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Post-Intensive Care Syndrome (PICS) - Let's talk
Intensive Care (ICU) | Last Active: Sep 16, 2024 | Replies (609)Comment receiving replies
I have thought about the question from Annie; I think the staff could have done a better job by talking about the transfer with me and getting me comfortable with the idea that I would be moved out of ICU, same floor but another room until next day. I was moved late at night and did not have same people working with me. It was strange. They needed my room for another patient who was critical and coming back from transplant surgery which I understood totally, but I needed more preparedness. It was a trust thing. When a person is blind and cannot see faces and see body language, it takes one aback at first to get use to the fact.
My husband was called back to the hospital that night to help calm my jitters and get me settled in the new room. After an hour or 2 I was OK with the idea.
I think the next day I was transferred back to the transplant floor with people I knew since I had been there previously for 3 weeks prior to surgery. Sometimes, a person needs a little extra help in getting use to things since they have been bombarded with info and trying to get it all straight. Do any of you feel the same way? I know all people are different in how they accept and process new ideas or is this a "blind" thing. It is just so overwhelming at times.
As I have had time to look back on my experiences in the hospitalizations over those particular years, I could not have had better care from all who were involved. At times, I was difficult because I was confused and could not comprehend some of the things that were going on. I hope this makes sense to everyone as I am trying not to ramble.
AS I stated before, my journey was long and complicated by the fact I was so sick prior with encephalopathy. After transplant, as the liver started filtering the toxins, my color came back and some of the confusion cleared but it took time for all of this to happen. I am sure those of you who have had liver transplant have experience the same process.
Another thing that was difficult was to know that others who I had met through the hospitality house were going home just a few days after transplant and I was stuck in the hospital. There were a lot of factors that played into my mental status at the time. Only now, while looking back, it all seems surreal.
All for now.
Replies to "I have thought about the question from Annie; I think the staff could have done a..."
@contentandwell, I think that each transplant center is different, just like each patient is different. I have talked with some transplant recipients at home, and I have been surprised at how patient follow-up care is provided and scheduled - or nor scheduled. But I guess all is good because we are here and we are able to talk about it together.
Rosemary
@andreab, I kept a journal of sorts. It started as a record of my many tests and procedures and eventually evolved into a journal. I saw one in a sitting rooms at the Gift of Life House and that is where I got the idea. It has many gaps, but I went back after my transplant when I was stronger, and added some of the missing parts. I am glad I did it.
My husband kept all of the emails that he sent back home to a growing list of family and friends. He also kept all of the replies. He has printed them and we have put them into 2 binders! They cover a time span of 8 months. They tell our story, and they show our support and prayers that kept us going.
These are two things that we will cherish forever.
I used to encourage people to begin a journal when listed for a transplant. I will begin to do that again. Thanks for this reminder!
Rosemary
@rosemarya, this is true, they are all different. I am amazed that my center seems to be one of the few that strongly suggests, almost insists, that you wear a mask on an airplane. I will of course but I wish I didn't have to. If it is true that viruses can get through the masks then what's the point? I did already purchase some and they are supposed to have an embedded anti-viral so hopefully that will help.
JK
@andreab No one suggested a journal, I just wanted to so I could have a record of everything. I kick myself that I didn't have it with me so most of my coherent memory was lost in my drugged up state.
JK
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@contentandwell, you mention having planned on keeping a journal. Was this something suggested to you by a care provider or was that something you had just planned on on your own?