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?

Interested in more discussions like this? Go to the Intensive Care (ICU) Support Group.

Bill here. 8 years post SLK transplant, with a long ICU stay and even longer rehab stay. I couldn’t walk, and using my hands was difficult, neuropathies in my feet, had to get swallowing lessons, delirium, etc. I had no memory of being admitted to the hospital, the ICU stay, or a week or so after the surgery. I learned to move about using a wheelchair and slideboard, and struggled with pain, neuropathies, insomnia, etc. Some meds helped, but I was on so many… anyhow, I’ve made peace with my amnesia since I partially reconstructed the months I lost from notes and witness accounts.
I serendipitously read about post-ICU syndrome, and realized that had been part of the problem in my recovery. Nobody had mentioned it as a possibility. I read that in Europe they keep a diary by your bed and any time someone did something to you, for you, with you, they wrote in the diary. Then, upon discharge, they give you the diary so that, along with the official records and witness accounts, you have a day-to-day account of what occurred. I wish I’d had that.
Enough for now. I should say that my experience was not typical of post transplant patients. I was just unlucky enough to be moribund on admission and then had all of the complications in the book. Without Mayo Clinic, I might not be writing this today. So I’m grateful; I just wish that post-critical illness syndromes were more recognized, along with physical healing. Perhaps they are now.
It’s been two years since I was hospitalized for anything. I still have to be careful: the COVID19 pandemic has been rough.
Hopefully this little story helps someone out there in the ether. Gottenyu.

REPLY
@emil

Bill here. 8 years post SLK transplant, with a long ICU stay and even longer rehab stay. I couldn’t walk, and using my hands was difficult, neuropathies in my feet, had to get swallowing lessons, delirium, etc. I had no memory of being admitted to the hospital, the ICU stay, or a week or so after the surgery. I learned to move about using a wheelchair and slideboard, and struggled with pain, neuropathies, insomnia, etc. Some meds helped, but I was on so many… anyhow, I’ve made peace with my amnesia since I partially reconstructed the months I lost from notes and witness accounts.
I serendipitously read about post-ICU syndrome, and realized that had been part of the problem in my recovery. Nobody had mentioned it as a possibility. I read that in Europe they keep a diary by your bed and any time someone did something to you, for you, with you, they wrote in the diary. Then, upon discharge, they give you the diary so that, along with the official records and witness accounts, you have a day-to-day account of what occurred. I wish I’d had that.
Enough for now. I should say that my experience was not typical of post transplant patients. I was just unlucky enough to be moribund on admission and then had all of the complications in the book. Without Mayo Clinic, I might not be writing this today. So I’m grateful; I just wish that post-critical illness syndromes were more recognized, along with physical healing. Perhaps they are now.
It’s been two years since I was hospitalized for anything. I still have to be careful: the COVID19 pandemic has been rough.
Hopefully this little story helps someone out there in the ether. Gottenyu.

Jump to this post

Thank you @emil. I think your story is helpful to many, and most pointed to @ds1958 who just joined Mayo Clinic Connect.

@ds1958, how are you doing today?

REPLY

I was hospitalized almost 3 years ago with heart and liver failure. I was in a coma for 3 weeks and slowly became conscious with delirium. I had a very negative experience in the hospital because I was misdiagnosed following a false drug test that indicated positive for narcotics. I have never been an illegal drug user and later on it was determined that the false positive was because I had been on a blood sugar lowering medication that can return false methamphetamine test results. I was misdiagnosed with liver failure from a drug overdose based on the faulty test when what I was really suffering from was heart failure from a virus that subsequently caused liver failure. When I woke up delirious the medical staff wouldn’t listen to anything I said because of the drug test. I developed a terrible infection in my foot that caused me more pain than I have ever felt. I cried and screamed for hours and was told to shut up. Only after my husband helped me check out early was I able to find a doctor who diagnosed the infection and started treatment. I almost lost part of my foot because of the wrong diagnoses. Even though all of this happened 3 years ago I am still suffering, partly because I already suffered from chronic PTSD from childhood abuse and from Bipolar disorder. Many other indignities happened to me in the hospital and I can’t seem to shake the trauma from the experience. I am on medication and in therapy but I feel like no one really understands the ICU trauma I still suffer from. I’m looking for a support group where I can talk to others who have gone through this.

REPLY
@seanne

I cannot tell you how happy I am to discover this online support group. It's been 5 months since I was intubated, in a coma, in the ICU. The cause: a series of seizures that were completely unexpected and put me on the brink of multi-organ failure. I very nearly died. Now I've learned that it's true that you enter the ICU as one person and leave as someone different. I know I can never get my old life back…for one thing, repeat seizures could kill me (the preferred outcome) or leave me severely brain damaged (the not preferred outcome) and that could happen at any time despite the heavy medication I now take. I find that terrifying.
Alas no one at my hospital (a large medical center in the Northwest) mentioned post ICU syndrome or told me and my family what I might experience once home. So I naively thought I'd bounce back in a couple of weeks. I had no idea how long-lasting my physical weakness would be, nor how exhausted I'd be, nor how much continuing pain I'd experience from a broken back caused by my seizures and undiagnosed for two weeks. Then there's the mental aspect — the brain fog, forgetfulness, confusion. I've self-diagnosed myself with a brain injury. How significant or long-lasting it is I don't know.
However I do feel like I'm improving thanks to time and the Internet. There are no Post ICU support groups where I live and no therapists I can use (under my health plan) who have experience counseling PICU survivors. So I'm working to piece together my own recovery by finding information and help online. It's been a hit or miss process.

Jump to this post

I’ve had seizures too and nearly lost my life in the ICU. We’ll get through this.

REPLY

Hi,
My name is Michelle Maguire. 30 months ago, in May/June 2020 my 20-year-old son had a Clonic Tonic seizure. He was surrounded by a lot of angels and survived an 11-day ICU stay where he was ventilated two separate times and had respiratory and kidney failure. There were Covid protocols at the hospital and he was there without family by his side. My husband and I actually picked him up at the curb.
It has been a long road. There were hallucinations, nightmares, and a lot of sleepless nights. He is finally physically back to pre-ICU stay. I understand the conversations about "bouncing back". I can't tell you how many times I thought he would "just bounce back" to being the college student he was before the ICU stay.
He is now 23 and has battled substance abuse of nicotine, alcohol, and THC. He is on anti-seizure medication.
Guidance through medical insurance has been frustrating and not helpful. He is now seeing a therapist that we pay for out of pocket.
I am grateful for this conversation because I understand. I wanted to share that we have practiced mindfulness, meditation, yoga, qigong, and sound meditation and it has been very helpful in the healing process for my son and myself, his brothers, and my husband. It has provided us the opportunity to be grateful and continue life in more presence.
Most days I must choose to be happy with the way things are. I choose to know he is safe. I choose to wish him happiness. I choose to be happy. I choose to know that everything is exactly as it should be.
This is not easy but when I choose this I feel better.
He continues to make progress. He is the closing manager at our local grocery store. He recently had to change from full-time to part-time. This has helped him have more balance in taking care of himself. I was nervous at first that going from full-time to part-time would not be good but it has been good.
Thank you.

REPLY

While in the trauma unit at the hospital I suffered a cardiac arrest and gave me cpr for a minute before I came to. I was rushed to icu where I stayed for 4 days. I live by myself and I’m a basket case. I cry all the time and I hate the dark, as I become very anxious. My best friend comes almost every day, but I feel bad because I cry so much. I haven’t been out since I got home 2 weeks ago. I’m trying to find a therapist through my work, but it’s taking forever. Has anybody felt this way.

REPLY
Please sign in or register to post a reply.