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

@jheitmann, Thank you for reaching out and offering to share and support others who might be experiencing similar dreams and questions after their own critical illnesses.
Here a link to Connect Pages where the staff provides a newsfeed and resources for Post Intensive Care Syndrome (PICS) https://connect.mayoclinic.org/page/pics/

Jon, It is unfortunate that your family could not be with you. They endured a traumatic event, too. How are they getting along?

Thank you for reaching out. My family is ok. I can see it was a very difficult time for my wife. She talks about it often.

Not sure where to start. I had been in the hospital for 3 day after being diagnosed with pneumonia. I had been running a fever of 103 and started being sick go my stomach. I went to ICU and within minutes was told I'd intubated to make me more comfortable.

I woke up approx. 2 weeks later to find myself tied down and wearing a BiPap. I had been STAT flighted, they lost me on the way but brought me back just as we arrived but I flatlined again, they didnt think they were going to bring me back that time, nor the next. During those 2 weeks I had been Heavily sedated, had a blood transfusion, feeding tube put directly into my stomach, I was diabetic and my kidneys had stopped functioning. Diagnosis: ARDS. I fought the BiPap for 2 days before they put in a trech and for the next 12 days it kept me breathing while I was heavily sedated, only awake for approx 1hr a day If I had visitors. I experienced Terrifying Hallucinations up until a day or so before I was put in rehab (Well over 3 weeks) I had to relearn to write, walk, then to swallow and talk. Thankfully once I came off the ventilator I was no longer diabetic and kidney function returned.

I was let go from rehab Way too early (about 17 days) but I was overwhelmed with anxiety and my (now) ex-husband had only come to see me once with my 3 children. Mentally I couldnt stay I Needed my family so they released me once I proved I could walk up 2 steps without falling. Before I left I had so many nurses and even a Dr. come and tell me how they never thought they would see me alive again and what a miracle I was.. Seven weeks later my ex took my kids and left me with a friend. (That is a very simplified story of that time)

It's been 9yrs and I'm still suffering. I have PTSD, Anxiety, Depression, Minor Agoraphobia (all self diagnosed) and more physical issues than I even know about no doubt. I didnt recieved proper care in Any way after I was released. (That was my ex's fault) My body and mind seem to be continuing to break down. I lost my children, my Pride, and at one point my will to live. I used to be very intelligent, went back to college at 29 graduated 5yrs later after having my 3rd child with an Associates Degree in Science and Accounting Technology and a 4.0 GPA. I Loved to learn! My saying used to be: If you're not learning you're not living! Now I simply cant concentrate and feel I've forgotten the majority of what I learned in college. My memory was Terribly affected, so much of my children's lives I simply dont remember, but I can now seem to remember my own in ways I wish I could forget again.

I Just found out about PICS, it's a relief to know there is a name for it and that I am not Alone. However, thanks to this pandemic I am unemployed, been without insurance for approx 4yrs and I dont know what to do. Is there an end to this?? Thank you for reading my story.

Hi @afinegirl573 and welcome to Mayo Clinic Connect. I think many people who have been in ICU and have experienced after effects are relieved, like you to learn about post intensive care syndrome. Were you told about PICS from a provider or did you discover it here?

You may be interested in reading more about PICS in @andreab's blog series "Breaking it Down" in the PICS blog https://connect.mayoclinic.org/page/pics/

Afinegirl, are you in counselling? Do you have professional guidance to deal with the PTSD, anxiety and depression?

@colleenyoung @rosemarya
It’s been a long time since I’ve posted but I’m hoping some of the group may remember me. This is Rhoda. I have had multiple ICU stays with Addisons Disease and Addison Crisis and sometimes sepsis. I take hydrocortisone for the Addison’s and was weak but more stable for awhile. Three weeks ago I was diagnosed with type two diabetes, insulin dependent and have had one ICU stay and two other hospitalizations for a combination of low blood sugar and addisonian crisis. I’m overwhelmed and scared. I have a terrific endocrinologist at Mayo but live on the East coast. Despite fairly good local hospitals, Endocrinology for Addisons and its interaction with diabetes doesn’t seem great. I read on the NIH website about the interaction and their articles say that I will have more lows and be less likely to recognize them, due to the lack of cortisol as a supportive and warning system. I am blood testing 5 times a day.
I am afraid to sleep due to fears of a low in sleep that wouldn’t wake me. In fact, the ICU visit was precipitated by my husband being unable to wake me. Also seems like increased Addisonian crisis episodes. PCP here thinks body is not yet used to lower blood sugars. My initial values for diabetes were terrible, fasting blood sugar at 496, A1C 11.8. Data indicates I have only been diabetic for two months, it’s now three weeks from the diagnosis. PCP bringing down blood sugar slowly to avoid shock. I am a very compliant patient, doing everything that is being asked. I have signed up for diabetes site here but haven’t seen anything yet for new diabetics or comorbid conditions. Any thoughts would be appreciated. Hope all is as well as as can be expected for all in the group and elsewhere. Thank you, Rhoda.

