What did you find most surprising once you were out of the ICU?
Being in the ICU as either a patient or a family member is a difficult experience for most people. However, transitioning out of the ICU can be challenging as well. When either you or a family member no longer required critical care and were transferred out of the ICU, what were some of the things that surprised you the most?
MODERATOR'S NOTE
The knowledge exchange shared in this discussion helped to create this article written for the Mayo Clinic app. Knowledge for patients by patients and beyond Mayo Clinic Connect.
- After the ICU: Advice from people who've been there https://www.mayoclinic.org/CPT-20514168
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Thanks for sharing a bit of your story alex12119! It is such a personal and intense experience it often feels overwhelming. I'm 17 months out from the ICU and still struggling with mobility and a sadness that is difficult for others to understand. I was alone in the ICU due to the Covid restrictions. I truly needed my family to help me deal with the pain, hallucinations and paranoia, but it was verboten. Once I was off the ventilator, I relearned how to use my cell phone I could at least hear from them. It was a blessing! Until I met my new internist a year ago, no doctor had validated my PICs experience. He ordered physical therapy and I am able to walk a quarter mile or so now (using a walker, but up and moving). My life has changed, but I am grateful for each new day. I am able to volunteer at a food bank, cook a meal, play with my dog and give thanks for the wonderful people in my life.
Good to hear from you, Alex. Can you tell me more about how you “hold space for your grief” especially as anniversaries approach?
Hi Charles and @kathylee, have you seen the Post Intensive Care Syndrome (PICS) blog by Mayo ICU nurse practitioner and fellow PIC-Family sufferer @andreab ?
She wrote a series of blogs called "Breaking it down" that helps to explain PICS. Sometimes understanding what's going on can help recovery. Here's how to find the series.
1. Go to the PICS blog https://connect.mayoclinic.org/blog/pics/
2. Enter "Breaking it down" into the blog search. (see attached image).
All the information posted has been helpful. Thanks to all who have contributed. Sad to hear from others with experience like mine. Saddest is that few doctors prepare their patients for PICUS. I am a long- retired physician who discovered that I had a clinically definable complication by surfing the internet. I had severe, recurring hallucinations during my ICU stay. You have said that their severity predicts the duration of the complication. Next months for me it will be two years despite following the prescribed therapies.
Charles.
helpful info. thanks to all
Thanks Colleen! I have appreciated what each person has dealt with. Great information to expand understanding.
Charles, I know what you mean about the lack of physician awareness of PICs. My oncologist came to see me nearly everyday during my 10 day ICU and consequent hospitalization. He didn't understand my delirium and hallucinations. To this day I am sure he's unaware. Thank you for bringing up this important point.
Kathylee
Colieen,
I have and thank you.
Charles