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

Have you heard of Post-Intensive Care Syndrome? Sometimes it’s called post ICU syndrome or PICS. PICS is defined as new or worse health problems after critical illness. These problems can affect your mind, body, thoughts, and/or feelings.

On Connect we would like to bring together people who have been affected by critical illness, and hopefully lighten the burden you bear. Patients and family members welcome.

Grab a cup of tea, or beverage of your choice, and let’s chat. Why not start by introducing yourself?

@jslate

@rosemarya @janegigi Thanks for responding! I think the hardest part for me, aside from the physical pain of whatever autoimmune disease I have (we don’t know for sure, and we don’t have insurance, so all we can do right now is wait and see), is the fact that the rest of the world moves on while I’m still reliving those hellish two months over and over and over. Don’t get me wrong, there were a couple of wonderful doctors who went above and beyond—who definitely searched past Critical Care Myopathy to determine why I got so sick so fast, why my body didn’t fight off the subsequent infections that came after the initial flu that landed me in the hospital to begin with and why I went septic. But having to learn how to walk, swallow, etc., was all extremely terrifying and yet my immediate family doesn’t quite get how traumatic it all was. I did see my neurologist (I had epilepsy prior to this, onset when my five year old son was just a year old) did warn me that it would take me at least a year before my brain was fully healed, and to expect things like memory loss, fogginess, impaired judgment at times, and so on. He said we’d reevaluate everything 12 months from my discharge (I was admitted in my hometown but after the first week I was flown out while in a coma to the trauma unit at UAB in Birmingham, AL).

Words and terms like klepsiella, blood transfusions, bowel management system, staff, delirium, encephalitis, chest tubes….keep rolling around my head like loose marbles. I want to scream them into my pillow. I’m still coughing up phlegm. I’m still breathing with damaged lungs. I wake up, heart racing, expecting to be unable to move even the tips of my fingers. All I could remember was going to the first hospital, waiting there while they did exams and said I had double pneumonia (how, I thought? I only have a low grade fever and no cough). Then they ran a blood cell count and panicked. White blood cell counts like that look like leukemia. There was no room at that hospital but the doctor suggested heavily to my father and husband that a bone marrow biopsy be done, and quickly. They transferred me then by ambulance to hospital number 2, and all I recall is being checked in, vaguely being wheeled to a room to meet my father, then being told that because I had a communicable disease, they were isolating me. It’s lights out from there. Next comes what feels like months. Bizarre happenings, weird things that I can’t begin to put into words. They were all related to being in a hospital so it had to be delirium. Then I slowly wake up and figure out I’m paralyzed and that none of it was real, and that the medically induced coma (the coma was about two to three weeks) wiped out two full days of me being conscious and aware—texting and talking to loved ones prior to the coma, just poof—gone from my memory, along with about two days after being “woken up.” I have no recollection of my parents’ visit, despite interacting with them in some fashion (dad says he knew no one was home). I read those text messages later horrified. Was I scared of possible intubation? I must have been. I’m haunted by this. Why didn’t the psychologist at UAB discuss PICS with me? Hyperventilating on a ventilator isn’t much fun, I can assure you of that. It’s like running up the down escalator. It gets you nowhere and everybody stares. And I did have a tracheostomy. That sucked. Suction was for the birds.

So, I’m long winded, but thank you for listening. Honestly. I would love to see a therapist but being that I am already going to have to claim bankruptcy, and now have no income (poor hubby the breadwinner), I don’t have that option at the moment. I’ve applied for disability, but gracious the forms are daunting. It’s like they don’t understand that my brain isn’t fully functional and therefore I’m not capable of filling out 900 pages. You’d think the three interviews would have been enough. But I digress. Thank you for listening.

