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

@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.

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

Hi @kristap31 . Your little guy, Owen, seems like he has been through a lot in his short life so far. I also can sense the grief and sadness in your posts. Undoubtedly, you have endured quite a bit of loss with your son, your future children that you never got to bear, and the fear of another critical illness for Owen. My goodness... you're carrying a lot of weight on your shoulders everyday.

I'd love to hear any insight as to what has been helpful for you. Have you found any success in coping through these feelings and emotions? Does talking through it help? The journaling help? Have you found other practices that have been helpful, perhaps church groups/support or other grief groups? How about reaching out to your own primary care provider?

*content warning for mentions of a suicide attempt, please read with care*

I've posted in this group several times, but until now, I haven't shared my story. Today, I'd like to do so.

I landed in the ICU in January 2019 following a suicide attempt. I was initially partially paralyzed, unable to move my arms or legs, was expected to stop breathing (I gave consent to be put on a ventilator, and was in acute kidney failure, requiring emergency dialysis.

The cruel irony of my attempt and it's aftermath is that it was my unbearable PTSD symptoms that led me to try to end my life. I was so traumatized already, before the ICU - and my terrifying time there only further traumatized me. For me, the worst of my ICU trauma isn't about invasive procedures or interventions, but rather about the loss of control over my body and the things that were done to it to save my life.

I left the ICU in kidney failure, a dialysis catheter in my neck, and most devastatingly, unable to walk due to neuromuscular damage. I spent five months as a full time wheelchair user, and currently have progressed to using a walker.

I struggle with immense guilt over my responsibility for making my life so much harder and inviting in this additional trauma. I'm addition to this guilt, I struggle with frequent flashbacks and nightmares of my time in the ICU. Eight months out, these symptoms have improved, and I've been able to do EMDR (a type of trauma reprocessing therapy) to help reduce the flashbacks - but I still deal with them on a regular basis. Because of my neuromuscular damage, I find that it is a near-constant reminder of my ICU experience. Often it feels like I can't escape it.

My mental health has been greatly affected by this experience and my difficult recovery. I have bounced back from a lot of things in my life - yet I am having an extremely hard time bouncing back from this. I'm currently in intensive mental health treatment to try and cope with what has undoubtedly been the most challenging and discouraging year of my life.

I am so grateful for this group and for the support I've already received, and to know that I'm not alone in struggling to make sense of these experiences. Thank you for letting me share, and thank you for listening.

@alex12119 I am grateful to you for having the courage to share your story and for trusting us with it. I am also grateful for this community that has been built to help each other. There is a power in being able to witness and normalize things in this life that are beyond our imagining, and being able to do that together is even more powerful. I am glad you are here.

I read your post last night after returning from a trip to Children's Hospital. Your story has been on my mind and I appreciate you sharing it, as hard as it is to hear. It is hard to know that people suffer so much and face constant, unavoidable reminders of things that can't change. At the same time, it gives me strength to know I am not the only one who faces such pain. I have shared my story briefly before, so won't repeat it. But some of the things you mentioned shed light on some of my struggles as well. I was not actually in the ICU because our rural town doesn't have one. I was in the "closest section to the ER charge station" which counts as ICU. I went from being healthy to nearly losing my life in a matter of seconds when I experienced a postpartum hemorrhage. To save my life, they put me to sleep, tried to stop the bleeding, but could not. I woke up and was horrified to find my womb and other female organs had been removed. As in, I would never again have the possibility of having a baby. The shock was incredible. I still can't believe that happened. Upon going home a week later, the staff offered no mental health support other than a website which told me I was no longer a "real" woman because of my loss. They were so glad they "saved my life" and I was devastated that I would never be the same. It has affected my sense of identity and purpose, and now I know that other women who have experienced such loss suffer with suicidal thoughts and depression as well. The scar I carry is huge, and a constant reminder of how I was "gutted." That's how it felt. Something I have struggled with following the shock and loss is how people respond. They don't allow me to grieve the loss of my future as I had hoped for it. They don't allow me to grieve the loss of every time seeing a pregnant lady knowing that has been taken from me. They don't allow the sorrow and disappointment to exist. It makes me feel even more alone in my experience. I wish we as people were "allowed" to grieve loss and voice our disappointment with how things turn out.

This is only part of my story, I have also lost a baby to stillbirth from no known cause and my six month old son spent five weeks in the PICU last summer. He was on dialysis, had a colostomy, multiple surgeries, and is currently dealing with severe peroneal nerve damage and left ankle contracture. He will have another surgery next month and his scars and injuries are also a constant reminder to me of everything he went through and his trauma. I struggle too with guilt from seeing his medical challenges and feeling I should have/could have prevented them somehow.

