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

Intensive Care (ICU) | Last Active: Sep 16 7:52pm | Replies (609)

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@afinegirl573

Not sure where to start. I had been in the hospital for 3 day after being diagnosed with pneumonia. I had been running a fever of 103 and started being sick go my stomach. I went to ICU and within minutes was told I'd intubated to make me more comfortable.

I woke up approx. 2 weeks later to find myself tied down and wearing a BiPap. I had been STAT flighted, they lost me on the way but brought me back just as we arrived but I flatlined again, they didnt think they were going to bring me back that time, nor the next. During those 2 weeks I had been Heavily sedated, had a blood transfusion, feeding tube put directly into my stomach, I was diabetic and my kidneys had stopped functioning. Diagnosis: ARDS. I fought the BiPap for 2 days before they put in a trech and for the next 12 days it kept me breathing while I was heavily sedated, only awake for approx 1hr a day If I had visitors. I experienced Terrifying Hallucinations up until a day or so before I was put in rehab (Well over 3 weeks) I had to relearn to write, walk, then to swallow and talk. Thankfully once I came off the ventilator I was no longer diabetic and kidney function returned.

I was let go from rehab Way too early (about 17 days) but I was overwhelmed with anxiety and my (now) ex-husband had only come to see me once with my 3 children. Mentally I couldnt stay I Needed my family so they released me once I proved I could walk up 2 steps without falling. Before I left I had so many nurses and even a Dr. come and tell me how they never thought they would see me alive again and what a miracle I was.. Seven weeks later my ex took my kids and left me with a friend. (That is a very simplified story of that time)

It's been 9yrs and I'm still suffering. I have PTSD, Anxiety, Depression, Minor Agoraphobia (all self diagnosed) and more physical issues than I even know about no doubt. I didnt recieved proper care in Any way after I was released. (That was my ex's fault) My body and mind seem to be continuing to break down. I lost my children, my Pride, and at one point my will to live. I used to be very intelligent, went back to college at 29 graduated 5yrs later after having my 3rd child with an Associates Degree in Science and Accounting Technology and a 4.0 GPA. I Loved to learn! My saying used to be: If you're not learning you're not living! Now I simply cant concentrate and feel I've forgotten the majority of what I learned in college. My memory was Terribly affected, so much of my children's lives I simply dont remember, but I can now seem to remember my own in ways I wish I could forget again.

I Just found out about PICS, it's a relief to know there is a name for it and that I am not Alone. However, thanks to this pandemic I am unemployed, been without insurance for approx 4yrs and I dont know what to do. Is there an end to this?? Thank you for reading my story.

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Replies to "Not sure where to start. I had been in the hospital for 3 day after being..."

Hi @afinegirl573 and welcome to Mayo Clinic Connect. I think many people who have been in ICU and have experienced after effects are relieved, like you to learn about post intensive care syndrome. Were you told about PICS from a provider or did you discover it here?

You may be interested in reading more about PICS in @andreab's blog series "Breaking it Down" in the PICS blog https://connect.mayoclinic.org/page/pics/

Afinegirl, are you in counselling? Do you have professional guidance to deal with the PTSD, anxiety and depression?