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My illness was brought on by the flu as well. I had been healthy, then for a few days I was feeling puny until I woke up with a high fever, my husband took me to the doctor who called an ambulance. I remember being in the ambulance, but I lost consciousness in the ambulance and didn't wake up for four weeks. I had H1N1 flu and double pneumonia. I was a non smoker, non drinker, hiker, etc. now I'm fighting for my life. I was first placed in a medically induced coma for a few days, but then I wouldn't wake up. So I stayed in a coma for four weeks altogether. I was intubated, then had a tracheostomy. I had the trache for a few weeks even after i woke up. During the time I was in the coma, the organ donation were called. That's how I'll I was. I also had a pulmonary embolism, blood transfusions, kidney failure and dialysis, paralysis, and on top of that I heard the doctor say they found an ovarian cyst unrelated to my illness. They said they couldn't operate bc I would not survived surgery. About a year later I didn't have surgery and it was benign. I also had to relearn to walk, and relearn to use my hands, relearn swallow. Sunctioning my trache was horrific. They aren't gentle. They don't address you by name in ICU. That really bothers me. I was conscious long before they realized it but they didn't know it. The staf talks about you, but rarely to you. Yes, I had hallucinations, but many things I recognized such a nurse I had previously worked with was my case manager. That was not an hallucination. Even after my discharge, some medical personnel were not kind to me. Some tried to tell me I was not that ill. 55 days in the hospitals – huh? One nurse told me my illness was caused by the devil. I reported her. One doctor called me a liar, I was making up my story. I reported him. So do not hesitate to report anyone who treats you like that. That is unprofessional. My ICU doctor told me PTSD or PICS wasn't a thing and I needed to 'forget about it'. My husband who is a Vietnam combat vet said, he has PTSD and it has taken him 50 years to have peaceful night's sleep. He shut up after that. I'm five years out from my illness, so I have gotten stronger emotionall, but it has been a battle. Of course, you're ill physically and still trying to recover, but the nightmares haunt nightly. They did get better. I write about my experience, I volunteer with Girl Scouts, I sew, I do photography, but I still have a lot of fears. Some I know make no sense, I fear driving, crowds, of course hospital and doctors offices. I fully understand how you are feeling. Some days I cry. Some days I am happy, some days not. Hugs.

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@rosemarya

@deltakay, I want to introduce myself and say "Welcome" to Connect. I spent a brief period of time in ICU 10 years ago. It was difficult for me afterwards as I had memories and memory gaps that taunted me. For a long time, I had difficulty even talking about it, and some friends/family would say that I shouldn't let it bother me – that I should just get over it. Your experience is real, and I understand the feelings that you are having.
I want you to erase the notion that you are "not normal anymore" from your mind! There is no question that you have had more than your share of difficulties, and both you and your family are facing many challenges. The determination and goals that you had prior to this event show what kind of inner strength that you possess. Many folks who have encountered barriers like you are experiencing say that time helps. And they develop a "New Normal" that involves learning to live with whatever limitations are and continuing to be proactive in care and treatment.

I hope that some day you will be able to share your new normal as an example to others who are like you.
You mentioned seeing a hematologist, as well as other health conditions. I want to encourage you to look at the discussion groups on Mayo Connect, and to meet others who are facing some of the same health issues. As a member you are invited to participate anywhere. https://connect.mayoclinic.org/groups/

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@rosemarya Thank you for your kind words and thoughts. It feels comforting to know that other people understand. When faced with my own mortality I am forever changed. I will look at other conversations including depression, on this Mayo Connect. All of my ICU Staff were lovely. So I’m chalking it down to maybe knowing too much. The PA that sent me home misdiagnosed to die, I often wonder what purpose I still have here. If I didn’t make that decision to get a second opinion, I wouldn’t be here. I have so much anger for the PA that misdiagnosed me and it was neglect. I asked if the medication was causing my symptoms (Steven Johnson’s Syndrome), she said to keep taking it. It’s hard to have faith in a system that fails so often. I’m still trying to understand, and rid myself of the anger and confusion. It seems to come in waves. Thank you for your kind and thoughtful reply. -Kay

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@rckj

@rosemarya and @colleenyoung hi Rosemary and Colleen. A bit scared right now. I have a congenital corneal problem called corneal dystrophy. I’ve had multiple laser surgeries as my corneas won’t heal on their own and can spontaneously tear and need repair. They have been ok for a while but today are showing signs of deterioration. Off to the corneal specialist. But I haven’t been on Coumadin for this problem before. Will tell ophthalmic surgeon today. Surgery wouldn’t be right away any way. But very anxious. Getting advice from the Coumadin/Warfarin team. Not much else to do except wait and see what they say. I seem to defy the unwritten rule of only one genetic disease at a time! This practice is really great and have saved my vision numerous times. Just really anxious. Hoping for the best for me and all of us.

