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

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

Hello!
My journey to find you started with a massive saddle PE, DVTs, emergency open heart surgery, life flight to an ecmo machine, 2 months ICU/CCU, countless surgeries, dialysis, medical coma, transfusions, drainage tubes, lines, respiratory therapists who beat me with a jack hammer. I am a year and a half out. Very happy to be alive. It was frightening. PICS is real. It’s terrifying. I have a zoom support group through Vanderbilt but am always always always wanting more friends who have been through it, more information about it, and more ways I can learn to give back to help others who suffer from it. A big shout out to the medical community who saved me.

A big WELCOME @mattiew! Welcome to Mayo Connect. I'm so happy you are here...it sounds like you almost were not here at all. How wonderful you are and what a blessing you have a second chance. I did not have the same life threatening conditions you had. Wow. That's incredible. I am glad you are here to share with others your experience. I was in ICU after open heart surgery and I agree with you. They don't call it "intensive" for nothing. I was not prepared to have terrible memories of being in ICU, but I sure did. I was able to work through them, but it took me months to even let myself think about it. And I was only there one day! I can't imagine 2 months! You are a super star! And you give the glory to the amazing medical team. They are amazing. Hopefully others who experienced your long journey in ICU will pop in here and say hi too. What have you found to be the biggest help accepting PICS happened to you? Do you have some thoughts you can share with others who may be going through the same thing?