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

@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

@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.

I went in for a routine hysterectomy and woke up three months later on a ventilator after the obgyn knicked my small bowel and left me to languish in outpatient recovery for 24 hours leading to septic shock ARDS and cardiac arrests and many other traumatic events in the ICU. It has been two years and a long road to recovery. Mentally I am at my wits end. I am in Atlanta but can not find any psychiatric care that is specialized in helping me mentally recover. Emory one of the largest systems in the city has not been accepting new patients for almost one year now. I am an attorney but it is very difficult to get out of bed most days. Can anyone help me with a referral to a doctor who treats PICS? I was thinking Hopkins or Mt. Sinai. I feel like i will never enjoy my life again as an active participant.

@ctenley thank you for sharing your story. I am sorry to know that you are going through this but am glad you have found this community of support. You will find by reading these posts that you are certainly not alone. There is a great ICU Recovery Center at Vanderbilt in Nashville that I think you might be very interested in. They have an amazing group including a psychiatrist on their team who has been a lead researcher regarding post-ICU recovery. Here is a link to their information: https://www.icudelirium.org/the-icu-recovery-center-at-vanderbilt

Wow. That is too good to be true! So close. Thank you for sharing and yes I am happy to have found this support system as well.

Thank you for responding! I will read the blog post you wrote. We live in a mountain town which is four hours from the nearest hospital that offers the post ICU support. However, my son's PICU is hosting a retreat for the staff and are inviting PICU families to participate and share their stories. They invited us to come and share a video of our experience! That will be very helpful for us in processing, sharing, and also hopefully connecting with some other PICU families. (Maybe not the same families we became close with during his PICU stay but it will still be nice to connect with people who "get it."

The hard things I am dealing with are multi-layered. I talked about our son's 2 month hospital stay, but a year prior we lost a baby boy to stillbirth at 35 weeks from unknown cause. Then after a healthy delivery for our second son, one week later I experienced a massive postpartum hemorrhage and almost lost my life. I was on the verge of DIC and they had to perform an emergency hysterectomy to save my life. That was incredibly traumatic. We wanted more children, and to wake up from surgery without a womb has been devastating. So I was also in our rural hospital's version of an ICU and left without the ability to have another baby. There is no support for that ICU stay for me or the loss of my womb. I even went to a large Denver hospital seeking support for emergency hysterectomy and there is nothing offered. That has also been a lonely and difficult journey.

So we are simultaneously dealing with grief from the death of our first son, grief over the hysterectomy, and the trauma and ongoing medical issues with our toddler. Before all of this, we were a healthy and active family with no history of any medical conditions. It is all shocking and difficult! Living in a small town (the we are well supported by loving family and friends) has been challenging because there are few support groups or licensed trauma counselors, etc. Thank you for offering a space to discuss these things! My toddler is coming to Mayo Clinic next month to be evaluated there. We are grateful to now be a part of this neat community.

I just read your blog post and thought those words were excellent! I was wondering if there is any written booklet or handbook for PICU families that could be given during long stays? EVERY point/piece of advice that you mentioned my husband and I learned just by going through it. My son's hospital did have excellent social workers and nurses who verbalized many of the points you wrote about, but it would be even more helpful to in addition have a hard copy to remind PICU families to care for themselves and recognize the stresses of being so involved in your loved one's care. It would also be helpful to know what to expect as far as the emotional and physical strain on family members. We were in the PICU five weeks, so it was a long time to be in that environment.

I would contact the PICU you were in. I have been retired for a while, so I don't know if the PICU I work at had such a program. I know the adult ICU at the same hospital has no aftercare program. It's a real shame that no all hospitals recognize the stress involved an ICU stay no matter the age of the patient. I have tried and tried to the hospital officials where I once worked about an aftercare only to be shot down and told I didn't know what I was talking about. It's so frustrating. I go to personal therapy - one on one. That helps. But I know the same mistakes with patients must be still happening with patients every day.

My son was in a PICU for five weeks last summer. Though most of my attention was on him, I often thought of how hard it would be to be a PICU nurse. I really admired them and they were my support and strength through some of the most terrifying moments. Thank you for all you do! The PICU we were in invited us to a PICU retreat to share and encourage the staff. I think it is great that more awareness is developing as to the emotional impact of ICU stays on families, patients and staff.

The PICU invited our family to a PICU retreat where we can share our perspective and be with some of the providers who were caring for our baby. I think that will be a good step in helping to process some things. Thank you for your efforts in trying to establish an aftercare program at the hospital you used to work at. The support DURING our stay was incredible, and we continued to have some contact with individuals. However, I think a formal support and at least opportunity to talk to a social worker about grief, trauma, death of other kids...would be invaluable. Hopefully awareness is being raised and change can happen. I had no idea that others dealt with these issues until I found this Mayo Clinic group! I thought I was crazy and the only one struggling! The weird thing is no one even asks how that PICU stay and my baby's near death affected me. I guess people just don't think about it.