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

Posted by Colleen Young, Connect Director @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?

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

Mentor
Teresa, Volunteer Mentor | @hopeful33250 | Jul 24, 2018
In reply to @muriel66 "It has been ten days since my last statement about the way I am. I become..." + (show)
@muriel66

It has been ten days since my last statement about the way I am. I become more and more in touch with the ways I experience PICS after severe septic shock (2016) and septic shock (2017). I hope I am not repeating myself when I say that frankly I am cognitively and emotionally worse than I was before I experienced the second incident of septic shock. My concentration certainly is worse, as is my depression. Of course, depression can diminish concentration and diminished concentration can exacerbate depression.

It is positive that I finally accept that my depression is substantial and thus, I am more patient with myself and less judgmental of my cognitive disfunction. (Pat me on the back, please.) The uneasiness that I have is not knowing if in the future, I will return at least to the level of cognitive/emotional healing that I experienced before the second experience of septic shock. In other words, I am concerned about whether or not I will be able to function in a more 'normal' fashion. (Please pray for me.)

Tonight my brain is weary. I need to rest... and that is a subject about which I later will comment. My dreams seem long and complicated. I wish they were simple ones. Anyway, I continue to be thankful to be alive and as very-well as I am! My dear husband and I laugh about some of the silliness in my changes and our adjustments. Thanks for listening! M.H.

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@rckj Hello Rhoda:

I can imagine how frustrating it is to live with this type of exhaustion. I am sure that you are looking forward to your appointment at Mayo and getting some answers to your problem. I too, look forward to hearing from you after your appointment at Mayo.

As I'm not very familiar with adrenal disorders, I'm just wondering how this adrenal condition was diagnosed? Is there a specific blood test that shows the cortisol level in your blood or did a scan show some problem with the adrenal glands?

Teresa

REPLY
Mentor
Rosemary, Volunteer Mentor | @rosemarya | Jul 24, 2018
In reply to @rosemarya "When I spent 5 days in ICU with sepsis, dehydration, acute kidney failure, and endstage liver..." + (show)
@rosemarya

When I spent 5 days in ICU with sepsis, dehydration, acute kidney failure, and endstage liver disease, I was in and out of awareness. I was sometimes halfway aware of my surroundings, or activities happening to me and around me (only if I was moved, or a sudden noise). I have a partial recollection of the people and of the procedures. But I had no context time.
I have a vague recollection of being flown to another hospital. And arriving there. Although not in ICU, I was on the transplant floor at Mayo Methodist, and for the first few days, I continued to be in and out of awareness.
Later on, when I asked my husband, who is my caregiver, to explain to me what had occurred, I was shocked. So much had occurred that I didn't even realize. And on top of that , my memory of it, was all jumbled. For a while this really bothered me. But now, as time has passed, (8 years) it is not a concern to me, anymore.
Rosemary

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@beitel -
I also was transferred by air. From local ICU (where I would have gone to hospice care) to Mayo where I spent time in hospital with liver and acute kidney failure (caused by failing liver). I was never in a coma, but I was not awake or fully aware of my surroundings either. And I have experienced some very emotional times. I have grilled my husband about the events, and my sons, but they do not like to talk about it, even now nine years later. I am not bothered much by it anymore because new memories are taking over.

Becky, you were so fortunate to receive treatment that saved your life.
Is the blood disease treated and cured? Or is it still in your system? Will it have any effect on receiving a kidney transplant?

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Mentor
Rosemary, Volunteer Mentor | @rosemarya | Jul 24, 2018
In reply to @rosemarya "When I spent 5 days in ICU with sepsis, dehydration, acute kidney failure, and endstage liver..." + (show)
@rosemarya

When I spent 5 days in ICU with sepsis, dehydration, acute kidney failure, and endstage liver disease, I was in and out of awareness. I was sometimes halfway aware of my surroundings, or activities happening to me and around me (only if I was moved, or a sudden noise). I have a partial recollection of the people and of the procedures. But I had no context time.
I have a vague recollection of being flown to another hospital. And arriving there. Although not in ICU, I was on the transplant floor at Mayo Methodist, and for the first few days, I continued to be in and out of awareness.
Later on, when I asked my husband, who is my caregiver, to explain to me what had occurred, I was shocked. So much had occurred that I didn't even realize. And on top of that , my memory of it, was all jumbled. For a while this really bothered me. But now, as time has passed, (8 years) it is not a concern to me, anymore.
Rosemary

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@beitel - Becky, some patients have talked about re-occurrences of fears, dreams, flashbacks around the event anniversary. Just want to give you an advance notice in case it happens.

