What did you find most surprising once you were out of the ICU?

Posted by Annie Johnson @andreab, Nov 5, 2018

Being in the ICU as either a patient or a family member is a difficult experience for most people. However, transitioning out of the ICU can be challenging as well. When either you or a family member no longer required critical care and were transferred out of the ICU, what were some of the things that surprised you the most?

@rmftucker

I'm glad I stumbled across this morning when reading my Mayo Clinic Connect newsletter which I have been receiving since subscribing? several years ago when my husband was diagnosed with Alzheimer's Disease with vascular dementia. That was a very stressful time, and the dementia support group helped me so much to understand what was going on and how I could process all of it. Now, I have just returned home after being in ICU five days and a day and a half on the surgical floor following emergency perforated peptic ulcer surgery. I also had Afib about 6 hours after surgery and a tube through my nose draining my stomach. The Afib righted itself about 12 hours later after meds kicked in. Didn't need any further treatment for that. I also experienced the feeling of being abandoned after being transferred to the surgical floor on the day before my release. It was so quite and I was used to someone checking on me almost hourly and now I saw no one. Since I was at the farthest room from the nurses' station, I didn't even hear any noises. I came home with a long list of meds and lots of instructions, but I have been so tired.
From other's messages, I will just have to realize it will take longer than I thought to get back to my busy self. I am 83 years old, but very active. Live in my own home, drive my car, involved in several organizations, editing a newsletter for three of them, and keep busy with church activities as well as visiting my husband, age 88, at the care center every other day. It is about a 45 minute drive to see him, so I have a couple friends who are giving me rides to see him for the next couple weeks. My daughter lives about 10 blocks away but isn't able to drive. She gets around by bicycle which isn't much of an option for me.

Jump to this post

@rmftucker I am glad that you found this thread! I think you will find the conversations very helpful in light of what you have recently been through. While reading your post, I wonder do you feel like some follow up contact with the ICU team would have been (or would be) any help to you in any way?

REPLY

No, I din't think I need any followup contact with ICU. They were so helpful while I was there. I told my kids it was like being at a spa without being able to eat anything. It was just helpful to be able to read others in this list and know that the "separation" I was feeling was normal, and would improve with time. I've been able to drive, with my daughter riding along, to visit my husband who is an a Care Center 45 minutes away. I didn't feel comfortable making that long trip alone at first, but I'm fine now and assuming my regular daily activities. Maybe a little slower but that will improve I'm sure.

REPLY

My lack of stamina in doing anything. Walking to the shower felt like I ran around the block.

Liked by Annie Johnson

REPLY

@rmftucker I wanted to check in to see how you're doing. I also wanted to let you know about Post Intensive Care Syndrome (PICS) page on Connect. Pages (https://connect.mayoclinic.org/pages/) are blogs written by Mayo Clinic experts. ICU nurse practitioner Annie @andreab has written and great series about about PICS called Breaking It Down (https://connect.mayoclinic.org/page/pics/). If you scroll through the newsfeed posts, you'll see articles describing prevention, recovery, the body and the mind. Perhaps these will be useful for you.

You must've been concerned not only for your own health, but I bet some of your first thoughts went to your husband and wondering how he might have reacted to your absence.

REPLY
@colleenyoung

@rmftucker I wanted to check in to see how you're doing. I also wanted to let you know about Post Intensive Care Syndrome (PICS) page on Connect. Pages (https://connect.mayoclinic.org/pages/) are blogs written by Mayo Clinic experts. ICU nurse practitioner Annie @andreab has written and great series about about PICS called Breaking It Down (https://connect.mayoclinic.org/page/pics/). If you scroll through the newsfeed posts, you'll see articles describing prevention, recovery, the body and the mind. Perhaps these will be useful for you.

You must've been concerned not only for your own health, but I bet some of your first thoughts went to your husband and wondering how he might have reacted to your absence.