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Hi @rckj, I can imagine that you're anxious and scared about this new challenge. Thanks goodness you have an excellent team.

You might wish to talk with others in the Eye Conditions group: https://connect.mayoclinic.org/group/eye-conditions/
In particular, I think you might appreciate this discussion:
– Low Vision: Let's share about coping day to day https://connect.mayoclinic.org/discussion/low-vision-1/

There are few corneal dystrophy related discussions too.

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@colleenyoung

Hi @rckj, I can imagine that you're anxious and scared about this new challenge. Thanks goodness you have an excellent team.

You might wish to talk with others in the Eye Conditions group: https://connect.mayoclinic.org/group/eye-conditions/
In particular, I think you might appreciate this discussion:
– Low Vision: Let's share about coping day to day https://connect.mayoclinic.org/discussion/low-vision-1/

There are few corneal dystrophy related discussions too.

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@colleenyoung thank you for the links to vision related issues! As I suspected, my corneas have begun to destabilize. No surgery yet, just watchful waiting and supportive treatment. Various drops and ointments and bandage lenses. As usual, I always get the warning that this could, at some point, progress to transplant. It all just feels like too much. I will connect to the low vision and the dystrophy groups on the vision site. These support sites have been of such help to me. Thank you again. Rhoda

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@deltakay

@rosemarya Thank you for your kind words and thoughts. It feels comforting to know that other people understand. When faced with my own mortality I am forever changed. I will look at other conversations including depression, on this Mayo Connect. All of my ICU Staff were lovely. So I’m chalking it down to maybe knowing too much. The PA that sent me home misdiagnosed to die, I often wonder what purpose I still have here. If I didn’t make that decision to get a second opinion, I wouldn’t be here. I have so much anger for the PA that misdiagnosed me and it was neglect. I asked if the medication was causing my symptoms (Steven Johnson’s Syndrome), she said to keep taking it. It’s hard to have faith in a system that fails so often. I’m still trying to understand, and rid myself of the anger and confusion. It seems to come in waves. Thank you for your kind and thoughtful reply. -Kay

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I understand your anger. Five years later, I still have anger that the ICU staff allowed a male stranger in my ICU room while I was in a coma bc he said was a pastor. He was not. They didn't ask my family. He was an intruder. I'm terrified of hospitals now. It was against JCAHO and I filed a complaint against the hospital. JCAHO agreed with me. Worse part I used to work for that very hospital! It was a huge violation. I'll never know what he may have done. So you have every right to feel angry. I tell everyone you gave to be own doctor. And you have beware of hospitals. You are not safe.

Liked by deltakay, kristap31

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@janegigi

I understand your anger. Five years later, I still have anger that the ICU staff allowed a male stranger in my ICU room while I was in a coma bc he said was a pastor. He was not. They didn't ask my family. He was an intruder. I'm terrified of hospitals now. It was against JCAHO and I filed a complaint against the hospital. JCAHO agreed with me. Worse part I used to work for that very hospital! It was a huge violation. I'll never know what he may have done. So you have every right to feel angry. I tell everyone you gave to be own doctor. And you have beware of hospitals. You are not safe.

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@janegigi
I am so sorry that you had that experience. That is never ok. You have every single right to be angry. And I agree, we have to advocate for ourselves. Two hospitals discharged me with a perforated colon, and I was sent home with Steven Johnson’s Syndrome. It has always been my dream to be a NP, how could I go back? I had a blood clot and told them I’ll not be admitted. I avoid the hospital at all costs. My Grandma just passed I watched her take her last breath. I feel comfortable with her not being alone, but I feel triggered. It’s been a huge setback and no one in my family understands. Thank you for sharing with me.

