I do not use all every day, or for every situation. I try one at a time until I can get myself in control enough to maintain my most ‘normal’ self.
It is hard. Many people do not understand or know. They do not matter. They do not need to understand, they just need to accept. I had to work hard to accept myself and my limitations. It never goes away, but it does get easier over time. You are now on my prayer list for acceptance, healing and comfort. Blessings on your path.

@muriel66

I have again entered this site because of ongoing mental and emotional responses to suffering severe septic shock after surgery in March 2016; and septic shock after surgery in April 2017. My 2016 Mayo hospital summary indicates i experienced metabolic encephalopathy.

I wonder if my mental/emotional experiences are related to septic shock and/or to post-intensive care syndrome. I have read that ‘septic encephalopathy’ has a ‘long-lasting cognitive and depressive disturbances in patients after the sepsis resolves’.

I have heightened depression and heightened anxiety while recovering. For a year I saw and now continue to see a psychologist. The psychologist is very insightful, but I am not sure he is educated in the affects of severe septic shock on the brain and in post-intensive care syndrome. Thus, I wonder if this website can provide me with additional insights.

Basically, I am having difficulty adjusting to changes in my general sense of well-being since March 2016. Recovery was complicated by the reality that the severe septic shock resulted in my sudden retirement, since my physical recovery is extensive. My general well-being also has been affected
by the second experience of septic shock.

M.H.

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I would like to pull in some previous participants to this particular conversation. Specifically @alyric, @spottedcat83, @crhiggins, @rsinger22, @baceman – I feel like your previous conversations have similarities to what @muriel66 has shared with us. Is anyone willing to again share a similar story or a few words on what has or has not worked for them in their experience with recovery from critical illness?

@muriel66

I have again entered this site because of ongoing mental and emotional responses to suffering severe septic shock after surgery in March 2016; and septic shock after surgery in April 2017. My 2016 Mayo hospital summary indicates i experienced metabolic encephalopathy.

I wonder if my mental/emotional experiences are related to septic shock and/or to post-intensive care syndrome. I have read that ‘septic encephalopathy’ has a ‘long-lasting cognitive and depressive disturbances in patients after the sepsis resolves’.

I have heightened depression and heightened anxiety while recovering. For a year I saw and now continue to see a psychologist. The psychologist is very insightful, but I am not sure he is educated in the affects of severe septic shock on the brain and in post-intensive care syndrome. Thus, I wonder if this website can provide me with additional insights.

Basically, I am having difficulty adjusting to changes in my general sense of well-being since March 2016. Recovery was complicated by the reality that the severe septic shock resulted in my sudden retirement, since my physical recovery is extensive. My general well-being also has been affected
by the second experience of septic shock.

M.H.

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Thank you, Rosemary. Your suggestions assist me. After the first experience of septic shock, I grieved. After the second experience, I have anger and lethargy. The stress relievers you mention are ones I utilize. When I was at Mayo in 2017, I was asked in occupational therapy to list all the ways to nourish well-being.
The hardest part for me is accepting my limitations. Because I was a very motivated person prior to two experiences of septic shock, it is difficult for me to accept my weariness. I feel as though I am in an empty waiting room for an endless amount of time. I do make a point of seeing weekly each of my closest friends. My husband is the best daily companion in this journey.

@muriel66

I have again entered this site because of ongoing mental and emotional responses to suffering severe septic shock after surgery in March 2016; and septic shock after surgery in April 2017. My 2016 Mayo hospital summary indicates i experienced metabolic encephalopathy.

I wonder if my mental/emotional experiences are related to septic shock and/or to post-intensive care syndrome. I have read that ‘septic encephalopathy’ has a ‘long-lasting cognitive and depressive disturbances in patients after the sepsis resolves’.

I have heightened depression and heightened anxiety while recovering. For a year I saw and now continue to see a psychologist. The psychologist is very insightful, but I am not sure he is educated in the affects of severe septic shock on the brain and in post-intensive care syndrome. Thus, I wonder if this website can provide me with additional insights.

Basically, I am having difficulty adjusting to changes in my general sense of well-being since March 2016. Recovery was complicated by the reality that the severe septic shock resulted in my sudden retirement, since my physical recovery is extensive. My general well-being also has been affected
by the second experience of septic shock.

M.H.

