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Sun, Sep 15 6:05pm · Post-Intensive Care Syndrome (PICS) - Let's talk in Intensive Care (ICU)

*content warning for mentions of a suicide attempt, please read with care*

I've posted in this group several times, but until now, I haven't shared my story. Today, I'd like to do so.

I landed in the ICU in January 2019 following a suicide attempt. I was initially partially paralyzed, unable to move my arms or legs, was expected to stop breathing (I gave consent to be put on a ventilator, and was in acute kidney failure, requiring emergency dialysis.

The cruel irony of my attempt and it's aftermath is that it was my unbearable PTSD symptoms that led me to try to end my life. I was so traumatized already, before the ICU – and my terrifying time there only further traumatized me. For me, the worst of my ICU trauma isn't about invasive procedures or interventions, but rather about the loss of control over my body and the things that were done to it to save my life.

I left the ICU in kidney failure, a dialysis catheter in my neck, and most devastatingly, unable to walk due to neuromuscular damage. I spent five months as a full time wheelchair user, and currently have progressed to using a walker.

I struggle with immense guilt over my responsibility for making my life so much harder and inviting in this additional trauma. I'm addition to this guilt, I struggle with frequent flashbacks and nightmares of my time in the ICU. Eight months out, these symptoms have improved, and I've been able to do EMDR (a type of trauma reprocessing therapy) to help reduce the flashbacks – but I still deal with them on a regular basis. Because of my neuromuscular damage, I find that it is a near-constant reminder of my ICU experience. Often it feels like I can't escape it.

My mental health has been greatly affected by this experience and my difficult recovery. I have bounced back from a lot of things in my life – yet I am having an extremely hard time bouncing back from this. I'm currently in intensive mental health treatment to try and cope with what has undoubtedly been the most challenging and discouraging year of my life.

I am so grateful for this group and for the support I've already received, and to know that I'm not alone in struggling to make sense of these experiences. Thank you for letting me share, and thank you for listening.

Fri, Jul 12 8:13am · What did you find most surprising once you were out of the ICU? in Intensive Care (ICU)

Welcome! I'm new to this community too. Thank you for sharing a piece of your story. I know that this page has already offered me a glimpse of hope, as I now know that I'm not alone. I hope that you can experience this too. Take care.

Sun, Jul 7 8:00pm · What did you find most surprising once you were out of the ICU? in Intensive Care (ICU)

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.

Sat, Jul 6 7:07pm · What did you find most surprising once you were out of the ICU? in Intensive Care (ICU)

Thanks for your response and for sharing your experience. I'm sorry that you've encountered some of the same barriers. That's great that you have some connections to the nurses who cared for you. I find myself wishing I could talk to mine. As far as getting answers, I'm currently working on writing down everything I remember. I'm considering obtaining my medical records and asking a close friend who came to visit what she remembers to help me put those pieces together, like you said.

Sat, Jul 6 6:58pm · What did you find most surprising once you were out of the ICU? in Intensive Care (ICU)

I was in the ICU in January of this year, and was discharged from the hospital in February. As for the neuromuscular weakness, we expect that it will be reversible with intensive PT. I've already come a long way in my healing, although I've also had some setbacks that factor into the weakness I still experience – in February, while still in the hospital, I fell and fractured my tibial plateau, which complicated my recovery as I couldn't bear weight on that leg. I'm starting to transition out of being in my wheelchair full time and to using a walker part time, but still have a ways to go. I have found help from the mental health treatment I was already seeking for PTSD unrelated to my PICS (that I do believe made me more vulnerable to PICS). I've received both outpatient and inpatient help in managing my psychiatric symptoms as I physically recover.

Fri, Jul 5 7:11pm · What did you find most surprising once you were out of the ICU? in Intensive Care (ICU)

I am new to this community and to connecting with others who have survived the ICU. Reading other's experiences has been so helpful, so thank you all for sharing. I feel so much less alone. Similar to what others have shared, what surprised me most was the lack of education on PICS upon discharge, and the continued lack of awareness from my healthcare providers. While I was still in the ICU, the psychiatry team told me my experience could be accurately described as trauma. That was the first and last time anyone checked in about how I was doing beyond my lab values and organ function. There was no follow up from that conversation, no post-ICU clinic, and most surprisingly, I had to discover PICS through my own research and bring it up to my doctors, despite presenting with flashbacks, nightmares, and other intrusive re-experiencing symptoms of my time in the ICU, in addition to having ICU acquired neuromuscular weakness that has left me using a wheelchair. I couldn't believe that all of this, including the emotional and physical effects are not only named, but common! How is there not more awareness? I'm doing my best to educate the people around me as I heal and process my own experiences, hoping that maybe I can help someone else.