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@deltakay

@rosemarya Thank you for your kind words and thoughts. It feels comforting to know that other people understand. When faced with my own mortality I am forever changed. I will look at other conversations including depression, on this Mayo Connect. All of my ICU Staff were lovely. So I’m chalking it down to maybe knowing too much. The PA that sent me home misdiagnosed to die, I often wonder what purpose I still have here. If I didn’t make that decision to get a second opinion, I wouldn’t be here. I have so much anger for the PA that misdiagnosed me and it was neglect. I asked if the medication was causing my symptoms (Steven Johnson’s Syndrome), she said to keep taking it. It’s hard to have faith in a system that fails so often. I’m still trying to understand, and rid myself of the anger and confusion. It seems to come in waves. Thank you for your kind and thoughtful reply. -Kay

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I would recommend trying to find a therapist. That has helped me the most. But if the first one you see doesn't 'click' don't hesitate to move on. The first one in I saw tried to convert me to her religion. That was a big no for and highly unethical. I could have reported her. But I just moved on instead. I did find a really good one instead. I would look for someone who treats PTSD.

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@muriel66

@amandacgrow
Hello, Amanda.
It is likely that you have little time to care for yourself, while raising young children and upholding employment. In response to your interest in ways to heal the inner-self, I tell my story. Please do not take my actions for inward healing as prescriptive, as expectation, as imposition!

To heal my inners sorrow and fear, I needed psychological care from a licensed psychologist. Though at times, I did not feel he fully understood me, it was a tremendous benefit to talk weekly with a professional, compassionate caregiver. If you were to enlist this type of care for yourself, I suggest you see someone who not only understand the inner affects of physical trauma, but also someone who acknowledges the importance of grieving. The referral to see a psychologist was made by my primary care physician in my hometown.

I need spiritual care. A hospital chaplain began that care for me, and now I am fed by being with other believers in my hometown. Spiritual care swells through the love of the congregation, who accepted the 'new me' without placing expectations on me. Though the pastor, where I worship, seems unable to accept the limitations of my 'new life', she is supportive.

I also post spiritual statements in the house for me to see and quietly repeat. These remind me of God's divine presence and strength. It is by searching God for 'the new life' God gave me, that joy slowly grows within me. I now feel like I am on a treasure hunt with God, since I now know I cannot control life. Sudden severe septic shock clearly demonstrated that to me! Anyway, my previous attempts to control life were never satisfying.

I also practice a new mental skill for me. For a while, it was difficult to do, but has become easier over time. It is the mindset of 'living in the moment'. When I am overwhelmed or agitated, I remind myself to focus only on the moment or only on the day I am experiencing. Mayo Clinic has resources that help to understand and to encourage 'mindfulness'. Perhaps Annie Johnson can give you a link to resources. It is by 'living in the moment' that joy slowly returns to your heart and mind.

There are several other possibilities, but I do not want to overwhelm you. Again, the steps I take were ones I need. Over time, I hope you will be able to tell the practices that will assist you to heal inwardly, Amanda. Let's stay in touch. I am available to support you.

May a sense of inner-peace arise within you, even if for only a moment, as you live today.
Muriel

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@muriel66 Today I re read the messages you sent me almost six months ago. I feel deeply grateful for your insight, which has been so important in my own healing. I am moving forward in my life, trying to be kinder and more patient with myself through the long road of healing. I just wanted you to know that I am thinking of you and hope that you are well in your own journey of healing. From Amanda

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I don't know if my story fits exactly with this post, but I have not met anyone else who can relate at least a little to what I deal with. My son was a previously healthy 6 month old baby when he went into multi-organ failure last summer. The cause remains unknown. He was at an excellent Children's Hospital and spent five weeks in the PICU (pediatric intensive care unit) then two months total in the hospital. Five weeks is a long time to live in the PICU. They called it the "fish bowl" because the walls are floor to ceiling glass and there is no privacy. Codes went off multiple times a day, and each time I wondered if someone was about to lose their child or baby as PICU staff went running (walking very fast) past our room. The flight for life helicopters landed multiple times a day on the landing pad above my son's room, bringing children in critical condition. Four of the friends we made last summer all lost their children. We spent precious time together, eating together, sharing our deepest concerns and most intense moments. My son came extremely close to death. His kidneys shut completely down, his cardiovascular system, liver, intestines, lungs…He was intubated for many weeks on CRRT (continual dialysis which is actually not even made for babies his age but saved his life). It was absolutely terrifying. I am grieving the death of my friends' children and don't know how to do that. When my son was discharged (9 surgeries, a colostomy, feeding tube and paralyzed foot later) it was surreal. No one in my small town can relate to the trauma we went through. We have been incredibly supported, but not having anyone who "gets" it has been hard. The hospital he was at does not have an online support system like this which I think would have been quite helpful. I fight fear all the time and am trying not to be paranoid for him. I think more studies are coming out which show that parents of PICU kids face traumatic stress…my son seems unscathed emotionally which is wonderful! I however am struggling!