REPLY
Ron Rubenzer | @user_cha272278 | Jul 24, 2018
In reply to @rosemarya "When I spent 5 days in ICU with sepsis, dehydration, acute kidney failure, and endstage liver..." + (show)
@rosemarya

When I spent 5 days in ICU with sepsis, dehydration, acute kidney failure, and endstage liver disease, I was in and out of awareness. I was sometimes halfway aware of my surroundings, or activities happening to me and around me (only if I was moved, or a sudden noise). I have a partial recollection of the people and of the procedures. But I had no context time.
I have a vague recollection of being flown to another hospital. And arriving there. Although not in ICU, I was on the transplant floor at Mayo Methodist, and for the first few days, I continued to be in and out of awareness.
Later on, when I asked my husband, who is my caregiver, to explain to me what had occurred, I was shocked. So much had occurred that I didn't even realize. And on top of that , my memory of it, was all jumbled. For a while this really bothered me. But now, as time has passed, (8 years) it is not a concern to me, anymore.
Rosemary

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What can you do about “anniversaries”. I’ve heard Mindfulness Based Stress Reduction (Dr Zinn) deals directly with PTSD. HE SAYS MBSR reduction focuses on what IS RIGHT with you, even in serious medical situations. How does one heal from PTSD?

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Ron Rubenzer | @user_cha272278 | Jul 24, 2018
In reply to @elizabethbryant "I burst out in tears like of and on for 7 months after my surgery and..." + (show)
@elizabethbryant

I burst out in tears like of and on for 7 months after my surgery and care at John Hopkins, it was so morbid. It took 7 months for me to stop
and the crying didn't start immediately after leaving the hospital. I wonder if it is a combination of the drugs and trauma

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I broke my neck. In A coma for 5 weeks. Once I awoke from the coma, I had to endure the possibility I would be paralyzed for life, if I got out of bed, waiting for my second surgery for months. Since I was bedridden for months, I tried to practice what I preached- Self- calming. It helped me endure flashbacks from the past of when I broke my neck, and fear about the future that the surgery to mend my neck would. I would highly recommend a therapist and Mindfulness Baesd Stress Reduction. Dr Ron. don’t give up. Time will heal your
Emotional wounds, if you intend it so. Hang in there I understand.

REPLY
2011panc | @2011panc | Jul 24, 2018
In reply to @rosemarya "When I spent 5 days in ICU with sepsis, dehydration, acute kidney failure, and endstage liver..." + (show)
@rosemarya

When I spent 5 days in ICU with sepsis, dehydration, acute kidney failure, and endstage liver disease, I was in and out of awareness. I was sometimes halfway aware of my surroundings, or activities happening to me and around me (only if I was moved, or a sudden noise). I have a partial recollection of the people and of the procedures. But I had no context time.
I have a vague recollection of being flown to another hospital. And arriving there. Although not in ICU, I was on the transplant floor at Mayo Methodist, and for the first few days, I continued to be in and out of awareness.
Later on, when I asked my husband, who is my caregiver, to explain to me what had occurred, I was shocked. So much had occurred that I didn't even realize. And on top of that , my memory of it, was all jumbled. For a while this really bothered me. But now, as time has passed, (8 years) it is not a concern to me, anymore.
Rosemary

Jump to this post

@beitel I read your post and responses of other people with interest because I also have had hallucinations related to medications. Morphine, dilotted (hydromorphone), tramadol and other opioids. My hallucinations, however, were interesting and humorous to me and I kind of miss them. I knew that they were hallucinations as they were happening and just watched to see where they would go and what would happen. I am an extremely curious person so that may be part of it. I remember seeing Brunhilda's red eye hovering above the door (actually the red light on the smoke alarm); the floor of the car disappeared and the dashboard turned into an airplane control panel and we were whizzing past stars and ufos (yard lights); my cat and people stood in corners, sat in chairs and walked around my room (when no one else was in the house) for some examples. I was careful not to drive while using these medications, but they did not interfere with my daily activities other than not driving.
I wonder why I can find my hallucinations humorous and other people find theirs terrifying. Does it have something to do with my basic personality? Interesting.

