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Hi Alex — Yes, it's helpful to create your own chronology, and getting your medical records will help a lot. I was in the ICU in January 2018. I had not been sick before being hospitalized, and it was an overwhelming shock to discover later that I'd been critically ill for days — with no memory of it. Then the after-effects were profound. Terrible weakness, confusion, exhaustion, anxiety, depression — and all completely unexpected.
Thus it was some months later before I was mentally strong enough to face seeing the official account of what had happened to me.
My records were free in electronic form — and I'm so glad I got them. That's for several reasons. First, they gave me a timeline beginning with emergency intubation in the ER and ending with discharge. Second, they gave me profound appreciation and respect for the medical professionals who round-the-clock really pulled out all the stops to save my life.
And third, they gave me important information I hadn't received when I was discharged. Neither my doctor nor my discharge papers mentioned I'd had severe sepsis and septic shock — important things to know as sepsis survivors have an increased risk for repeat sepsis. I only learned I'd had near-fatal sepsis (and acute kidney failure and other serious conditions) when I read my medical records. For my own protection I needed to know this.
And also for my own recovery. Like so many survivors I was discharged with scant follow-up. I discovered PICS on my own; I had to craft my own recovery plan because my doctors had no clue about PICS and offered no help for it. My hospital records helped me do that.
(Currently helping me is the book "After the Diagnosis: Transcending Chronic Illness" by Julian Seifter, MD and Betsy Seifter, PhD. It's really good!)
My records also helped straighten out confusing stuff. My poor family and friends had been so traumatized by my near-death that their memories were understandably unreliable to varying degrees. The records helped sort out the confusion of what really happened.
Quite by accident I discovered my hospital kept multiple sets of records. The first ones I got were the abbreviated version. Not a lot of information. Later I learned that I should ask for the complete nurses notes and the doctors notes. I did, and that's where I learned about sepsis. So if you ask for your records, make sure you get the most complete, thorough version. All the medical terms will make it heavy wading, but that's why God created Google, right? Just google the terms and you'll learn a lot.
I have next to no memory of being in the ICU, so I didn't know who took care of me. Thus I had no one to ask for when I screwed up my courage and many months later returned to see where I'd been. I needed to see it for context as I had none. I needed to see it to master the trauma I'd been through. A couple of ICU nurses kindly talked to me and reassured me. Just talking to them and hearing their compassion was so helpful! I'm glad I went back.
Finally, you might ask anyone who visited you in the ICU if they took any pictures. Two of my family members did, but they didn't want to tell me for fear of traumatizing me. I asked to see the shots anyway, and seeing myself intubated and surrounded by so much medical equipment made the situation very, very real. I could see what I went through. And I knew why I had a right to be so very grateful to be alive.
Peace and best wishes for your recovery. It will take a while, but it will come. You will be strong again.

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Replies to "Hi Alex -- Yes, it's helpful to create your own chronology, and getting your medical records..."

Wow sounds like you went through alot. I hope you are much better now and may i ask how long after ICU did you begin getting stronger and back to normal? My mom said she kept a day to day diary for me but i am not ready to see it as its still very fresh for me and i want to heal fully before i see that

It sounds like we had similar experiences – I am a severe sepsis/septic shock survivor. I’m glad I’m not the only one that tries putting pieces together by looking at records. I’ve seen several lab reports, my admitting ICU doctor’s report from the night I was admitted (to that hospital) and the reports from when I coded post ICU. I would love to get the reports from the first hospital. My husband also took notes and journaled.
Thank you for sharing – it truly helps to know there are others like me.

Thank you for your response and for sharing parts of your story and how you have worked towards healing. The narrative of what I remember (which is quite a bit, as the use of sedation was limited, although my mental status was definitely altered at times) is my starting point. When I feel ready, I think my medical records will be helpful in further understanding what I endured and clarifying the discrepancies that have come up in what I've been told and what I remember. While I asked a few questions along the way (such as what medications I was being given and where my central venous catheter for dialysis went within my body), I also was afraid to ask many things because I was afraid of the reality that I was almost certainly going to lose my life. Between how ill I was and my sheer terror, I wasn't very talkative. A lot of things weren't explained to me. For example, the process of dialysis was explained as it happened, but the fact that I was in acute renal failure was never actually stated until I saw my discharge papers. Somehow I never put two and two together! I have a very limited understanding of things like why I experienced paralysis or why they expected my respiratory collapse and obtained consent to intubate me. I remember two of the nurses from the ICU by name, one of whom held my hand while I finally broke down and cried after it was clear that I would survive the ordeal. That gesture meant so much to me. I'd love to talk to them. Perhaps I will look into that. I definitely plan to talk to my friend who visited as well. I took some photos myself as I recovered to try and document the experience for myself, the earliest of which have come to be significant to me. They are concrete proof in a sea of hazy memories and unanswered questions. Thank you again for sharing your experience and your advice – your suggestions are helpful things to think about in my own process of healing.