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@kristap31

I don't know if my story fits exactly with this post, but I have not met anyone else who can relate at least a little to what I deal with. My son was a previously healthy 6 month old baby when he went into multi-organ failure last summer. The cause remains unknown. He was at an excellent Children's Hospital and spent five weeks in the PICU (pediatric intensive care unit) then two months total in the hospital. Five weeks is a long time to live in the PICU. They called it the "fish bowl" because the walls are floor to ceiling glass and there is no privacy. Codes went off multiple times a day, and each time I wondered if someone was about to lose their child or baby as PICU staff went running (walking very fast) past our room. The flight for life helicopters landed multiple times a day on the landing pad above my son's room, bringing children in critical condition. Four of the friends we made last summer all lost their children. We spent precious time together, eating together, sharing our deepest concerns and most intense moments. My son came extremely close to death. His kidneys shut completely down, his cardiovascular system, liver, intestines, lungs…He was intubated for many weeks on CRRT (continual dialysis which is actually not even made for babies his age but saved his life). It was absolutely terrifying. I am grieving the death of my friends' children and don't know how to do that. When my son was discharged (9 surgeries, a colostomy, feeding tube and paralyzed foot later) it was surreal. No one in my small town can relate to the trauma we went through. We have been incredibly supported, but not having anyone who "gets" it has been hard. The hospital he was at does not have an online support system like this which I think would have been quite helpful. I fight fear all the time and am trying not to be paranoid for him. I think more studies are coming out which show that parents of PICU kids face traumatic stress…my son seems unscathed emotionally which is wonderful! I however am struggling!

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I worked for PICU physicians in an administrative capacity for years, so I know a little bit of what you're going thru. I often think my work helped me later me when I became ill. Yes, people do not realize what a toll prolonged illness takes on a family. People tend to think 'put it behind you' , but there is no way that can happen. My advice, to what has been helpful for me, is find a good therapist. I try to go every two weeks. I feel I probably will go the rest of my life. My family even got tired of hearing me talk about my ordeal. Physicians often don't understand. Medication didn't help me. It may help others. I had a couple of therapists who I didn't like at all, move on if you get a bad feeling or you don't click. I find it helpful to do charity work. But I also had to walk away from former friends who just didn't understand my ordeal. Our lives are before the ordeal and after ordeal. You have the added sorrow of mourning the passing of friends' childrens. Please try therapy. Keep a journal. I jot down things, just for my eyes. So when I go to therapy, I have points to talk about.
How is your child now?

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@kristap31

I don't know if my story fits exactly with this post, but I have not met anyone else who can relate at least a little to what I deal with. My son was a previously healthy 6 month old baby when he went into multi-organ failure last summer. The cause remains unknown. He was at an excellent Children's Hospital and spent five weeks in the PICU (pediatric intensive care unit) then two months total in the hospital. Five weeks is a long time to live in the PICU. They called it the "fish bowl" because the walls are floor to ceiling glass and there is no privacy. Codes went off multiple times a day, and each time I wondered if someone was about to lose their child or baby as PICU staff went running (walking very fast) past our room. The flight for life helicopters landed multiple times a day on the landing pad above my son's room, bringing children in critical condition. Four of the friends we made last summer all lost their children. We spent precious time together, eating together, sharing our deepest concerns and most intense moments. My son came extremely close to death. His kidneys shut completely down, his cardiovascular system, liver, intestines, lungs…He was intubated for many weeks on CRRT (continual dialysis which is actually not even made for babies his age but saved his life). It was absolutely terrifying. I am grieving the death of my friends' children and don't know how to do that. When my son was discharged (9 surgeries, a colostomy, feeding tube and paralyzed foot later) it was surreal. No one in my small town can relate to the trauma we went through. We have been incredibly supported, but not having anyone who "gets" it has been hard. The hospital he was at does not have an online support system like this which I think would have been quite helpful. I fight fear all the time and am trying not to be paranoid for him. I think more studies are coming out which show that parents of PICU kids face traumatic stress…my son seems unscathed emotionally which is wonderful! I however am struggling!