Jump to this post

I am doing well and have had two follow-up appointments with my primary physician and the surgeon. All is well, and I am slowly getting back into my normal activities. It is just 3 weeks from my surgery and everyone tells me it will take time. I'm trying to be patient. I don't think my husband really understands how serious it all was, as his memory is in 10 minute times now, and he sleeps most of the time I am there. We had Thanksgiving dinner with him at the care center and they make it into a real celebration, so h enjoyed that and my family appreciates all they do. In the winter I just take one day at a time. If school is cancelled, I just stay home.

REPLY

I was aghast that I knew about PICS but the ICU staff and D/C planner did not. The hospital where I was in ICU could not provide resources to help me. About a month after open heart surgery, when I was no longer worried I'd survive, I began having painful flashbacks and reliving the painful and prolonged extubation, as well as the pain every procedure and tube caused. I had to call the suicide hot line to speak with someone about my mental anguish. That did help, but why didn't the ICU have this on their radar?

REPLY

Shortly after the birth of my 4th baby, I experienced a rare childbirth complication known as Amniotic Fluid Embolism. I was so fortunate to have been in a hospital that had enough blood for the rapid blood transfusion that was needed to save my life. I was given 75 units of blood during the surgery to stop the massive internal bleeding. I spent a week in a medically induced coma on a ventilator in the Shock Trauma ICU. During that same time, my baby was in the NICU. We are so grateful to the doctors and nurses that saved our lives!!!

Your post asks about what surprised us, and this is the surprise I have been dealing with as of late…It has been over ten months since my time in the ICU. I have returned to the patterns of my life, started working again, and am busy with my four children

But over the last month or so, I have experienced this overwhelming sadness that I did not expect. I have no history of depression and this inability to rally my mood has been so surprising and difficult. Has anyone else experienced overwhelming grief so long after a medical event? I truly thought I was over this and could move on with my life, and now I feel like I am a bigger mess than I was when I first got out of the hospital.

REPLY

Yes. I experienced it twice. First a few months after I had breast cancer surgery, and recently after I had open heart surgery. Get help from your care team right away. If they don't have any experience with PICS (post intensive care syndrome) then keep trying to you find someone who does.

Liked by Annie Johnson

REPLY
@amandacgrow

Shortly after the birth of my 4th baby, I experienced a rare childbirth complication known as Amniotic Fluid Embolism. I was so fortunate to have been in a hospital that had enough blood for the rapid blood transfusion that was needed to save my life. I was given 75 units of blood during the surgery to stop the massive internal bleeding. I spent a week in a medically induced coma on a ventilator in the Shock Trauma ICU. During that same time, my baby was in the NICU. We are so grateful to the doctors and nurses that saved our lives!!!

Your post asks about what surprised us, and this is the surprise I have been dealing with as of late…It has been over ten months since my time in the ICU. I have returned to the patterns of my life, started working again, and am busy with my four children

But over the last month or so, I have experienced this overwhelming sadness that I did not expect. I have no history of depression and this inability to rally my mood has been so surprising and difficult. Has anyone else experienced overwhelming grief so long after a medical event? I truly thought I was over this and could move on with my life, and now I feel like I am a bigger mess than I was when I first got out of the hospital.

Jump to this post

@amandacgrow I am so glad you found this forum and shared your story with us. What an incredible experience you went through. I am so happy for you and your family that you are all well and back running as a normal family does! But that word normal can seem strange, because if you are experiencing your recovery from this event like many others have, things may not seem quite "normal". You mention getting back to your "patterns of life" with kids and work, etc. Many people have talked about difficulties when getting back to those patterns – especially noticing it work. Some people tire more easily, can't concentrate as well, or physically cannot do what they once used to do. And this is actually very normal for many people who have experienced critical illness or injury. The feeling of sadness and grief is also something that I have heard many other share.
I'd like to pull @muriel66 into this conversation as she has shared very kind and wise words with others over the months on this forum, specifically dealing with emotions following critical illness. Thank you for joining this important conversation.

REPLY
@heartbreaker

I was aghast that I knew about PICS but the ICU staff and D/C planner did not. The hospital where I was in ICU could not provide resources to help me. About a month after open heart surgery, when I was no longer worried I'd survive, I began having painful flashbacks and reliving the painful and prolonged extubation, as well as the pain every procedure and tube caused. I had to call the suicide hot line to speak with someone about my mental anguish. That did help, but why didn't the ICU have this on their radar?

