Connect
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?
Like
Helpful
HugInterested in more discussions like this? Go to the Intensive Care (ICU) Support Group.
Connect
Hi @rckj, I can imagine that you're anxious and scared about this new challenge. Thanks goodness you have an excellent team.
You might wish to talk with others in the Eye Conditions group: https://connect.mayoclinic.org/group/eye-conditions/
In particular, I think you might appreciate this discussion:
- Low Vision: Let's share about coping day to day https://connect.mayoclinic.org/discussion/low-vision-1/
There are few corneal dystrophy related discussions too.
-
Like -
Helpful -
Hug
2 Reactions@colleenyoung thank you for the links to vision related issues! As I suspected, my corneas have begun to destabilize. No surgery yet, just watchful waiting and supportive treatment. Various drops and ointments and bandage lenses. As usual, I always get the warning that this could, at some point, progress to transplant. It all just feels like too much. I will connect to the low vision and the dystrophy groups on the vision site. These support sites have been of such help to me. Thank you again. Rhoda
-
Like -
Helpful -
Hug
3 ReactionsI understand your anger. Five years later, I still have anger that the ICU staff allowed a male stranger in my ICU room while I was in a coma bc he said was a pastor. He was not. They didn't ask my family. He was an intruder. I'm terrified of hospitals now. It was against JCAHO and I filed a complaint against the hospital. JCAHO agreed with me. Worse part I used to work for that very hospital! It was a huge violation. I'll never know what he may have done. So you have every right to feel angry. I tell everyone you gave to be own doctor. And you have beware of hospitals. You are not safe.
-
Like -
Helpful -
Hug
2 Reactions@janegigi
I am so sorry that you had that experience. That is never ok. You have every single right to be angry. And I agree, we have to advocate for ourselves. Two hospitals discharged me with a perforated colon, and I was sent home with Steven Johnson’s Syndrome. It has always been my dream to be a NP, how could I go back? I had a blood clot and told them I’ll not be admitted. I avoid the hospital at all costs. My Grandma just passed I watched her take her last breath. I feel comfortable with her not being alone, but I feel triggered. It’s been a huge setback and no one in my family understands. Thank you for sharing with me.
-
Like -
Helpful -
Hug
2 ReactionsI would recommend trying to find a therapist. That has helped me the most. But if the first one you see doesn't 'click' don't hesitate to move on. The first one in I saw tried to convert me to her religion. That was a big no for and highly unethical. I could have reported her. But I just moved on instead. I did find a really good one instead. I would look for someone who treats PTSD.
-
Like -
Helpful -
Hug
2 Reactions@muriel66 Today I re read the messages you sent me almost six months ago. I feel deeply grateful for your insight, which has been so important in my own healing. I am moving forward in my life, trying to be kinder and more patient with myself through the long road of healing. I just wanted you to know that I am thinking of you and hope that you are well in your own journey of healing. From Amanda
-
Like -
Helpful -
Hug
3 ReactionsI don't know if my story fits exactly with this post, but I have not met anyone else who can relate at least a little to what I deal with. My son was a previously healthy 6 month old baby when he went into multi-organ failure last summer. The cause remains unknown. He was at an excellent Children's Hospital and spent five weeks in the PICU (pediatric intensive care unit) then two months total in the hospital. Five weeks is a long time to live in the PICU. They called it the "fish bowl" because the walls are floor to ceiling glass and there is no privacy. Codes went off multiple times a day, and each time I wondered if someone was about to lose their child or baby as PICU staff went running (walking very fast) past our room. The flight for life helicopters landed multiple times a day on the landing pad above my son's room, bringing children in critical condition. Four of the friends we made last summer all lost their children. We spent precious time together, eating together, sharing our deepest concerns and most intense moments. My son came extremely close to death. His kidneys shut completely down, his cardiovascular system, liver, intestines, lungs...He was intubated for many weeks on CRRT (continual dialysis which is actually not even made for babies his age but saved his life). It was absolutely terrifying. I am grieving the death of my friends' children and don't know how to do that. When my son was discharged (9 surgeries, a colostomy, feeding tube and paralyzed foot later) it was surreal. No one in my small town can relate to the trauma we went through. We have been incredibly supported, but not having anyone who "gets" it has been hard. The hospital he was at does not have an online support system like this which I think would have been quite helpful. I fight fear all the time and am trying not to be paranoid for him. I think more studies are coming out which show that parents of PICU kids face traumatic stress...my son seems unscathed emotionally which is wonderful! I however am struggling!
-
Like -
Helpful -
Hug
1 ReactionI worked for PICU physicians in an administrative capacity for years, so I know a little bit of what you're going thru. I often think my work helped me later me when I became ill. Yes, people do not realize what a toll prolonged illness takes on a family. People tend to think 'put it behind you' , but there is no way that can happen. My advice, to what has been helpful for me, is find a good therapist. I try to go every two weeks. I feel I probably will go the rest of my life. My family even got tired of hearing me talk about my ordeal. Physicians often don't understand. Medication didn't help me. It may help others. I had a couple of therapists who I didn't like at all, move on if you get a bad feeling or you don't click. I find it helpful to do charity work. But I also had to walk away from former friends who just didn't understand my ordeal. Our lives are before the ordeal and after ordeal. You have the added sorrow of mourning the passing of friends' childrens. Please try therapy. Keep a journal. I jot down things, just for my eyes. So when I go to therapy, I have points to talk about.
How is your child now?
-
Like -
Helpful -
Hug
5 Reactions@kristap31 I am very glad you have found this group and thank you for sharing your story. You bring up such a powerful point. Families can suffer post-ICU difficulties - just as patients do. When this happens it is known as PICS-family (PICS-F). More about that can be found in this blog post I wrote a little while back: https://connect.mayoclinic.org/page/pics/newsfeed-post/breaking-it-down-post-intensive-care-syndrome-and-the-family/
You also bring to light something that isn't discussed as often as other topics - and that is dealing with and mourning the loss of those you become close with during the hospitalization. This may be especially true in the pediatric ICUs where lengths of stays can be very prolonged and families lean on each other heavily for support. I know that some ICUs have "reunions" where families come together once a year to reconnect - I wonder if something like that takes place at the hospital you were at? This can be very therapeutic for many people.
It is also so true that finding people who "get it" in regards to the trauma that you all experienced can be very difficult. Sites like this or even face to face support groups can be tremendously helpful. Talking through the experience, working it out with others who have been there, is incredibly important. I am not sure where you are geographically, but here is a link to hospitals around the nation and the world that host such groups in case you may be close to any: https://sccm.org/MyICUCare/THRIVE/Connect-With-Patients-and-Families
-
Like -
Helpful -
Hug
3 Reactions@janegigi your statement that "Our lives are before the ordeal and after ordeal" couldn't be more true. This is something expressed by so many people who have experienced critical illness. You are also not alone in feeling isolated during your recovery where people seem to tire of discussing your experience. Your suggestion of therapy and willingness to do this for yourself is so important.
-
Like -
Helpful -
Hug
2 Reactions