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

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.

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?

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.

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

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.

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.

Is there info on this site about POCD, Post Operative Cognitive Decline, an issue following any major surgery but particularly prevalent for people who have had cardiac surgeries? I've found 'pumphead' sites on Facebook, dozens of research papers, but cannot locate a discussion on the topic here. Please advise.

https://www.mayoclinicproceedings.org/article/S0025-6196(11)65220-8/fulltext
Hello @quinn, I did a search and agree with you, I did not find anything on Mayo Connect. I was able to find, however, the above article from the Mayo Clinic in an online search, not through Connect. They are calling it Perioperative Cognitive Decline or Dysfunction, but even that I could not find on Connect. I will do some more poking around and see what I can find and let you know. How are you doing? Are you feeling better these days?

That is an excellent article Karukgirl! Thank you so much. Thank you for asking how I am. I am quite unwell, but more concerned than ever of having such a big surgery at my age, 71. Too much informaton is a dangerous thing and I have been scouring pub med, NIH and other research sites for septal myectomy complications. The ones that scare me the most are the Perioperative Cognitive Decline, Post Perfusion Syndrome, Post Operative Cognitive Dysfunction, Pumphead or whatever one calls it and the conduction disorders that are not uncommon after this surgery. Interestingly papers claim that even children can experience lifelong learning disabilities following cardiac surgery. So it's not just limited to seniors like me. I remain indecisive and in limbo.

@quinn, I think 71 is young! I get closer to it every day! I share your voracious research tendencies, and I too agree that sometimes you can overload your mind and end up making yourself less confident and feeling unsure and uncertain. I actually found a septal myectomy YouTube and watched the surgery. I wanted to know what was going to happen to me. It was not a mistake in my case to watch it, but I would say that sometimes we are better off not knowing every single thing. I also feared complications. They do happen. We know that. But I also feel you have to weigh the benefits along with the costs. In today's open heart surgery, complications are so very rare. There comes a point when you get to decide how you want to live your life, and for me I wanted my life back. I wanted to hike and walk and dance and just about anything without feeling like I was going to have a heart attack or be short of breath. My advice to you would be to tell yourself you have enough information about the negative things that could happen, and start reading, or re-reading on Connect the amazing results those of us who had septal myectomies have had. Maybe that will balance your thoughts and bring some peace to your racing thoughts. The longer you put off the decision for surgery, the longer HOCM has make your heart work so hard and cause more damage. Of course it is easy for me to say all this, I got my life back and feel fantastic. But I do remember very well the fear of what could go wrong. The odds are in your favor, and that's what I told myself. I was in the best place in the world, the Mayo Clinic, and I trusted God. I accepted the risk and I am so very grateful I did. I hope some of what I shared is helpful. Even having a dental procedure has risks, we can't avoid them. The process starts in your mind. I hope you can find some peace. ~ Debra