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@muriel66, I am pleased to read that you are finding some ways to move forward with your life. It is difficult to accept limitations that we can be burdened with. I would like to thank you for your kind words, and I wish I deserved them, but I believe that @2011panc is the one who responded with those helpful suggestions. She is an amazingly strong person, just like you are.
Hugs,
Rosemary

@marield65

Dear Content and Well: You are my answer to my prayer. Since April I have been trying to find someone who went through the delirium. All I heard from were people who were caretakers, and my family, to tell me what people do when in delirium.
You don’t know what a Godsend you are because this is something that one has to go through for anyone to believe it. I GOT mad at my husband for not coming to visit me in the hospital, but he was there everyday, I just didn’t see him when I was in this state, or remember it, but he said I talked to him and answered all his questions and I was very upbeat and happy (hyper-delirium) and all I wanted to do was get out of bed and walk. And I wouldn’t believe them when they said I had a knee replacement, I told them I had back surgery. (I was in denial that I need knee surgery, and I had 5 back surgeries, one of which was 4 months before the knee replacement). I don’t remember this either.
I do remember falling. My feet got tangled up in the sheets when I climbed out of bed when a nurse yelled at me, and I fell on my knees to the floor. They took xrays and I was ok. This woke me up from the delirium but mind was all jumbled. They were going to tie me to the bed, which is the worst thing to do for a delirious person because they are scared to begin with, but they had a nurse with me 24 hrs round the clock.
A lot of funny things happened in my mind and what I did, but when I came to, it was the most God Awful thing that has ever happened to me.
Now I might have to have more back surgery and I don’t know what to do. I am learning everything I can about this, and at the hospital, they think it was the DiLaudid they gave me for pain, and the older you get ( I am 70) the less you can metabolize the medication. But I think it was the anesthesia also. I have all my records and will inform the Doctors involved, and the hospital, what meds I took, and what kind of anesthesia I had, so this doesn’t get repeated, but you cannot stop it from happening again, all you can do is inform and learn and keep yourself healthy. I was also anemic at the time, and maybe dehydrated.
I’m so glad you wrote to me, keep writing if you feel like it, and maybe we can help each other. Thanks for reaching out.
Marie
By the way, how did you find me ? I been writing to all the sites to find someone who has had this. Thanks so much. God Bless.

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To content and well. This Marie (Marield65). What did you have when you had HE from cirrhosis? What is HE? I have more questions but I won’t hit you with them all at once. Thanks…

@marield65

Dear Content and Well: You are my answer to my prayer. Since April I have been trying to find someone who went through the delirium. All I heard from were people who were caretakers, and my family, to tell me what people do when in delirium.
You don’t know what a Godsend you are because this is something that one has to go through for anyone to believe it. I GOT mad at my husband for not coming to visit me in the hospital, but he was there everyday, I just didn’t see him when I was in this state, or remember it, but he said I talked to him and answered all his questions and I was very upbeat and happy (hyper-delirium) and all I wanted to do was get out of bed and walk. And I wouldn’t believe them when they said I had a knee replacement, I told them I had back surgery. (I was in denial that I need knee surgery, and I had 5 back surgeries, one of which was 4 months before the knee replacement). I don’t remember this either.
I do remember falling. My feet got tangled up in the sheets when I climbed out of bed when a nurse yelled at me, and I fell on my knees to the floor. They took xrays and I was ok. This woke me up from the delirium but mind was all jumbled. They were going to tie me to the bed, which is the worst thing to do for a delirious person because they are scared to begin with, but they had a nurse with me 24 hrs round the clock.
A lot of funny things happened in my mind and what I did, but when I came to, it was the most God Awful thing that has ever happened to me.
Now I might have to have more back surgery and I don’t know what to do. I am learning everything I can about this, and at the hospital, they think it was the DiLaudid they gave me for pain, and the older you get ( I am 70) the less you can metabolize the medication. But I think it was the anesthesia also. I have all my records and will inform the Doctors involved, and the hospital, what meds I took, and what kind of anesthesia I had, so this doesn’t get repeated, but you cannot stop it from happening again, all you can do is inform and learn and keep yourself healthy. I was also anemic at the time, and maybe dehydrated.
I’m so glad you wrote to me, keep writing if you feel like it, and maybe we can help each other. Thanks for reaching out.
Marie
By the way, how did you find me ? I been writing to all the sites to find someone who has had this. Thanks so much. God Bless.

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@marield65, When you want to direct your question to a particular individual. you can highlight @name. Then copy it into your text reply. That way he/she will get a notification about the post.

@contentandwell, I want to be certain that you see the above question from Marie.
Rosemary

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