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

Hello, I happened to come by this group researching PTSD post ICU. I’ve had two ICU stays, the first of which encouraged me to get a job in the ICU as a CNA and eventually be an ICU nurse. I have lots of experience working with ICU patients. I’ve wanted to be a nurse since getting my nursing assistant certification in 2005. After my last ICU stay I no longer have any desire to enter a hospital. I’ve been diagnosed with PTSD, Major Depression, Anxiety, Panic Attacks, and Agoraphobia. This is devastating to say the least. I have worked in a state psychiatric facility, I have a position at the hospital currently which I am on leave from as a float pool CNA. I am six months from hospital discharge. I see a psychiatrist, therapist, and my normal doctor. I feel stagnant. I was on short term disability my last check was in December. I have been denied long term disability, I’ve hired an attorney to contest. All of my providers agree that I can’t go onto my position at this time. I am on four daily medications. My first ICU stay was a partial colectomy with a colostomy. I was there for 12 days and at 29 years old handled it like a champ. I have the reversal surgery a few months later and coped fairly well. This last ICU stay was due to a medication to stabilize my mood swings called Lactimal. I had a severe allergic reaction to this medication and went to the clinic and was told by the PA to keep taking the medication because I had an influenza like illness with a rash unspecified. Well with fevers of 103 for two more days I decided it was time for a second opinion. I went to the ED and was transferred via ambulance to a level 2 trauma hospital where they called a rapid response code, which is all too familiar for me and I don’t remember much more. I had a bone marrow biopsy, blood transfusion, and all sorts of tests. Looking back I should’ve advocated for myself more. I’m angry that I am not normal anymore. My family is suffering, I’m 35 and supposed to have applied to the RN program. Instead I keep replaying every minute of that second hospitalization in my brain. I have dreams, and nightmares. I feel like a failure. I don’t like to leave the house and I don’t know what I’m going to do with the rest of my life or when I will start feeling better. I should note that my hematologist’s diagnosis was SIRS. Thanks for listening.

Does anyone still follow this thread? I’m 38 and just spent two months in the ICU, partly in a medically induced coma due to ARDS and sepsis, then was hooked to a ventilator and paralyzed with critical care myopathy. Wound up being diagnosed with an autoimmune disease after all was said and done, but the damage to my lungs, and muscle tissue is extensive. Not to mention the nightmares. I would love to find somewhere to talk to people who understand what I’m going through.

I had ARDS, a trache for about six weeks, pulmonary embolism, 4 week coma, kidney failure & dialysis, paralysis, plus other complications. I had to relearn to walk, relearn to use my hands, relearn to swallow. The nightmares are the worse though. I'm five years out now and still going to therapy. I would recommend stay in therapy. I write about my experience and hope to speak to others about it one day. I have good days and bad days. Some medical professional were kind and some were not. There is a Facebook page called Post Intensive Care Syndrome Group you may want to join too. I find the people on there to be very helpful. They have had been kind to me.

@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/

@jslate, Welcome. I am happy that you have joined this discussion. I don't share your experience, but I did have a brief time in ICU that left me feeling very vulnerable and confused. I know that others will be coming forward to share with you.
@jslate, I am thankful that you have been able to move forward after your experience. I commend you for using your pown experience to help others.
Here is another resource that I want to share. It is part of Mayo Clinic Connect and as members you are invited to participate in any of the conversations. I hope it is helpful.
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Post Intensive Care Syndrome (PICS) - Muscle weakness, memory problems, depression, insomnia, physical pain, nightmares. These are just a few examples of the problems that patients may experience following critical illness. Symptoms such as these which affect emotional, physical, and cognitive health are now being recognized as Post Intensive Care Syndrome, or PICS. Efforts to educate health care providers, patients, and families about Post Intensive Care Syndrome are underway. Explore our site to learn more about PICS.
https://connect.mayoclinic.org/page/pics/

@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.

@rckj, I send prayers for you. And especially for your medical team.
Hugs.

@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.

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.

@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