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

Hi @lynngs44 I’m sorry to hear that your new heart is failing. Facing the end must be so hard for your entire family. May I ask how old your daughters are? How are they dealing with this unfair reality?

Hello. Thank you for your kind words. Unfortunately, with the pancreas transplant failing and all of the complications, we've been down this road before but this time is very different. My heart has been perfect since the first day I received it seven years ago so I was shocked to learn it is now failing. My daughters are 22 and 26 so that additional seven years that I've had with them has been such a miracle. But yet even now, they still feel so young and still need their me in their lives. I began keeping a notebook for them, writing things down, thoughts, recipes, just everything I know they will one day wish they had. It's devastating for all of us but we just keep making the most of every day we have together.

My name is Holly and last november I suffered a severe medical event that started with a week of psychosis and delirium at home. I was taken to a&e, became extremely violent and was sedated. That sedation led to a medically induced coma that lasted 2 weeks. They did cat scans, mris, lps and nothing showed. The first week of my sedation was too light and I was in and out, kicking my legs violently in the bed. The second week they kept me under with more medication and I was pumped full of a list I have never been able to get hold of but it was extensive. They tried to wake me up several times but I became violent and they sedated me again. They managed to take the tube out once but I developed stridor and it was placed back in urgently. I went through never ending nightmares, visions, terrifying things I re live daily while under. Some of what people said to me came through but I was so confused, in the visions they were mutilating me, I was begging for death. The only thing I managed to say during sedation, I looked my mother in the eye and told her I was going to die.
Since the coma I have developed agoraphobia, my cptsd let's me relive these memories daily. I have weakness of limbs and constant stinging in several parts of my arms, as my veins collapsed they were not able to place iv lines in and they just kept trying, I was hysterical by the 20th attempt. I picked up a bug in icu and they couldn't get the antibiotics in as they only come in iv form, the last line of defense against a super bug.
When I was moved off of icu onto a ward at around 1 am they tried to refuse me entry as previously I had only been able to stand once with the occupational therapists, and the requirement for the ward was I could get myself to the toilet. I demanded a walker and I got up and walked - i will forever be proud of myself for that moment of defiance and determination. That first night in the ward i developed a fever, as the super bug was taking hold, and I was strapped down to the bed with a sheet and the light turned off when I pressed the bell and begged for help. They then forced an iv in to my arm blew a vein and pumped me full of fentantl to calm me down.
I managed to escape the hospital with the help of the perinatal mental health team the moment the infection was cleared from my system, I begged them to let me go as I have severe ptsd from hospitals from before this episode and I was terrified, I hadn't slept for more than an hour in weeks.
Im sorry for rambling. I hope someone is able to relate to this experience because I feel so alone.

Is this the same as critical care weakness? I was diagnosed with that after 2 months in ICU. I was intubated the majority of the time and then had a trachy but have no memory of any of it. I do however remember a dream that I think I had during the time. My husband has said it was an awful time. Apparently I can be a little combative

I spent 7 days in intensive care after open heart surgery for mitral valve replacement and tricuspid valve repair. My aorta was nicked during surgery and I lost a lot of blood. I remember replacement blood over the next days but my HB is still low after4 1/2 months. I gained 14.5kg of fluid, I developed pneumonia and pleural effusion and had a total heart bock. I was left with post surgical atrial fibrillation which I still have. I reacted severely to amiodorine. I stayed four weeks in hospital instead of a proposed 7 to 9 day stay. A pericardal drian after 3 1/2 weeks took 2,1 litre from one lung, 0.6 from the other. Now on digoxin after three failed cardioversions, I have had a sudden onset of wet age related macular disease diagnosed in both eyes, entailing injections into both eyes every four weeks. I don't know if digoxin triggered the wet AMD but I know it doesn't control my heart rate and keep the Afib acceptably low. So I have to back to hospital go for further cardioversion and possible ablation. I am pretty traumatised by all this and I'm losing my ability to bounce back. It feels like PTSD. Maybe there are others who have felt the same?4

@maggykriti, I'm tagging @danab and @karukgirl who have both been in ICU related to heart surgery. They know what that is like.

After having had complications and suffered trauma, I can understand that you're having a PTSD-like reaction to returning to the hospital. That can affect your ability to bounce back. ICU nurse @andreab writes about the emotional impact here:
- Breaking it Down: Post Intensive Care Syndrome and Recovery - Emotions https://connect.mayoclinic.org/blog/pics/newsfeed-post/breaking-it-down-post-intensive-care-syndrome-and-recovery-emotions/

Maggy, have you ever talked to a social worker about your fears of returning to the hospital?

