What a great question, Annie. @patrassi @lupedelarosa12 @sistergoldenhair @tfcassidy @vivian88 @janicepike @lamborama @contentandwell @coastalgirl and @2011panc I'm wondering if you might like to participate in this discussion about post-intensive care?
Annie asks, "After you or your loved one was transferred out of ICU and no longer considered “critically ill,” what was the one thing that surprised you the most?"

When my son was transferred out of ICU , I realized how lucky we were... How thankful we must be... How great were the Mayo doctors and the staff ... How my dreams were coming true.

In all honesty, I do not even remember being in ICU. I know I was there because I have been told about it. I was told there was a problem with my central line and it had to be moved. The very first thing I remember after surgery was getting up to sit in a chair and trying to take a few steps. I wanted to walk further but they made me sit down after only about 3 steps because my blood pressure was plummeting. That may have been in the ICU, but I am not sure. The next time I woke I was in my regular room. Two things that surprised me most were how much worse I felt than I had anticipated and how difficult it was to take all the medications. I expected it to be bad because I was accustomed to post-op pain, but the pain, weakness and debilitation were much more than I had ever experienced before. At the end of the first year post-op I was relieved to have discovered additional health issues that had been masked by my pre-transplant condition. That might sound odd, but you cannot treat what you don't know you have.

@2011panc You are bringing back memories. I too was surprised at how miserable I was initially. My husband kept reminding me that I had just had major surgery, what did I expect? I felt like "why did I do this?" and he kept saying "no more lactulose". I really was in a lot of pain while in the hospital. I lay awake one night and was in so much pain that I had tears running down my cheeks. When the nurse came in on a routine check and found me that way she chided me and told me to not let it get that bad, she would have given me another dose of pain reliever but I was trying hard to limit the pain meds. I was a bit stiff and all after I came home and did continue to take oxycodone before bed but I got off of that as quickly as possible since they said as long as I was still taking it I could not drive. From that point on my recovery was smooth and I was so happy to have my new liver, and new life.
I'm sorry to hear you have other conditions also. So far I seem OK on that front, just two bad knees. I was supposed to have a knee replacement in May but I have postponed it. I really cannot stand the thought of being inactive again.
JK

Thank you @contentandwell. I don't remember what pain medications I was on, but I always get back to acetaminophen only as soon as possible because I already have damaged kidneys. My husband gave me a hard time about looking rather grim and sour. I guess I did. My son mentioned that I wasn't smiling anymore. I think they expected me to be my happy, driven self sooner than it happened. It is different for everyone. I'm just glad to have the quality of life I have and grateful for the loving family that honored their child's gracious desire to donate organs.

@2011panc, when I first got the cirrhosis I was a bit depressed and my husband was pushing me to see a counselor but I did not feel that would help. I had an appointment with my PCP shortly after and he said I had "justifiable depression" and as long as it went away after not too long an amount of time then I probably did not need to see someone. I think that expression "justifiable depression" is very apt and can be true for a number of situations.
JK

So true! I had a similar outcome, expecting to feel better afterwards, only to find out I had more health issues-less severe, but definitely masked by the previous condition. It was very discouraging to not "feel better"...

@2011panc, Thank you for sharing your story. It is not uncommon for people to not remember their ICU stay. So much happens during a - usually - short period of time. I am glad that it sounds as though your recovery is going well at this point. Did you work with Physical and/or Occupational Therapy either during and/or after your hospital stay?

@andreab I'm not sure if your response was to my post or to a different one, but I did have some PT in the hospital, followed by PT at home, then PT at a physical therapy place. Medicare allows PT in the home if the patient is "housebound" so I stopped that after a couple of weeks, I wanted to get out and the physical therapist agreed that I was overdue to get out and start doing things again.
The outside physical therapist is great, I went to him once before for my back. I didn't see him for long either because he would not have been able to justify more visits to Medicare.
I think I was offered OT but turned it down. I am not ever sure what they do in OT but I thought it was something I did not need.
JK

I did not have PT or OT following my transplant. I don't even remember having it in the hospital. Either my caregiver or the nurses were always available to assist me in walking, which was the only approved "exercise" for quite some time. Once freed to exercise I restarted my at-home program as much as possible.