@rckj, so good to hear from you. I can imagine that you would fear going to sleep. But we need to sleep. Here are a few related discussion in the Diabetes group. Perhaps there exists one that you may wish to take part in.
- Secondary adrenal insufficiency https://connect.mayoclinic.org/discussion/secondary-adrenal-insufficiency-1/
- Possible Adrenal Issues https://connect.mayoclinic.org/discussion/possible-adrenal-issues/
- Trouble with everyday realities of diabetes https://connect.mayoclinic.org/discussion/trouble-with-everyday-realities-of-diabetes/
- What to eat when you have diabetes, heart and kidney issues? https://connect.mayoclinic.org/discussion/what-to-eat-when-you-have-diabetes-heart-and-kidney-issues/

If none of these addresses the things you would like to discussion, I encourage you to start a new discussion in the Diabetes/Endocrine System group https://connect.mayoclinic.org/group/diabetes-and-endocrine-problems/

Hello, My name is Andy. I am an occupational therapist and clinical solution manager for a company that makes devices to return mobility back to patients in the ICU as early as possible, while keeping both patient and staff safe. I have met a few people currently effected or have been effected by Post Intensive Care Syndrome. I truly believe we can have a positive impact on those experiencing problems associated with immobility in the ICU. I am very interested in learning more about people's struggles, what has worked to assist and even more important what can be done to build our ability to return ICU survivors/thrivers back to their previous lives.

Hi. I'm Jason, and I believe i have PICS from an extensive ICU stay in 2019. I had my second neck fusion surgery on September 19,2019 and then didn't wake up until November 4, 2019. I had been on a ventilator for 7 weeks, on ECMO (VV) for 23 days and in a coma / sedated for 6 weeks. I had 2 bouts of cardiac arrest that both required CPR to revive me each time, vent acquired pneumonia, ARDS, 2 plural effusion clots in my lungs, and 2 deep vein thrombosis (arm & leg). I had a tracheostomy in October 2019.
Immediately following the cervical fusion surgery when the breathing tube was removed, my trachea collapsed from tracheomalacia (floppy trachea that can and did collapse), which had been undiagnosed.
I woke up on November 4th and was transferred to a long term acute care center on November 8th. While there, I had to learn to walk again and was also weaned off of the vent. I was only there for 2 weeks before I was walking and able to dress and care for myself enough to go home. While there, I was convinced that I was going to die, and I worked extra hard to get out and go home. Due to having tracheomalacia, the trach was left in place and really no after care was given other than ordering supplies to care for the trach.
After going home, I got pneumonia approximately 11 more times and was hospitalized each time and was inpatient for at least 7 days each of the stays. In November 2020, I finally had the surgery to repair my trachea and bronchial tubes. I was in an ICU for 5 days following this surgery and again on a vent. A week later, I was admitted back into the hospital for a pneumothorax and pneumonia again. Finally on November 4th, 2021, I had the trach removed and have been doing fine without it since. I am currently recovering from covid at home and have not required any medical intervention. My wife happens to be an ER nurse (RN) and has done a phenomenal job of taking care of me throughout the entire ordeal.
Prior to any of this I was a police officer for 13 years but had to quit due to PTSD in 2014. Having previously been diagnosed with ptsd, I was quick to realize that I was suffering from it in relation to my medical issues and from delusions/hallucinations that I experienced while I was sedated. I've felt as if something was wrong with me but it wasn't until recently that I learned of PICS This was quite a relief to know that I was not alone or just an oddball having all of these symptoms (depression, anxiety, lethargy, nightmares, lack of motivation, insomnia and also excessive sleeping, lack of concentration, and just overwhelmed).
So, it has now been over 2 years and I'm still experiencing these things and seem to be getting no better. I also have extreme and constant pain from neuropathy caused by the ECMO cannulas. I was referred to a pain Dr and put on opiods which I take daily and get little relief. I receive disability and am physically and emotionally not able to work. My daily life consists of getting out of the bed around noon-2pm and getting on the sofa where I watch TV and usually fall back to sleep. I rarely drive or go anywhere unless my wife drives us, and we usually only go out to dinner or to Walmart. I used Walmart prior to covid as a warm place to walk around to try to build up my pulmonary capacity. Having the trach prevented me from ever being able to do so. Now that I no longer have the trach, I am able to walk without getting so easily winded though.
My primary care dr is a VA Dr and has no clue about PICS so I don't know where to turn for help. I live in the western metro Atlanta area. I've heard that Vanderbilt has a PICS unit but traveling there for regular visits wouldn't be realistic.
Anyhow, that's who I am and most of what I've been through.
Of course, I didn't mention all of the battles that we have had to have with our insurance company, Dr's that treated me in the ER that were unfamiliar with my case and unwilling to research it to properly treat me (leading to many of my pneumonia cases), having to go to 2 different hospitals (Emory & Cancer Treatment Centers of America) for specialists to treat the tracheomalacia and trying to get the trach taken out.
Lastly, my biggest post icu stay battle was the trach and getting it out. My original pulmonary Dr told me that i would have it for the rest of my life and I was not willing to accept this so I requested to see one of his partners for treatment. 2 months after consulting with the new dr, i was trach free. I really thought that once this battle was over, my mental state would improve, but it has by no means improved. I still have limitations due to the nerve pain along with the mental health issues.
I know this is a very long introduction and apologize for being so lengthy but wanted to try to best explain in full what all i have and am going through.

Welcome @luttrj. You sure have been through a lot. While you said your post is long, I bet you let out many details. First, I'm glad you found this group. I'd like to introduce you to a few members and show you around.

Because you mention ARDS, I'd like to introduce you to @plexiclone @jready @donna562 @giffordtheresarev @lsljlllove3711 @susanop. Feel free to pop over to join them in this discussion:
- ARDS Support: my story and looking to help other survivors https://connect.mayoclinic.org/discussion/ards-support-my-story-and-looking-to-help-other-survivors/

@cindyvag @smoky @jslate @usmccam @amandacgrow @seanne and @melthomas have also talked about the struggles of coming of ventilation and can relate.
After ICU and ventilation https://connect.mayoclinic.org/discussion/after-icu-and-ventilation/

Lutt, thank goodness that you recognized the symptoms of PTSD and sought more information to find out that PICS is a real thing and that the mental issues deserve attention as much as the physical. What mental challenges are you struggling with today?

Thank you very much for your reply