Hi Coleen, Thank you for getting in touch. I haven't spoken to anyone at the hospital about my fears of returning. I am expecting another attempt at cardioversion, three fails so far, and/ or ablation back at the hospital. I've been thinking of finding a therapist to talk through my response to what went so very wrong for me so I can face it with more confidence. I worked as a clinical psychologist so I know ' physician heal thyself' isn't easy. I shall read the messages here from my fellow heart surgery and ICU patients. Thank you

Hello @maggykriti, and welcome to Mayo Clinic Connect.
Wow. What a wild ride you have been on! I think anyone would have issues or fear after all you have gone through. And you are still going through so much.

@colleenyoung gave you a wonderful place to start to try and learn that you are not alone in feeling the way you do. I think the benefit of reading about what she linked for you is that unless you have gone through something, it's really hard to know what it is like, right? That is not to say that going to a therapist is a futile idea...it's a great idea. And you should know...because you worked as a clinical phycologist. But there is comfort in being in the same company of people who have gone through the same thing. They get it.

My little PICS (Post Intensive Care Syndrome) was nothing compared to yours, but for me it was a very real and traumatic thing. I remember the night like it was yesterday still to this day, but it does not affect me like it did at first.
I tried to not remember and I think that may be the wrong approach. At least in my opinion, because facing the fear, working through it, coming to accept that we all go through bad things helped me accept it.
Again, my experience was nothing like yours, but six months later when I had a dental cleaning scheduled, I almost had a melt down in the chair. Sitting there, like a good little patient, with my mouth open and that suction tube in my mouth triggered me and I flashed back to ICU. I had to do a lot of "self talk" in my head. I prayed. I tried to focus my thoughts elsewhere. It took at least three more dental cleanings (six months apart!) to not have an accelerated heart rate and be all jumpy and flashing back to being intubated in ICU.
I had never heard of PICS until I read about here on Connect. I think nothing can prepare you for ICU, and that's how it gets its name INTENSIVE care unit...because being in there is INTENSE!

May I ask where your hospital is? Having a complication from surgery that has lead to a cascade of all these other complications may have lowered your confidence in your hospital. I know it would mine!
Perhaps seeking a second opinion elsewhere would help? Maybe that is where some of your fear is coming from. Going "back to the scene of the crime" kind of feeling. Those are only my thoughts, and I am not a clinical phycologist, I can barely spell it!

I hope you can find some peace being here on Connect and "connecting" with other people who have gone through these mentally challenging experiences. Our bodies are amazing, but our minds are so powerful too. Our thoughts can make or break us emotionally. I had to really work to change my thoughts, it did not just happen without some intention on my part.

Thank you @colleenyoung for tagging me!

Dear Debra, Thank you so much for messaging and to Coleen for the very helpful link and connecting us.
I am sure you are right that the shared experience of intensive care makes such a difference, it is so unlike anything else we go through.
I'm not surprised the suction tube at the dentist took you back there.
I cancelled my dental check up until six months after surgery, it means antibiotics and a risk of endocarditis because of my replacement valve. I need to get up strength!
I have lost some faith in my hospital. It is one of the most respected in the UK, the Royal Papworth. I have a call from my cardiac rehabilitation nurse one a month as I'm not stable for exercise yet. She is amazing and worked nights in ITU, Papworth for 15 years. The surgeons nicked my aorta during open heart surgery, causing huge blood loss which I wasn't expected to survive. My nurse says that it was an awful thing to happen but she thinks I wouldn't have survived it in any other hospital in the UK. She says they knew how to fix it. So I'm trying to trust. I will be transferred to a local hospital's care when I'm finally discharged from Papworth. My surgeon wants to try interventions to fix the atrial fibrillation I got from surgery. The local hospital seems OK and the cardiologist there seems to have the same approach as my surgeon.
I had asked my husband to record what happened to me in intensive care as I knew I would have one or two days there, I didn't expect the longer stay. My husband really didn't understand enough of what was happening and, as you know, a lot happens when you are alone with the nurses and doctors. I know some of my memories are confused. I have this picture of my sister and brother in law at the bottom of the bed when the alarms went off when my pulse dropped and my legs were stuck up in the air, underwear on view. My sister assures me she wasn't there!
Nothing prepares you for the vulnerability and total inability to help yourself. Most of the nurses were amazing. They were so professional dealing with intimate needs. My work didn't help one bit. I know I should stay calm but wow, this was something else, as you know. I do value the help I am getting here. Thank you so much