I hope that you can find strength to be kind to yourself in everything you are facing. You said you struggle with a lot of guilt from attempting suicide. I have struggled with suicidal thoughts too and have wondered why I do. For me it is an expression of how deeply my grief and frustration and loss have changed me. It is a crazy feeling to be out of control, and yet we all are. No one is really in control, and that is a hard reality to face. I hope you can find grace, kindness and much patience with yourself. I will be thinking about you and wishing you strength for what you need. And, keep writing! Your words can give strength to other people struggling with PTSD too. You are not alone

Smoky
First of all I must tell you that most of what I know about was told to me from my husband, sons and friends. I was in such back pain I took a pain med that I had never taken before. It was Dilodid (sp). I was allergic to it and had a very bad reaction. To make a long story short, I thought my little dog was being attacked in our back yard. I flew out of the sliding door and forgetting the steps leading down to the patio I landed on the cement. I broke 3 ribs and pelvis. My elbow looked like hamburger. I only remember the fire dept. getting me out to the ambulance. From there I know nothing.
I was in ICU for 6 weeks, then 2 weeks on a regular nursing floor. That was 13 months ago. I was on a ventilator on and off for for several weeks. When I was off it I had a tracheotomy tube. I still have it and will for the rest of my life. Luckily I am in the 20% that made it out of the hospital. Most don't. They stopped counting the times I was code blue, I think that is the right term for not breathing. It was at least 12 different times I was told. I am always sore in my back and neck, all of my muscles feel useless and sore, I still have that and headaches, dizziness, I wobble when I walk, hopelessness, my short term memory is gone, I can not form sentences and have a really hard time thinking of the correct words to say in a conversation. At first I used a wheel chair, then a walker and now I use a cane. I am extremely exhausted all the time, I cannot walk to the bathroom from the kitchen without gasping for air. If I try to do "something, anything" I am down for the count for a few days. I didn't know anything about this syndrome until yesterday. I happen to have gone in to see the doctor that took care of me in the ICU. He just happened to read something about it. I'm not sure any of this will help but it sure made me feel better for having found this site to know I'm not alone.
I ended up in the ICU from a horrible reaction to a pain med the doctor prescribed for me. I have been suffering from severe back pain for years. I am now allergic to ALL pain meds. It makes it rather difficult to get through surgeries. Oh well, carry on is my motto.
That's all I can think of at the present. I ended up with a trachea that after speaking with the doctors will remain for life. I am hoping to speak with "someone" at the hospital to set up or produce a pamphlet to give to those who are subjected to this syndrome. I think it would be a more proactive way to deal with this than to let the patient or family have to endure the side effects of the ICU and having to be intabated.
I haven't addressed this to anyone exclusively. From reading all the stories that we've had I think we all have had a pretty hard time. I know none of us deserved it, wanted it, didn't know what to do about it, etc. It just keeps on giving once you've got it. I will have been out of the hospital for a year and have not returned to myself at all. I am on depression meds. of all kinds and it doesn't feel like it is working. I wish you all better days.

My ICU experience occurred 10 years ago. Currently my family and I are experiencing a situation that is deeply touching each of us. So memories have been reactivated as we deal with this issue.
During my quiet moments, I thought of this discussion group and all of you who have so generously shared. I gain strength in reading some of the past conversations. I want to send a virtual hug to each and everyone of you.

It has been a while since we have heard from some of you. Do you have any updates to share here?

We really do learn from each other and we don't have to be alone. I am eager to welcome any new members.

As the one year anniversary of my ICU stay approaches, I am both celebrating victories and facing new challenges. I previously shared that I suffered neuromuscular damage that left me using a wheelchair for six months - I'm happy to report that through extensive PT and the passage of time, I've progressed from wheelchair to walker, and now to just a cane! I'm thankful to be able to get around easier and get back on public transit, and to have so much more of the world be accessible to me. However, despite this improvement, I'm seeing an increase in intrusive re-experiencing symptoms (sometimes full on flashbacks) to my time in the ICU with the anniversary coming up in January. On one hand I'm thankful for the new year ahead - and, I also want to remain realistic that my symptoms may intensify as the anniversary gets closer.

Rosemary, I am thinking of you and your family during this challenging time. Thank you for reaching out. I came to this page tonight unsure if I would share, but your words have encouraged me to do so.

@alex12119
Thank you so very much for your response. I appreciate your kindness toward me and my family during an unpleasant experience. The challenging situation for me was that both involved someone else in ICU. There were 2 separate situations, and each involved instances that were too closely related to my past experience(s). One had a sad ending, and the other, (an infant) has a hopeful outcome.
Congratulations on the victories you have achieved and are able to celebrate! I have a sense that you are a very determined individual and that you will not be turned away from a challenge at this point in your journey to your future. With your January anniversary within view, have you thought of any thing that you might want to do to divert your mind from some of the hard times? Maybe by planning something special and looking forward to a special event would be something to look forward to. How do you think that would work for you?

Since we are in the midst of the holiday season, and I am aware that many people were not looking forward to the holidays and celebrations. For a variety of reasons it is not the happy time because memories and sadness don't magically end at a certain point after a major event like a serious illness or a loved one's death. Reminders like sights, sounds, smells, etc often bring back a sudden and unexpected flood emotions. I won't pretend to know what kind of symptoms that you might experience, but I can understand your concern for the flashbacks that are hiding just out of sight. Everyone of us is different so I would like to offer you a link to some people who might have some ideas from their own experiences that might be interesting to you in the Group>discussion>Just Want ToTalk.
Have you taken a look at the Discussion Group>Just Want To Talk? https://connect.mayoclinic.org/group/other/ Join the discussion! Ask your questions, share your story, or just say hello. Here are some topics that could be a good starting point: How about a laugh, (hopefully); Art for Healing; Holidays are not happy family times for everyone; Music Helps Me; What Pets Can Do: Health and Healing.

Alex12119, Have you discussed your fears about flashbacks with one of your doctors or someone whom you can trust? I am here, and Connect is open 24/7. How can i help you?