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

@chattykathy, We are happy to have you here to join our discussions as well! You mention your transition out of the ICU and being terrified. This is a very common feeling as it is a whole new environment, new set of caregivers, and a new trust relationship you need to build. Is there anything you think back on that would have made the transition easier for you? Any preparation or any ICU follow-up that you think might have been helpful to ease that transition?

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.

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

I wanted to thank all who have responded to my pprevious posts. I have enjoyed hearing your stories. Here is a little more about my journey.

First, I want to say I am having trouble navigating the pages as I use a screen-reading program on the computer. As I type I hear words echoed back to me. I have been using this program for about 16 years. The program is called JAWS and it allows people who cannot see the screen to work at all types of jobs, mine was medical transcription work from home. I have lots of "talking" equipment in my home; a phone, including cellphone, calculator, and clock. I cook sometimes, but my husband does a lot of the cooking. I am just happy I taught him all I know about cooking. LOL.

Now, back to the journey: I was diagnosed in 2004 with diabetes, type 2 and a few months later chronic kidney disease. I found a nephrologist and continued on the journey by losing weight and controlling the diabetes with oral meds. I took Procrit shots along the way for the anemia for a while.

In 2008, I started having issues with the gallbladder which were difficult to diagnose. My local GI did not think I needed surgery, but I did. I was referred to surgeon and gallbladder was removed. At this time, I was diagnosed with cirrhosis of liver. This was because of NASH. I have been obese most of my life, even as a child. I would diet and lose weight and then gain it back. The dreadful yo-yo dieting disease.

In 2010, I was on vacation and hospitalized due to the anemia. I was admitted and underwent testing for the cause, then, underwent my first blood transfusions. I was scared out of my mind. Luckily, I was visiting my sister and had family nearby. During this hospital stay, I was told I needed liver and kidney transplant; my first words to doctor was send me to Mayo-Florida camput and the work began for my evaluation.

After a few months of waiting, we went for evaluation. After evaluation in the fall, I was added to transplant list in January 2011. I continued with my health issues and found local GI and nephrologist that I trusted better than others. These two doctors took really good care of me during this whole time and continue today. I struggled with the issues related to liver/kidney disease and was in and out of hospital.

I mentioned earlier that I had the TIPS procedure done and went downhill pretty fast, then to transplant in July 2011. Along the way, I met so many people who tagged along in my journey. I could not have had better care.

I had mentioned about my ICU stay earlier; I wanted to say also that I grew very close to my transplant team and nurses. The staff was very gracious about letting me have same nurses day after day, and I believe this was because I was blind and the trust issues I was having. I could recognize voices of the ones I knew and it was very comforting. This also helped with my long hospitalization.

About 3 weeks out from transplant, I underwent another surgery due to infection and liver hematoma. I returned to ICU with an open belly wound (same incision line) with wound VAC. I also started PT and OT. There were many days that I just did not feel I could walk or perform the OT exercises. Somehow, one just has to push themselves to do it.

As I stated earlier, I had an NG tube place prior to transplant; actually, it clogged 3 times and was replaced twice. The third time my doctor removed it and told me I would have to eat. I still was on the vent with trach, and this eating thing was really scarry for me. Of course, I had the speaking valve and wore it while eating. I hated it because I felt like I was suffocating. It was so wonderful when they removed the trach for good and placed a bandage over it. I could talk again.

One of the most scariest things was not being able to talk. If I pressed the nurse button, how would I convey to them I needed help. I just hit the bedrail and they would come. I wrote notes as I had clipboard and paper on my bedtray. My husband read my lips when I tried to convey to him what I needed. The more I recovered and was "at myself," he would stay during daytime and go back to hospitality house at night. I was in a private room which was great. Those first weeks, he stayed 24-7. Eventually, I recovered, we were at Mayo just short of 90 days. It was such a relief to come home but, again, I had new people coming to the house and "trust" issues began again. With homehealth, there is someone different every day.

My struggles have been many over the first couple of years. I mentioned them earlier. I continued with Neupogen shots, blood transfusions, bloodwork, and all the other doctor visits and followups at Mayo.
I had many emotions during my recovery; depression and trying so hard to stay positive, having to be isolated from so many family and friends due to germs as I came home during the gearing up of flu season. Just trying to stay "well." It was tough.

I mentioned that in 2013 I underwent scar revision, bile duct revision, and roux-EN-Y. I have recovered very well from all I have been through and healthy now. My issue now is weight loss. I struggle every day with this issue. I love food and, since I got my appetite back, it is very difficult. I am also an emotional eater. At this point, my weight is just above what I was at time of transplant. The weight has been stable for about 1-1/2 years. Can anyone tell me how this weight issue affects you?

I will stop for now as I know this is a long post. If anyone has ideas or questions, please let me know. I am glad to share my experiences with you all.
Later, CK.

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.

The procedures leading up to the 2013 surgery; this would have been the bile duct revision, etc. This surgery was difficult too due to the fact of all I went through prior. I had a lot of pain prior to and afterward. When I was released, we stayed at the hospitality house again. I was use to being elevated in the hospital bed. I came back to HH without a way to be elevated. I needed a wedge which we purchased and that helped so much. I wished I had thought of it during the time after transplant as it was very difficult to get out of bed. My ribs were so sore.

Of course, during the postop period, I had the button for pain meds and I used it this time. Those first couple of days, I was out of it most of the time. I did not want to travel home (3-1/2 hours away) with a belly full of staples. We stayed until my follow-up visit and then returned home. This recovery period was much easier than I thought it would be.
Later, CK.

I also wanted to talk about the kidney transplant patients I met who also had some problems with the new kidney not "waking up." Did any of you have this kind of problem after transplant. Of course, I had a lot of tubes running in and out of me including catheters. I also underwent dialysis pre and postop as I mentioned in earlier posts. When they decided to stop dialysis to see how the kidney was "settling" in and how much it was working, all I could do was pray. I prayed a lot during the whole period and still pray today and am so thankful and blessed to undergo this journey. As more tubes and such were disconnected from me and I became more "mobile," my depression lifted and worrying was less.

Until next time, CK.