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.

@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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Thanks for clarifying @contentandwell. I refer to that function as the @ auto-fill. I have no idea why it appears sometimes and not othertimes as one starts to type a member's @username. It should activate the auto-fill anytime one inserts the @symbol. I'll ask the tech team.

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@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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Good points @contentandwell and @colleenyoung. I'd like to see the @ auto-fill work a little more predictable as well - also sometimes it appears far below the "reply box" rather than up close and sometimes it stays in the reply box and blocks the message I am posting. The latter does not happen often, but it is difficult when it doesn't go away.

Teresa

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For the past four days, I have felt more uplifted. This might be the case because I have been successful in developing routine, though I have more to do to make this truly effective for physical and emotional recovery from my health issues. I am satisfied with small steps and am thankful. Even though my health issues have been difficult while at Mayo Methodist Hospital and Mayo Clinic, I actually feel very positive about my experiences there because of the compassionate and professional employees from each Mayo department. Being part of a worshipping community where I live is also helpful.

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@muriel66

For the past four days, I have felt more uplifted. This might be the case because I have been successful in developing routine, though I have more to do to make this truly effective for physical and emotional recovery from my health issues. I am satisfied with small steps and am thankful. Even though my health issues have been difficult while at Mayo Methodist Hospital and Mayo Clinic, I actually feel very positive about my experiences there because of the compassionate and professional employees from each Mayo department. Being part of a worshipping community where I live is also helpful.

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This is such great news, @muriel66. Thank you for sharing with us. Being satisfied with small steps is so important. They make the bigger steps possible. To use a running analogy: Not everyday can be a marathon. Some days we have to count putting on the running shoes as a success. You may find these discussions on Connect to be interesting to read or participate in:

- Staying Motivated for the Long Haul https://connect.mayoclinic.org/discussion/staying-motivated-for-the-long-haul/
While this discussion started about weight loss, the group is encouraging each other whatever a person's personal health goal is.
- How Spirituality Can Help Stress https://connect.mayoclinic.org/discussion/how-spirituality-can-help-stress/
The title says it all. Lots of different people sharing many aspects of emotional and spiritual health and how it relates to physical health

Muriel, would you mind sharing one (or more) of the small steps that you've made and how it helped?

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Hello everyone my name is Prashant from india sorry for my bad english.
Last year my father died in an very bad accident he suffered for 8 days in hospital. I am 30 year old i never saw my father ill not a single band aid on his body in my whole life and i last i saw my father lying on bed on ventilator and my bighest regret of my life is that he didn't say a word to me my mom and and my brother because after accident he was in coma and then my father died.

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After these events i started getting angry on small things.
my whole body shakes when i lie down or sit
My eyelids twich when i close them otherwise no problem in eyes or eylids
My teeths chatter when i close my teeths otherwise my teeeths are normal no problem in them
My lips twich
At night when i touch anything with my legs or fingers things feel like floating or moving,
When i lie down my legs feels like snakes from inside.
Very severe fatigue and no sleep in my eyes but after taking some mix vitamins syrups fatigue is gone and now there is sleep in my eyes.
And also there is one thing when i search for any disease on net it feels like that i have that symptoms but like when i search for teeth chatter on net result show parkinsons and the first symptom was finger tremor when i read that my fingers started shaking but after few days there was no tremor in my fingers can this happen

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@prashantnayal123

After these events i started getting angry on small things.
my whole body shakes when i lie down or sit
My eyelids twich when i close them otherwise no problem in eyes or eylids
My teeths chatter when i close my teeths otherwise my teeeths are normal no problem in them
My lips twich
At night when i touch anything with my legs or fingers things feel like floating or moving,
When i lie down my legs feels like snakes from inside.
Very severe fatigue and no sleep in my eyes but after taking some mix vitamins syrups fatigue is gone and now there is sleep in my eyes.
And also there is one thing when i search for any disease on net it feels like that i have that symptoms but like when i search for teeth chatter on net result show parkinsons and the first symptom was finger tremor when i read that my fingers started shaking but after few days there was no tremor in my fingers can this happen

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@prashantnayal123 thank you for joining the conversation and for sharing your story. I am so sorry that you have experienced such a deep loss. What you are describing sounds very much in line with what others who have experienced post intensive syndrome - family or PICS-F, have shared. You went through a very significant and unexpected trauma. Our PICS page has more information on this if you are interested in learning more. Have you had an opportunity to seek any type of counseling for your symptoms?

Link to PICS page:
https://connect.mayoclinic.org/page/pics/

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@prashantnayal123

After these events i started getting angry on small things.
my whole body shakes when i lie down or sit
My eyelids twich when i close them otherwise no problem in eyes or eylids
My teeths chatter when i close my teeths otherwise my teeeths are normal no problem in them
My lips twich
At night when i touch anything with my legs or fingers things feel like floating or moving,
When i lie down my legs feels like snakes from inside.
Very severe fatigue and no sleep in my eyes but after taking some mix vitamins syrups fatigue is gone and now there is sleep in my eyes.
And also there is one thing when i search for any disease on net it feels like that i have that symptoms but like when i search for teeth chatter on net result show parkinsons and the first symptom was finger tremor when i read that my fingers started shaking but after few days there was no tremor in my fingers can this happen

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No mam actually i am on bed for 3 months due to leg fracture as I told i am very poor and only income earner i didn't got the chance to tell anyone about my symptoms mam i am very scared that if something happens to me who will take care of my mom and small brother mam i cry at night and when my mom and brother are not at home i dont where to gi what to do.. mam i want to take care my sweet mom she is the sweetest person i have ever seen in my life in in night i look at her when she is sleeping and cry whole night ...

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Please tell me how to cure my self what to do and what type of doctor will see me is this pics curable or i will suffer my whole life

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@prashantnayal123

Hello everyone my name is Prashant from india sorry for my bad english.
Last year my father died in an very bad accident he suffered for 8 days in hospital. I am 30 year old i never saw my father ill not a single band aid on his body in my whole life and i last i saw my father lying on bed on ventilator and my bighest regret of my life is that he didn't say a word to me my mom and and my brother because after accident he was in coma and then my father died.

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@prashantnayal123 I am so sorry for your loss. Losing a parent is always difficult. I lost my father when I was 15 and my mother when I was 27. I will always miss them.
JK

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