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

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?

Hello all. New here. Had a lengthy stay at UofM ICU after a Cardiac Arrest on March 16, 2024 and have all of the ICU Syndromes. I just can’t get a grip on things and my sleep is almost non existent. I feel like I’m sliding into a very bad place. I’m not suicidal mind you, just feel like my symptoms are deepening. Any thoughts or recommendations?

Hi, @jaypoucher, and Welcome to Connect. I want to say that, I think I know how you must be feeling because I had what sounds like a slightly similar experience 4 weeks ago after a visit to the ER with a fractured wrist that had to be set in place under sedation. I have never had such a frightening response to sedation before. In addition to the pain of the fracture, I could not sleep, eat, or rest because of the frightening hallucinations that took over for the following 3 - 4 days. I guess that I was lucky because this was only for a few days, but my entire body and mind were affected to the point where I feared for my health because I'm a transplant recipient and had never experienced anything like this. Fearing that my organs were affected, I contacted my doctor and my care team who ran tests and assured me that I was experiencing no damage to my transplant. Looking back, I think that the sedation plus me being dehydrated had messed me up inside. I still don't want to talk about it, and the sedation medicine has been listed on my 'Do Not Admimnister' list.
Jay, I have to admit that my story is likely not helping you too much, but you have been through a rough medical time. It is good that you are alive and able to join Connect and I hope that someone with a similar experience will see your post and respond.

Have you spoken to the doctors about this? If not, I do encourage you to do so. Sometimes the trauma of a situation can cause something like this, and a mild medication prescribed temporarily by your doctor can help you to get back on a steady course. You are not alone, and you deserve some assistance from your medical team. You have struggled long enough. Can you contact your doctor in the morning, before the weekend?

Hi @jaypoucher1, I wanted to add my welcome and check in. Did you see the post from @rosemarya? How are you doing?

Hi everyone,
Happy to meet everyone, sorry we are here together. I was discharged on July 2nd, 2024 after 8 days in the ICU, 9 days total at the hospital. I experienced some kind of mystery respiratory incident - I got too sick for it to be just pneumonia but got better too fast for it to be ARDS.

I'm home now, trying to figure out what "recovered" means. I'm doing physical therapy, and regular therapy. I'd like to do a group for survivors but haven't found one beyond this page (which I deeply appreciate!). My respiratory rate is improving, my muscles are getting stronger. I do still have confusion, brain fog... my brain feels like its 60-70% of what it was. Sleep is improving. Thank God I'm on summer break for work and can focus on myself.

I'm still trying to navigate almost dying - how did I let myself get so sick? (In part I threw myself into work because my husband left me in November. He "couldn't do it" anymore, wasn't willing to work on the relationship.) Am I happy with the life I would have left behind? (I'm not) How do I create a life I'm proud of, thats bigger than just work?

I'm also trying to learn how to let people in, to let them care for me the way I care for them. I work in a helping field, and give so freely to others without expectation. I'm using the website signupgenius.com to let people offer their help. Its amazing how people have rallied to help me, I'm struggling to accept their love.

I feel really lucky in so many ways - to have had access to phenomenal medical care, to have made it out, to be recovering well, to have the support of others, to have found this group, to have a future. This is not how I expected the summer to go. I know they God doesn't give you more than you can handle, but I wish He was less confident in my abilities to persist.

If anyone has suggestions on supports for my mother as well, that would be really appreciated. She has had two adult children in the ICU this year, which is a lot.

A lot of us empathize with what you've been through; you are not alone. Don't know your age but the older we are the longer recovery takes. Keep adding a bit to the physical part of your rehab if you can. Days when you just can't, don't worry, It took me six months to actually be normal, and I still am not where I'd like to be. I am 78 and young in every way before my sepsis hit last October, no symptoms, delirium finally moved my partner to get me up and go to ER, didn't leave for 10 days, IV Rx there and home another 6 days. Near death, yes. Good care, yes. Good support system, small but good. Patience is what you need, and caring for yourself first priority. You've overdone it in the near past, and I did too, so now it will take much longer to get things done. That is ok. We are not indispensable. Ask for help from those you have, even Nextdoor.com members pitch in for you if you need help. Church etc may be there for you, they do a lot when folks are ill and need work around the house, or just a visit. Talk about your experience when you can, with those you trust.