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

My name is Shae. I think I suffer from p.i.c.s.does anyone else?

My name is Shae. I was in i.c.u. in February 2022. I have many symptoms of p.i.c.s. anyone experience it?

Hi @shae4, I'm sorry to hear that you're struggling with PICS and symptoms caused by a stay in ICU in February. I'm bringing in a few other members like @luttrj @afinegirl573 @rosemarya @psd0972 @kbreder who have also experienced PICS as a patient or as a family member.

Shae, may I ask what led to your being in ICU? What PICS symptoms are you finding difficult to manage?

@shae4, I was in ICU in February, 2009 because my kidneys suddenly failed while I was very ill with liver failure. Things were critical. I was extremely weak and felt helpless. I remember ambulance, doctors, nurses . muffled voices, machines, emergency dialysis, etc. But I had no awareness of time, place, or events.
Afterwards, when my condition improved, I struggled with not knowing a lot what happened to me during that time. I could remember bits and pieces, but did not make any sense.

@shae4, How did you end up in ICU? What kind of symptoms are you having? You are not alone.

Hi Shae,
I was in ICU in 2017 with septic shock. I definitely experienced PICS. My symptoms were hair loss, peeling skin, my nails came off - everything grew back 🙂 I also experienced PTSD. I went to counseling, joined a Post-Sepsis facebook group and every year on the anniversary of my illness I read my medical records and notes from that experience. Almost 5 years later, I still think about it. But - last year I didn’t read my medical records, I am no longer in counseling and I can think about my experience as something that happened to me, it isn’t who I am.
To summarize - get help for PTSD, find a group that went through what you did. With time you will start feeling like yourself pre-ICU ❤️

Its exactly 1 yr since my husbands open heart surgery and over 2 week ICU stay. He had ICU psychosis and no one would discuss it with me in the hospital...they just kept saying "he'll be fine once he gets home. Well he's not. He's been depressed and has no energy or strength. None of his Drs offer any help...most saying "I've heard of it but don't know how to help". His surgeon refused to discuss it and basically ignored me. A few months ago he started having nightmares about what it was like for him in ICU. To him he was living in Dante's Inferno and being tortured. No one seems to know how to help him or what to do.
Where did you find help? He seems to be getting worse not better.

I’m so sorry to hear this. I went to counseling with a licensed therapist. He gave me coping skills and also did a little bit of EMDR. I think the coping skills helped me the most. EMDR is also used for PTSD in combat veterans.
xo

Thank you...been overwhelmed trying to find someone who understands and deals with ICU psychosis.

Bill here. 8 years post SLK transplant, with a long ICU stay and even longer rehab stay. I couldn’t walk, and using my hands was difficult, neuropathies in my feet, had to get swallowing lessons, delirium, etc. I had no memory of being admitted to the hospital, the ICU stay, or a week or so after the surgery. I learned to move about using a wheelchair and slideboard, and struggled with pain, neuropathies, insomnia, etc. Some meds helped, but I was on so many... anyhow, I’ve made peace with my amnesia since I partially reconstructed the months I lost from notes and witness accounts.
I serendipitously read about post-ICU syndrome, and realized that had been part of the problem in my recovery. Nobody had mentioned it as a possibility. I read that in Europe they keep a diary by your bed and any time someone did something to you, for you, with you, they wrote in the diary. Then, upon discharge, they give you the diary so that, along with the official records and witness accounts, you have a day-to-day account of what occurred. I wish I’d had that.
Enough for now. I should say that my experience was not typical of post transplant patients. I was just unlucky enough to be moribund on admission and then had all of the complications in the book. Without Mayo Clinic, I might not be writing this today. So I’m grateful; I just wish that post-critical illness syndromes were more recognized, along with physical healing. Perhaps they are now.
It’s been two years since I was hospitalized for anything. I still have to be careful: the COVID19 pandemic has been rough.
Hopefully this little story helps someone out there in the ether. Gottenyu.

Thank you @emil. I think your story is helpful to many, and most pointed to @ds1958 who just joined Mayo Clinic Connect.

@ds1958, how are you doing today?