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

Hi @lynngs44 I’m sorry to hear that your new heart is failing. Facing the end must be so hard for your entire family. May I ask how old your daughters are? How are they dealing with this unfair reality?

Hello. Thank you for your kind words. Unfortunately, with the pancreas transplant failing and all of the complications, we've been down this road before but this time is very different. My heart has been perfect since the first day I received it seven years ago so I was shocked to learn it is now failing. My daughters are 22 and 26 so that additional seven years that I've had with them has been such a miracle. But yet even now, they still feel so young and still need their me in their lives. I began keeping a notebook for them, writing things down, thoughts, recipes, just everything I know they will one day wish they had. It's devastating for all of us but we just keep making the most of every day we have together.

My name is Holly and last november I suffered a severe medical event that started with a week of psychosis and delirium at home. I was taken to a&e, became extremely violent and was sedated. That sedation led to a medically induced coma that lasted 2 weeks. They did cat scans, mris, lps and nothing showed. The first week of my sedation was too light and I was in and out, kicking my legs violently in the bed. The second week they kept me under with more medication and I was pumped full of a list I have never been able to get hold of but it was extensive. They tried to wake me up several times but I became violent and they sedated me again. They managed to take the tube out once but I developed stridor and it was placed back in urgently. I went through never ending nightmares, visions, terrifying things I re live daily while under. Some of what people said to me came through but I was so confused, in the visions they were mutilating me, I was begging for death. The only thing I managed to say during sedation, I looked my mother in the eye and told her I was going to die.
Since the coma I have developed agoraphobia, my cptsd let's me relive these memories daily. I have weakness of limbs and constant stinging in several parts of my arms, as my veins collapsed they were not able to place iv lines in and they just kept trying, I was hysterical by the 20th attempt. I picked up a bug in icu and they couldn't get the antibiotics in as they only come in iv form, the last line of defense against a super bug.
When I was moved off of icu onto a ward at around 1 am they tried to refuse me entry as previously I had only been able to stand once with the occupational therapists, and the requirement for the ward was I could get myself to the toilet. I demanded a walker and I got up and walked - i will forever be proud of myself for that moment of defiance and determination. That first night in the ward i developed a fever, as the super bug was taking hold, and I was strapped down to the bed with a sheet and the light turned off when I pressed the bell and begged for help. They then forced an iv in to my arm blew a vein and pumped me full of fentantl to calm me down.
I managed to escape the hospital with the help of the perinatal mental health team the moment the infection was cleared from my system, I begged them to let me go as I have severe ptsd from hospitals from before this episode and I was terrified, I hadn't slept for more than an hour in weeks.
Im sorry for rambling. I hope someone is able to relate to this experience because I feel so alone.

Is this the same as critical care weakness? I was diagnosed with that after 2 months in ICU. I was intubated the majority of the time and then had a trachy but have no memory of any of it. I do however remember a dream that I think I had during the time. My husband has said it was an awful time. Apparently I can be a little combative