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Colleen Young, Connect Director (@colleenyoung)

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

Intensive Care (ICU) | Last Active: Dec 16, 2022 | Replies (586)

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@rosemarya

When I spent 5 days in ICU with sepsis, dehydration, acute kidney failure, and endstage liver disease, I was in and out of awareness. I was sometimes halfway aware of my surroundings, or activities happening to me and around me (only if I was moved, or a sudden noise). I have a partial recollection of the people and of the procedures. But I had no context time.
I have a vague recollection of being flown to another hospital. And arriving there. Although not in ICU, I was on the transplant floor at Mayo Methodist, and for the first few days, I continued to be in and out of awareness.
Later on, when I asked my husband, who is my caregiver, to explain to me what had occurred, I was shocked. So much had occurred that I didn’t even realize. And on top of that , my memory of it, was all jumbled. For a while this really bothered me. But now, as time has passed, (8 years) it is not a concern to me, anymore.
Rosemary

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Replies to "When I spent 5 days in ICU with sepsis, dehydration, acute kidney failure, and endstage liver..."

Rosemary-
Thank you for sharing part of your story. It’s reassuring to hear that the chaotic experience has faded some over so many years. How is your health since then? How is your husband doing? I’ve heard that memory loss and time gaps are common in people who are so seriously ill. Other than the passing of time what helped you get past it all?

@ssrn, Welcome, and thank you for your reply.
Stepanie, I am happy that by sharing my experience that I can offer you some reassurance. That is the purpose of Connect.
First, my husband. He is still very emotional about this. He had tears in his eyes tonight when I had him proof read my entry. You, see, for him I believe it is more difficult. He had to stand there, helpless, and watch me as death became a real possibility. While I was so sick that I did not fully comprehend.
Me, I am doing exceptionally well. I had a different experience than most. I needed a liver transplant and the complications from my condition led to my hospitalization that I refer to. I did get my liver and kidney transplant and now am living a full healthy life.
One thing that really helped me get thru the memory thing is the Mayo patient portal; I have access to all my medical records. I have spent many evenings, reading my medical history that occurred after the air transfer to Mayo. And I have soaked many Kleenexes with my tears during the process. I do not have any medical records from the first 5 ICU days, and that does bother me.
I think that as I become involved in other activities, that I don’t feel a need to “go back there”. I do continue to my quiz husband, or my 2 sons who were with me at various times. And my sons are very uncomfortable with that, too.
I do have some new issues with my memory, and with processing information. I seem to get confused or off task more easily. So I keep lots of lists! I really don’t know if that is from surgery, or from medication side effects, or age.
Stephanie, How long ago has it been since your husband had his time in ICU? How are you doing?
Rosemary

@ssrn, Stephanie, I want to share this with you.
This is what has happened to me after my reply yesterday: My well-thought-out-reply has stirred up the dust, so to speak, in my mind. Today I have experienced a “firestorm” of memories and flashes of events that occurred relating to my severe condition around the time and during my ICU care. My mind is racing everywhere. And tears are ready to flow. I thought that I was in control and had this all behind me, but my mind and emotions are telling me otherwise. This has not come on like this before. I wonder if this is anything like your husband has experienced or is afraid of experiencing.
Hugs and Strength,
Rosemary

Rosemary-
I flew off a 4-wheeler and hit my head and broke my wrist. I went to the ER but no CT scan was done just put on pain meds. I do not remember that week. This happened Aug 8th last year, I woke up in the ICU having a breathing tube taken out, that was Aug.21st. The day before they were going to take me off life support. I woke up so confused, no idea what had happened, where I was. I was in the hospital about a month but since then I feel so "disconnected", I remember bits and pieces of my stay, I have flash backs of dreams, Vague weird things I experienced when I was in a coma and shortly after. It is so hard to explain I just feel different. My life is different. I am seeing a counselor, I am now on a transplant list and on Dialysis 3 days a week. I just don't feel " grounded". It is so hard to explain. I am here but not here most days if that makes sense. The whole events that took place are so mind boggling. They had to write in a notebook things that happened , like being flown to the hospital, because I kept asking. I read " good -bye" notes from my boys friends, I was treated as though I died and I struggle with relationships, dreams, flashbacks..lots of things. Jumbled memories,visions. Any suggestions. No one seems to understand

Hi @beitel,
Welcome to Connect. With all that you've been through, your comment about, "I am here but not here most days…" makes complete sense! I'm confident that @rosemarya and other members in this group will return to welcome you, but in the meantime, @beitel, would you share a few details? Were you in the ICU due to kidney-related or other issues (since you mentioned transplant and dialysis), or after the accident?

@beitel, With all that you have been through, it is no wonder that you feel different. So much confusion and unanswered questions is, from my experience frustrating at the very least. I have posted some information about PICS in another reply to you. As a transplant recipient, I will be checking in and listening as you provide some details to Kanaaz.
Becky, How old were you when this happened?

After my accident and hitting my head I do not remember that whole week. I was on pain meds and I was not myself all week I guess, vomiting and such and then they did surgery on my wrist a couple days later and I just never recovered. They sent me home and the next day my family said I was out of it and not waking up. They called the hospital and said I maybe had to many meds. I got to the ER and it was there I became unresponsive and they put me on a ventilator and airlifted me to the hospital in ICU. I was treated for TTP/aHUS, a rare blood disease where your blood cells burst into chards , that is what damaged my kidneys. They do not know how or when I got it. I was getting 30 bags of plasma a day and blood transfusions when I was in a coma

Rosemary I am 43, 42 when this happened, I am coming up on my 1yr.

Oh my goodness. That is horrible. I pry they can control this for you. I am praying for you.

@beitel
I also was transferred by air. From local ICU (where I would have gone to hospice care) to Mayo where I spent time in hospital with liver and acute kidney failure (caused by failing liver). I was never in a coma, but I was not awake or fully aware of my surroundings either. And I have experienced some very emotional times. I have grilled my husband about the events, and my sons, but they do not like to talk about it, even now nine years later. I am not bothered much by it anymore because new memories are taking over.

Becky, you were so fortunate to receive treatment that saved your life.
Is the blood disease treated and cured? Or is it still in your system? Will it have any effect on receiving a kidney transplant?