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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?
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Thank you, Thank you, Thank you
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2 ReactionsThank you so much
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2 Reactions@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?
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2 ReactionsI 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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1 ReactionThank 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.
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6 ReactionsI 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?
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3 ReactionsThank 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.
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3 Reactions@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
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5 ReactionsTo 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...
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1 Reaction@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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