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

Hi everyone,
@andreab just posted a remarkable opportunity tell health care professionals about your ICU experience in order to improve the experience for others. She writes:

"The Thrive Peer Support Collaborative through the Society of Critical Care Medicine has connected Mayo Clinic with a vast network of international sites and experts who are dedicated to improving life after the ICU for patients and families."

Now they want to hear first-hand experiences through a 30-minute telephone interview. Click the link for more details and how to get involved.
https://connect.mayoclinic.org/newsfeed-post/opportunity-to-help/

Thank you so much for affording patients and their families this opportunity that can help impact current and future critical care (and after-care). Also, just a friendly reminder that we host a monthly in-person PICS support group for patients and family member the 3rd Monday of each month (next group: June 18th), from 6:00 to 7:00 PM, at Mayo Clinic Rochester Campus St. Mary's Hospital, Francis Board Room. This is a great opportunity to share your experience, strength, and hope with other survivors and families, and to exchange ideas on bolstering resilience and recovery, in a compassionate, accepting, supportive environment. To attend, go in the front doors of the Francis Tower. When you get inside, take a right at the main information desk that is just past the elevators. Go towards the end of the long hall and we will have a sign out for the group, and we'll be looking for you! Call if you need help at 507-398-7470. Refreshment are served.

Where can I read about this disrase.? Intensive care syndrome. Now that I am older, icu CD be a part of my future. However, I do have a signed Do Not Resuscitate

Ok I found it

Hi @oregongirl Read more about post intensive care syndrome (PICS) on the PICS Page. You'll find it here on Connect: https://connect.mayoclinic.org/page/pics/

Scroll through the blog posts by Annie, Mayo ICU Nurse Practitioner, as she explains what it is.

I cannot tell you how happy I am to discover this online support group. It's been 5 months since I was intubated, in a coma, in the ICU. The cause: a series of seizures that were completely unexpected and put me on the brink of multi-organ failure. I very nearly died. Now I've learned that it's true that you enter the ICU as one person and leave as someone different. I know I can never get my old life back...for one thing, repeat seizures could kill me (the preferred outcome) or leave me severely brain damaged (the not preferred outcome) and that could happen at any time despite the heavy medication I now take. I find that terrifying.
Alas no one at my hospital (a large medical center in the Northwest) mentioned post ICU syndrome or told me and my family what I might experience once home. So I naively thought I'd bounce back in a couple of weeks. I had no idea how long-lasting my physical weakness would be, nor how exhausted I'd be, nor how much continuing pain I'd experience from a broken back caused by my seizures and undiagnosed for two weeks. Then there's the mental aspect -- the brain fog, forgetfulness, confusion. I've self-diagnosed myself with a brain injury. How significant or long-lasting it is I don't know.
However I do feel like I'm improving thanks to time and the Internet. There are no Post ICU support groups where I live and no therapists I can use (under my health plan) who have experience counseling PICU survivors. So I'm working to piece together my own recovery by finding information and help online. It's been a hit or miss process.

@seanne, I want to extend a heartfelt Welcome to Mayo Connect. I am happy that you have entered this discussion. I had a brief stay in ICU and my memory gap is my bothersome symptom. Nine years ago I was critical with failing liver (on transplant list) and acute kidney failure. It was a very painful time for my family and even to this day, they do not want to speak of it. I had to sit them down and to ask what happened during my times of 'unknowing' . So for me, it has helped to meet others who understand that 'need to know, and to understand what was going on'.
I never thought if it as PICU, but when reading the experiences of others, I have learned that me and my family were affected. I am at loss as to what to say about your experience that might be helpful to you, except to say, "I understand what you are experiencing, and I understand the fear with the unknowing".

I want to share this resource with you where you can learn more about Post Intensive Care Syndrome (PICS).
https://connect.mayoclinic.org/page/pics/

Did you know that there is a Discussion Group - Epilepsy and Seizures that might be interesting. https://connect.mayoclinic.org/group/epilepsy-2bb359/

I will wait with you, and I am happy to chat with you while waiting for others to share their experiences.
Hugs,
Rosemary

How are you doing today, @rckj Rhoda?

Rosemary-
I flew off a 4-wheeler and hit my head and broke my wrist. I went to the ER but no CT scan was done just put on pain meds. I do not remember that week. This happened Aug 8th last year, I woke up in the ICU having a breathing tube taken out, that was Aug.21st. The day before they were going to take me off life support. I woke up so confused, no idea what had happened, where I was. I was in the hospital about a month but since then I feel so "disconnected", I remember bits and pieces of my stay, I have flash backs of dreams, Vague weird things I experienced when I was in a coma and shortly after. It is so hard to explain I just feel different. My life is different. I am seeing a counselor, I am now on a transplant list and on Dialysis 3 days a week. I just don't feel " grounded". It is so hard to explain. I am here but not here most days if that makes sense. The whole events that took place are so mind boggling. They had to write in a notebook things that happened , like being flown to the hospital, because I kept asking. I read " good -bye" notes from my boys friends, I was treated as though I died and I struggle with relationships, dreams, flashbacks..lots of things. Jumbled memories,visions. Any suggestions. No one seems to understand

@colleenyoung thank you for reaching out to me. It meant a great deal to me. I would have responded much sooner but had another two hospitalizations, same critical issues. My husband and I are returning to Mayo Clinic in Rochester in the end of August to try to find a way to eliminate or minimize these episodes. Possible there may be an auto immune issue that is kicking off the adrenal crisis. I am hopeful but nervous. Hoping for a better quality of life and elimination of life threatening episodes. Thank you for being there for me and hoping we can stay in touch. Best wishes, Rhoda.