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?

@andreab

@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

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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.

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@andreab

@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

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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.

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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.

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@milindohope83

Oh yes, especially if you care for them for weeks or more and it is determined that the condition that they are suffering with is never going to get better and there is little to be done except offer comfort to the patient and family. It helps them all to see familiar faces caring for them. It helps to know that you are not just a patient in a room who may never go home again from the hospital. It can be a tough job alot of the time, not just the medical care, but the emotional support. But it is the most important thing of all to offer in that that loving one on one care for all who are suffering in such a way.

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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.

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@janegigi

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.

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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.

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@janegigi

I 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?

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Thank you so much for your kind response. I'm sorry it has taken so long to respond. I would love to find a good therapist, but live in a small rural town. We travel often to Denver for medical appointments, but at this point my son's needs are priority. If I just knew of a great therapist I would travel to go! I'm just afraid it is going to take awhile to find one. Journaling does help. I should do that more often. I think just getting my thoughts out on paper is good to see what I'm dealing with.

It's so true that life is before and after. I felt like that after my first son was stillborn. After Owen's PICU stay, it is even more so. A lot of my friends have not been through these situations so it has felt quite lonely. They just don't get it, don't ask and so I don't get the chance to talk through things. It's almost not worth the effort to keep up some friendships. Hope that doesn't sound selfish.

We participated in the Courage Classic fundraiser for Children's Hospital last weekend. That was a healing event, giving back to the hospital and being able to look back over the past year and see how far we have come. Our son (19 months) rode with us, and it was a huge mental victory to be able to do it with him. It made me feel not so alone as many other families and kids with medical challenges participated.

Owen is doing remarkably well now, considering everything his little body has been through. He went into multi-organ failure last summer and the cause is still unknown. The fear of that is with me all the time. During that PICU stay he had nine surgeries and was seen by many specialists. After discharge two months later, he came home with a colostomy, feeding tube, tons of follow up viists, and a paralyzed foot and severe peroneal nerve damage supposedly from a bloodclot and organ failure. Over the past year, we all worked incredibly hard and he no longer has a colostomy, feeding tube or any meds. The main issue now is his leg injury which is why he is going to Mayo Clinic next month. He is happy, bright, determined and a complete joy. It has been a journey.

I did want to ask you, do you ever feel fear from your ICU stay? I fight fear all the time after the traumatic things our family has endured. I have to try really hard not to be paranoid about everything my kids do. The unknown cause of Owen's illness contributes hugely to that fear. I am unsure how to deal with it!

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@kristap31

Thank you so much for your kind response. I'm sorry it has taken so long to respond. I would love to find a good therapist, but live in a small rural town. We travel often to Denver for medical appointments, but at this point my son's needs are priority. If I just knew of a great therapist I would travel to go! I'm just afraid it is going to take awhile to find one. Journaling does help. I should do that more often. I think just getting my thoughts out on paper is good to see what I'm dealing with.

It's so true that life is before and after. I felt like that after my first son was stillborn. After Owen's PICU stay, it is even more so. A lot of my friends have not been through these situations so it has felt quite lonely. They just don't get it, don't ask and so I don't get the chance to talk through things. It's almost not worth the effort to keep up some friendships. Hope that doesn't sound selfish.

We participated in the Courage Classic fundraiser for Children's Hospital last weekend. That was a healing event, giving back to the hospital and being able to look back over the past year and see how far we have come. Our son (19 months) rode with us, and it was a huge mental victory to be able to do it with him. It made me feel not so alone as many other families and kids with medical challenges participated.

Owen is doing remarkably well now, considering everything his little body has been through. He went into multi-organ failure last summer and the cause is still unknown. The fear of that is with me all the time. During that PICU stay he had nine surgeries and was seen by many specialists. After discharge two months later, he came home with a colostomy, feeding tube, tons of follow up viists, and a paralyzed foot and severe peroneal nerve damage supposedly from a bloodclot and organ failure. Over the past year, we all worked incredibly hard and he no longer has a colostomy, feeding tube or any meds. The main issue now is his leg injury which is why he is going to Mayo Clinic next month. He is happy, bright, determined and a complete joy. It has been a journey.

I did want to ask you, do you ever feel fear from your ICU stay? I fight fear all the time after the traumatic things our family has endured. I have to try really hard not to be paranoid about everything my kids do. The unknown cause of Owen's illness contributes hugely to that fear. I am unsure how to deal with it!

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You don't sound selfish at all. I have 3 children and now 6 grandchildren, so I know they come first. I was 62 when I got ill. But your life does change completely. I had to step away from previous friendships bc they thought I could step back into my previous life, not understanding barely walk. I had been a long time Girl Scout volunteer. Some of the people even ( I'll never know who) even tried to get me removed from my volunteer position. That was painful. I can only guess bc I wasn't at their beck and call like I had been before. A Board member stepped forward and vouched for me and the CEO actually apoligized to me. I changed the area where I volunteer. I'll be helping my daughter with my granddaughter's troop, and I still help with fund raising. But it does feel good to give back in the fund raising department. I just have to pace myself.

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@kristap31

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.

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@kristap31 thank you so much for sharing your family's story with all of us. I can connect with you from a parent/patient perspective when you say "no one even asks how that PICU stay and my baby's near death affected me". When my son nearly arrested in the ED and ended up in the ICU for 4 days a year and a half ago it all seemed so surreal. But when we left the hospital, we did not have any follow up appointment scheduled for over a month! I was shocked. Coincidentally I had an appointment for myself with our Family Med MD 5 days later. We spent my whole appointment talking about my son's event and we cried and cried and cried together. It was a huge debrief and connection that I needed SO badly at that moment. I don't know what I would've done if I had had nobody from the medical team to talk to for a month! But you are so right – people just don't think about it and don't understand that need to connect and debrief and even to just cry.

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My PCP has been big source of strength for me too. But what a shame other physicians and other staff are not.

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