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

Hello!
My journey to find you started with a massive saddle PE, DVTs, emergency open heart surgery, life flight to an ecmo machine, 2 months ICU/CCU, countless surgeries, dialysis, medical coma, transfusions, drainage tubes, lines, respiratory therapists who beat me with a jack hammer. I am a year and a half out. Very happy to be alive. It was frightening. PICS is real. It’s terrifying. I have a zoom support group through Vanderbilt but am always always always wanting more friends who have been through it, more information about it, and more ways I can learn to give back to help others who suffer from it. A big shout out to the medical community who saved me.

A big WELCOME @mattiew! Welcome to Mayo Connect. I'm so happy you are here...it sounds like you almost were not here at all. How wonderful you are and what a blessing you have a second chance. I did not have the same life threatening conditions you had. Wow. That's incredible. I am glad you are here to share with others your experience. I was in ICU after open heart surgery and I agree with you. They don't call it "intensive" for nothing. I was not prepared to have terrible memories of being in ICU, but I sure did. I was able to work through them, but it took me months to even let myself think about it. And I was only there one day! I can't imagine 2 months! You are a super star! And you give the glory to the amazing medical team. They are amazing. Hopefully others who experienced your long journey in ICU will pop in here and say hi too. What have you found to be the biggest help accepting PICS happened to you? Do you have some thoughts you can share with others who may be going through the same thing?

I had a total knee replacement surgery at OMC hospital and that night after surgery i had septic shock and severe respiratory distress. I was transferred to St. Mary's ICU. I was put on a ventilator for 3 days and after i had issues waking up. I remember waking up in ICU and not being able to talk . After a week in ICU I was transferred to medical unit where I had to let my brain program itself. I was able to talk later. I had a ng tube in nose so they could tube feed me. I than had issues with eating . I had no appetite at all. I finally was able to get ng tube out once I started eating. Since being home im still not hungry. I've gone a whole day without eating. Ive lost close to 30lbs. Im tired, depressed, fatigued all the time. My family has no idea the trauma im still going through. I was very close to death I was so critically ill. I don't remember much. How long do these symptoms last?

@lonna72789, post-intensive care syndrome is real. Your ICU experience sounds intensive and scary, certainly not what one would expect from a procedure as common as total knee replacement.

I'm tagging a few fellow members like @rosemarya @mattiew @ew62 @emil @bellaphant123 and others who understand the struggle of not remembering and family and friends not completely understanding.

Ionna, have you been able to coach yourself back to eating? Does taking small meals more often help?

My appetite sucks. Ive gone multiple days a week not eating all day. Im not hungry

I survived septic shock in April 2022. I was in ICU for two weeks and recovery for about another 3 weeks. What you are experiencing is all true, fatigue, brain fog, decreased appetite, etc.. Please give yourself time to recuperate and rest, don’t push to get back to work right away and go easy with to do lists. Your body and brain are still in recovery. A very good place to get more information about what you’re going through is Sepsis Alliance at https://www.sepsis.org/
I hope this helps in some small way and please keep reaching out! I would also recommend seeing a therapist. It’s crucial to address your emotional and mental health. I am still dealing with this and it’s been over one year. Mental health is health!!

@lonna72789, I am a liver/kidney transplant recipient, and your story/your experience has caused me to think back to Feb 2009 when I had an emergency situation and spent a week in ICU in critical condition with liver failure, and acute kidney failure. It occurred 3 days before I was scheduled to fly to Mayo Rochester for a liver test before being reinstated on the liver transplant list. I had emergency dialysis which kept me alive until my condition stabilized. My memory of that time is fragmented with an awareness of my surroundings and the medical interventions. I do have some memory of my husband and sons at my bedside, and I barely remember family visiting 2 at a time, as I learned that I might be going into Hospice Care. When my conditin stabilized (thank goodness for great doctors and nurses) I was was flown to Mayo from Kentucky.
I barely remember the 750 mile medical flight or the arrival in Rochester. As I improved, I was frustrated and confused by not knowing what had occurred and there were gaps in my memory. memory. It seemed only natural to question my husband. I later learned how painful it was for him to re-think those terrible experiences that he had experienced! So, after my transplant I began to search my medical records and found some of the missing information which gave me some peace.

That is my experience. I am thinking that the fact that I did have my organ transplant after my ICI trauma allowed me to move on from the PICs that I experienced. I did, however, find myself crying easily and often, because I came to realize how near I came to not surviving.

Please stay hydrated and try to eat something. Do you have a favorite food? My favorite was ice cream, and I was told to eat it when I needed to eat.
How long ago was your knee surgery? How is that recovery going?