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@kristap31 I am very glad you have found this group and thank you for sharing your story. You bring up such a powerful point. Families can suffer post-ICU difficulties – just as patients do. When this happens it is known as PICS-family (PICS-F). More about that can be found in this blog post I wrote a little while back: https://connect.mayoclinic.org/page/pics/newsfeed-post/breaking-it-down-post-intensive-care-syndrome-and-the-family/

You also bring to light something that isn't discussed as often as other topics – and that is dealing with and mourning the loss of those you become close with during the hospitalization. This may be especially true in the pediatric ICUs where lengths of stays can be very prolonged and families lean on each other heavily for support. I know that some ICUs have "reunions" where families come together once a year to reconnect – I wonder if something like that takes place at the hospital you were at? This can be very therapeutic for many people.

It is also so true that finding people who "get it" in regards to the trauma that you all experienced can be very difficult. Sites like this or even face to face support groups can be tremendously helpful. Talking through the experience, working it out with others who have been there, is incredibly important. I am not sure where you are geographically, but here is a link to hospitals around the nation and the world that host such groups in case you may be close to any: https://sccm.org/MyICUCare/THRIVE/Connect-With-Patients-and-Families

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@janegigi

I worked for PICU physicians in an administrative capacity for years, so I know a little bit of what you're going thru. I often think my work helped me later me when I became ill. Yes, people do not realize what a toll prolonged illness takes on a family. People tend to think 'put it behind you' , but there is no way that can happen. My advice, to what has been helpful for me, is find a good therapist. I try to go every two weeks. I feel I probably will go the rest of my life. My family even got tired of hearing me talk about my ordeal. Physicians often don't understand. Medication didn't help me. It may help others. I had a couple of therapists who I didn't like at all, move on if you get a bad feeling or you don't click. I find it helpful to do charity work. But I also had to walk away from former friends who just didn't understand my ordeal. Our lives are before the ordeal and after ordeal. You have the added sorrow of mourning the passing of friends' childrens. Please try therapy. Keep a journal. I jot down things, just for my eyes. So when I go to therapy, I have points to talk about.
How is your child now?

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@janegigi your statement that "Our lives are before the ordeal and after ordeal" couldn't be more true. This is something expressed by so many people who have experienced critical illness. You are also not alone in feeling isolated during your recovery where people seem to tire of discussing your experience. Your suggestion of therapy and willingness to do this for yourself is so important.

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I went in for a routine hysterectomy and woke up three months later on a ventilator after the obgyn knicked my small bowel and left me to languish in outpatient recovery for 24 hours leading to septic shock ARDS and cardiac arrests and many other traumatic events in the ICU. It has been two years and a long road to recovery. Mentally I am at my wits end. I am in Atlanta but can not find any psychiatric care that is specialized in helping me mentally recover. Emory one of the largest systems in the city has not been accepting new patients for almost one year now. I am an attorney but it is very difficult to get out of bed most days. Can anyone help me with a referral to a doctor who treats PICS? I was thinking Hopkins or Mt. Sinai. I feel like i will never enjoy my life again as an active participant.

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@ctenley thank you for sharing your story. I am sorry to know that you are going through this but am glad you have found this community of support. You will find by reading these posts that you are certainly not alone. There is a great ICU Recovery Center at Vanderbilt in Nashville that I think you might be very interested in. They have an amazing group including a psychiatrist on their team who has been a lead researcher regarding post-ICU recovery. Here is a link to their information: https://www.icudelirium.org/the-icu-recovery-center-at-vanderbilt

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Wow. That is too good to be true! So close. Thank you for sharing and yes I am happy to have found this support system as well.

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