REPLY
rckj | @rckj | Jul 25, 2018
In reply to @muriel66 "It has been ten days since my last statement about the way I am. I become..." + (show)
@muriel66

It has been ten days since my last statement about the way I am. I become more and more in touch with the ways I experience PICS after severe septic shock (2016) and septic shock (2017). I hope I am not repeating myself when I say that frankly I am cognitively and emotionally worse than I was before I experienced the second incident of septic shock. My concentration certainly is worse, as is my depression. Of course, depression can diminish concentration and diminished concentration can exacerbate depression.

It is positive that I finally accept that my depression is substantial and thus, I am more patient with myself and less judgmental of my cognitive disfunction. (Pat me on the back, please.) The uneasiness that I have is not knowing if in the future, I will return at least to the level of cognitive/emotional healing that I experienced before the second experience of septic shock. In other words, I am concerned about whether or not I will be able to function in a more 'normal' fashion. (Please pray for me.)

Tonight my brain is weary. I need to rest... and that is a subject about which I later will comment. My dreams seem long and complicated. I wish they were simple ones. Anyway, I continue to be thankful to be alive and as very-well as I am! My dear husband and I laugh about some of the silliness in my changes and our adjustments. Thanks for listening! M.H.

Jump to this post

@hopeful33250 Teresa, thanks for your message. I will try to keep everyone updated re: Mayo’s solutions. The adrenal insufficiency is often misdiagnosed fo years, as it was for me. There are gradually increasing symptoms. Severe fatigue, nausea, vomiting, diarrhea, joint and muscle pain, electrolyte imbalance,low blood pressure, salt cravings, anemia, collapse, delirium, etc. It increases to being unable to function and adrenal crisis with high mortality if not treated. It is often blown off by doctors due to the vagueness of the symptoms. There are multiple tests for it, especially a stim test to see if under the injection of a precursor of cortisol whether your body can produce cortisol.The test can make you pretty sick however. Even endocrinologists misdiagnosed me and diagnosed wild things including psych implications. I am a clinical doctoral level practicing psychologist so I knew they were wrong but still devastating. It is a rare disorder and doctors are concentrated more on the epidemic of type two diabetes not this. There are also blood tests for just cortisol and it’s absorption as well as scans but I think the symptoms clinch the picture.thank you for your interest and concern. It helps me to talk about it and I greatly appreciate our conversations. I hope we can stay in touch. Rhoda

REPLY
rckj | @rckj | Jul 25, 2018
In reply to @muriel66 "It has been ten days since my last statement about the way I am. I become..." + (show)
@muriel66

It has been ten days since my last statement about the way I am. I become more and more in touch with the ways I experience PICS after severe septic shock (2016) and septic shock (2017). I hope I am not repeating myself when I say that frankly I am cognitively and emotionally worse than I was before I experienced the second incident of septic shock. My concentration certainly is worse, as is my depression. Of course, depression can diminish concentration and diminished concentration can exacerbate depression.

It is positive that I finally accept that my depression is substantial and thus, I am more patient with myself and less judgmental of my cognitive disfunction. (Pat me on the back, please.) The uneasiness that I have is not knowing if in the future, I will return at least to the level of cognitive/emotional healing that I experienced before the second experience of septic shock. In other words, I am concerned about whether or not I will be able to function in a more 'normal' fashion. (Please pray for me.)

Tonight my brain is weary. I need to rest... and that is a subject about which I later will comment. My dreams seem long and complicated. I wish they were simple ones. Anyway, I continue to be thankful to be alive and as very-well as I am! My dear husband and I laugh about some of the silliness in my changes and our adjustments. Thanks for listening! M.H.

