I was blissfully unaware and/or uncaring about the progress of other patients. My husband kept track of such things, but I did not want to be distracted from concentrating on doing everything I needed to do to progress. I am generally comfortable with not knowing exactly what will happen, but I do believe that my ability to see and recognize people and things help me substantially. I am a visual person and often remember faces and body language, but cannot remember names or circumstances of the relationship. If I could not see, I would be significantly handicapped until I learned another way to identify. Blessings to you on your recovery.

@chattykathy I think change can be difficult for many people. Frankly I was so drugged up at the point when they moved me from ICU to the transplant area that it didn't faze me. Prior to surgery I was only in the transplant area for about 7 or 8 hours and I don't even remember that. I know I was in a private room, most of the transplant rooms are, but after transplant I was in one of the few semi-private rooms. It was OK, the other patient had just given a kidney to her husband so she was pretty well overall.
Even with it being a normal reaction though I am sure that being blind makes anything like that more difficult. I try to imagine what it would be like and just thinking about it is scary.
After transplant I was sort of foggy, I really do not remember much. I so regret not keeping the journal as I had planned. Weirdly, my husband was there a lot but he doesn't remember it all either. When we both remember something it seems as if our remembrances are vastly different anyway.
I was in for six days. Were people who had liver transplants going home much before that? I think six days is pretty normal at my center, with many staying for more days.
There is a lot about the whole experience that seems surreal to me too, and that is compounded by the fact that in the month and a half prior to transplant I was hospitalized four times for various problems. They all run together now.
JK

I did not experience encephalopathy. However, I did experience confusion relate to how quickly my condition changed and how quickly treatments changes. I also remember that when I was very weak and out-of-it that whenever I was jostled or moved, I was aware for an instant and frightened. @chattykathy, you are an amazing person to have endured all that you have.

@contentandwell, @chattykathy, @2011panc
As a transplant recipient I am enjoying meeting all of you and sharing this conversation. I am inspired by hearing of your strength and determination in overcoming such huge obstacles. I want to thank all of you for sharing.

As a Connect Mentor, I would like for you to think about moving some of you conversation to the Transplant discussion group after you have satisfied the issues related to PICS. Your experiences related to your transplant, and your realistic and positive attitudes are surely to benefit someone else who might be walking the same journey. I am going to start a new discussion and I invite you to give it a look.
Thank all of you for your inspiration,
Rosemary

Thank you for the kind words. My husband also kept track of other people, especially from the hospitality house where he was staying. Some of them were released back to hospitality house within 5-7 days. Some of them had to returned for bile duct revision and some went back to their homes within a few weeks. I do not know how many received double transplants like me; by the time I was discharged to the HH, most of them had been discharged to home. I would get so excited for those new patients who checked in for transplant. I was so happy for them. I tried to share my story with them and encourage them.

I look forward to any questions that anyone has for me.
CK

About the drugs, I fought them on the drug issue because I wanted to know everything going on around me. I know they gave me some in the beginning and I also had to take them before wound VAC changes. I did not like the feeling of not being "right." After we came home, it was different and I took them to endure the pain of the wound dressing changes. I was so relieved when I was off of pain meds. Of course, the withdrawal, even from a low dose is difficult. I hardly ever take anything for pain now.

Looking forward to hearing from all. CK.

@chattykathy, I also looked to the transplant recipients for encouragement and hope. My experience is that I was flown to Mayo MN out of ICU, 800 miles away. My husband and I were in an unfamiliar world and we had no support - until we met the wonderful people who were with us at the Gift of Life House in Rochester. I think that you and I have had many similar experiences. Thank you for sharing. That is what Mayo Connect is all about: sharing and encouraging others who are in similar situations that we have experienced. When we go home from that supportive setting, we sometimes feel lost and alone. That is why I like this Connect forum.
and - meeting nice people, too!
Rosemary

@rosemarya I positively loved the care I have received at MGH and also the after-care. They have been wonderful, but I wish they had a similar type of support system that Mayo has. I think it may be unique.
JK

@2011panc, I love your phrase, "I was blissfully unaware"! You were able to be blissfully unaware because of your husband's presence and caregiving. I remember my husband saying that he didn't know how to be a caregiver, and it frightened him. He learned how to be a caregiver along the way. Today he remains my strength and support whenever any question or difficulty arises in my health.
Continued blessings to you.
Rosemary

My husband was working on a farm at the time I was ill. He lost work because of my many hospitalizations. We tried to find someone else to be my caregiver, but it did not work out. I told him one day he would have to be the caregiver. He did not know a lot about caregiving but learned quickly. Now he thinks he is a nurse with a degree and all. LOL.

We have been back to the ICU floor and transplant floor to say thanks to the staff including doctors. I always ask about them in my appointments with the other staff. I am amazed by the compassion and care bestowed by the Mayo employees. I just do not think I could have received better care. Many a day, while awaiting transplant, the doctors would come in to my room and hold my hand and talk to me.

The name of the hospitality house in Florida is Gabriel House Of Care. It is such a wonderful place to stay; it is our home away from home. Everyone there, employees, patients, and caregivers are always so supportive.
Until next time, CK.

Thank you for your insight into what could have made the transition out of the ICU easier. Although it can be easy to, one should not underestimate the importance preparing people for such transitions of care.