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

@chattykathy You have been so through so much yet your spirits seem strong. That's quite admirable. I am glad things are going well for you now. What is scar revision? I would really like to have my belly apron removed surgically since when I had such huge fluid retention I stretched more than ever so it hangs a lot now. Don't know if insurance would pay for it though.

I too yoyo dieted all my life and am now at a weight lower than I had been at in many, many years. I really am a food addict and if I have a little of something I want more. I have found myfitnesspal.com online to be a huge help. It makes you accountable so you are less apt to have that little this or that. You know if you lie when you input your consumption that you are only lying to yourself. Between that, a fitness monitor that keeps me active, and an accurate, precise scale (it wasn't as expensive as it sounds, a Tanita on Amazon under $50 a few years ago, and to me well worth it) that estimates BMI and fluid retention. I know those last two measurements depend on each other so on days when I have a large fluid retention, like when I had ascites, my BMI would read in the teens, but on days when my fluid retention is low my BMI is high.
I strongly recommend these tools to aid in weight reduction. I am still using them to try to keep the weight off, not an easy task. If you know other people using myfitnesspal you can be friends on it and see each other's data which I would suspect would help too. If anyone here wants to try it I would be happy to have friends on it.
Jane

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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.

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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.

Jump to this post

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.

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I would also like to mention that with all the weight loss after the transplant, I did not feel normal. Everyone told me the weight loss was great, but I lost too much too fast. I still had the "sick" look about me.

I was hurting in the right side when I got up and down but thought it was just the routine of healing and so on. This pain was pain from the bile duct. I underwent CT scan but nothing was found by local radiologist. So I continued on until my next checkup at Mayo and that is when bile duct problem was found.

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This is a brief overview of what brought me to Mayo Clinic Hospital. May 1, 2016 I was flown from another hospital emergently to St. Mary's Hospital in Rochester after a traumatic intubation at another outlying facility, after I attempted to die by overdosing with hundred & hundreds of pills (April 29, 2016). This resulted in a tracheal tear. (I was in 3 hospitals in under 36 hours). The tear was over 2" in length. It was found no one had lived from an injury such as mine. I was admitted to CICU because the ET tube was 1/2 in the trachea & 1/2 outside of it allowing subcutaneous air surrounding the organs & compressing the organs, but my heart was having the most problems at that time. I had a tracheotomy done to place a trach in & allow the air to slowly escape. At that time an ET tube was inserted through the trach & mouth so each lung could be ventilated. The Surgeon who accepted me researched procedures & found there was none documented. She & her team came up with one & surgery was May 3, 2016. An incision was made just under the right scapula, above the 4th & 5th ribs under the axillae to the breast crease. The 4th rib was removed & the 4th & 5th rib muscles were drawn through a window to rebuild the trachea. My lungs couldn't oxygenate my blood so was put on ECMO. I remember nothing except a few small things from the day I overdosed. I have a few snippets of memories, brief seconds of lucidity, but remember the dreams and nightmares so very vividly. I can even still feel them & the emotions they elicited. It's almost impossible to explain them to anyone. When I was allowed to come out of sedation I couldn't lift my head, arms, or legs. I was terrified. I was on ECMO approximately 2 weeks & the ventilator for 2 1/2 weeks; I was decannulated May 27th just before being transported to another Mayo facility for swing bed rehab.

It's been a year of firsts for me. Being able to think clearly, make good decisions, not living in the black hole of depression & building a life worth living are all things I'm doing for the first time in 15 years.

It is my heartfelt desire to meet the team of professionals who saved my life & thank them for their part in returning life to me. I want them to know they didn't put "Humpty Dumpty together" so I could kill myself. I want them to know I have not thought about hurting myself or ending my life. I need to do this to start the next chapter of my life & close this one. Have any of you done this? I went back to St. Mary's & met & thanked some of my nurses; it was so cathartic to do this. They remembered me, we cried together.

I have some more questions to ask but maybe I will find the answers as I continue to read everyone's posts. Thanks for allowing me to talk. I don't have anyone to share with who would understand my thoughts & feelings.

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I would also like to mention that with all the weight loss after the transplant, I did not feel normal. Everyone told me the weight loss was great, but I lost too much too fast. I still had the "sick" look about me.

I was hurting in the right side when I got up and down but thought it was just the routine of healing and so on. This pain was pain from the bile duct. I underwent CT scan but nothing was found by local radiologist. So I continued on until my next checkup at Mayo and that is when bile duct problem was found.

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