Jump to this post

@windwalker hi Terri. Sorry you are struggling. You will be in my thoughts and I will hope for improvement. I will update you on Mayo’s solutions. My husband and I go in the end of August. Very little energy and despite meds I still have adrenal symptoms. Suspecting that there may be another immune disorder which is exacerbating the adrenal dysfunction. I am a practicing clinical psychologist but can work very little now. I miss it terribly. I miss more quality time with my husband and my friends. Every hospitalization sets me back months even with intensive rehab. I plan carefully about how much I can do in a day and how to manage it around my adrenal medicine doses, trying to pick the strongest times. The questions we have for Mayo are how to minimize the acute episodes and how to improve daily quality of life. I used to be an energetic person, hard working, athletic, happy. I want to get some of that back and will work for it. I just need to know what to do, hence return to Mayo. Thank you so much fo your concern. It warms my heart and helps me to keep trying as hard as I can to get better. It is a lifelong disorder but I have to believe that there is better functioning in my future. Thank you so much and I hope we stay in touch. Rhoda

REPLY
Mentor
Teresa, Volunteer Mentor | @hopeful33250 | Jul 25, 2018
In reply to @muriel66 "It has been ten days since my last statement about the way I am. I become..." + (show)
@muriel66

It has been ten days since my last statement about the way I am. I become more and more in touch with the ways I experience PICS after severe septic shock (2016) and septic shock (2017). I hope I am not repeating myself when I say that frankly I am cognitively and emotionally worse than I was before I experienced the second incident of septic shock. My concentration certainly is worse, as is my depression. Of course, depression can diminish concentration and diminished concentration can exacerbate depression.

It is positive that I finally accept that my depression is substantial and thus, I am more patient with myself and less judgmental of my cognitive disfunction. (Pat me on the back, please.) The uneasiness that I have is not knowing if in the future, I will return at least to the level of cognitive/emotional healing that I experienced before the second experience of septic shock. In other words, I am concerned about whether or not I will be able to function in a more 'normal' fashion. (Please pray for me.)

Tonight my brain is weary. I need to rest... and that is a subject about which I later will comment. My dreams seem long and complicated. I wish they were simple ones. Anyway, I continue to be thankful to be alive and as very-well as I am! My dear husband and I laugh about some of the silliness in my changes and our adjustments. Thanks for listening! M.H.

Jump to this post

@rckj

Hello Rhoda,

Thank you for all the information about your situation. It was very enlightening for me. The "vagueness of symptoms" that you refer to must have made it hard to keep reaching for an answer. If I may ask a question (that is personal to me) my endocrinologist recently ordered blood tests, Metanephrine, Plasma and Normetanephrine, Plasma. The first one was completely within the normal range, but the second was a tad (.1) over the normal range. In trying to find out information about these tests, but I'm at a bit of a loss. From your experience are these tests ever used to diagnose adrenal problems?

Teresa

REPLY
Mentor
Teresa, Volunteer Mentor | @hopeful33250 | Jul 25, 2018
In reply to @rosemarya "When I spent 5 days in ICU with sepsis, dehydration, acute kidney failure, and endstage liver..." + (show)
@rosemarya

When I spent 5 days in ICU with sepsis, dehydration, acute kidney failure, and endstage liver disease, I was in and out of awareness. I was sometimes halfway aware of my surroundings, or activities happening to me and around me (only if I was moved, or a sudden noise). I have a partial recollection of the people and of the procedures. But I had no context time.
I have a vague recollection of being flown to another hospital. And arriving there. Although not in ICU, I was on the transplant floor at Mayo Methodist, and for the first few days, I continued to be in and out of awareness.
Later on, when I asked my husband, who is my caregiver, to explain to me what had occurred, I was shocked. So much had occurred that I didn't even realize. And on top of that , my memory of it, was all jumbled. For a while this really bothered me. But now, as time has passed, (8 years) it is not a concern to me, anymore.
Rosemary

Jump to this post

@user_cha272278 Hello again Dr. Ron,

I found your questions to be very thought-provoking (I like that!). When you speak of "What can you do about anniversaries" what type of anniversary are you thinking about? Related to the time you were so ill or something else?

Teresa

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