Jump to this post

@heartbreaker I am sorry you had such a difficult time during your recovery. To physically survive what you went through only to then be left with the intense emotional difficulties seems entirely unfair. However, you are certainly not alone in this. Feeling this way, having flashbacks and nightmares, is very commonly shared among people who have survived critical illness/injury. Post ICU syndrome and the experiences that people have following critical illness/injury are really just now getting the attention from the critical care world that they really deserve. I do want to assure you that there are collaboratives and teams around the world who are coming together to help raise awareness of this issue and who are working to help people not only survive the ICU but to survive and heal in a complete way which allows them to regain as much of their pre-ICU life as possible. Thank you for adding your story to this very important conversation.

REPLY

Here is a link to our newest Blog post that relates to this original post! Feel free to share with us the story of your transition out of the ICU…
https://connect.mayoclinic.org/page/pics/newsfeed-post/beyond-the-icu-discharge-from-the-icu/

REPLY

I wish I would known that a mucous plug could develop after spending 8 days on life support. A couple of days after leaving ICU I would cough and my airway would be blocked for a few seconds – very scary. One night it lasted longer than a few seconds, I coded and went back to ICU on life support for another 24 hours. It was very hard to explain 'I can't breathe' to my medical staff because once they arrived after I pushed the call button I was already better. I was still pretty foggy after being in ICU and 'I can't breathe' was all that I could think of to say. Of course when you're talking to someone and say 'I can't breathe' they're going to tell you 'you are breathing, you're fine'. A year after my illness, a friend's husband had an extended ICU stay. I told her about my mucous plug incident and to make sure her husband stayed on top of the breathing treatments and to use all coughing devices provided – pickle, incentive spirometer, etc…. She was thankful for my advice as he did end up getting a mucous plug.
I have a long list of things that still surprise me 18 months post septic shock/ICU…that's just one that stands out the most.

Liked by Annie Johnson

REPLY

I am new to this community and to connecting with others who have survived the ICU. Reading other's experiences has been so helpful, so thank you all for sharing. I feel so much less alone. Similar to what others have shared, what surprised me most was the lack of education on PICS upon discharge, and the continued lack of awareness from my healthcare providers. While I was still in the ICU, the psychiatry team told me my experience could be accurately described as trauma. That was the first and last time anyone checked in about how I was doing beyond my lab values and organ function. There was no follow up from that conversation, no post-ICU clinic, and most surprisingly, I had to discover PICS through my own research and bring it up to my doctors, despite presenting with flashbacks, nightmares, and other intrusive re-experiencing symptoms of my time in the ICU, in addition to having ICU acquired neuromuscular weakness that has left me using a wheelchair. I couldn't believe that all of this, including the emotional and physical effects are not only named, but common! How is there not more awareness? I'm doing my best to educate the people around me as I heal and process my own experiences, hoping that maybe I can help someone else.

REPLY

I was not in ICU but was in a coma Jan 2019, for 5 days. High ammonia levels, my Meld was 26. I had a lot of hallucinations and paranoia after I woke up. It took almost a week to feel better. They attributed my cognition to a high ammonia level. 24 day of lactulose worked but caused me to have the runs nonstop.

REPLY
@alex12119

I am new to this community and to connecting with others who have survived the ICU. Reading other's experiences has been so helpful, so thank you all for sharing. I feel so much less alone. Similar to what others have shared, what surprised me most was the lack of education on PICS upon discharge, and the continued lack of awareness from my healthcare providers. While I was still in the ICU, the psychiatry team told me my experience could be accurately described as trauma. That was the first and last time anyone checked in about how I was doing beyond my lab values and organ function. There was no follow up from that conversation, no post-ICU clinic, and most surprisingly, I had to discover PICS through my own research and bring it up to my doctors, despite presenting with flashbacks, nightmares, and other intrusive re-experiencing symptoms of my time in the ICU, in addition to having ICU acquired neuromuscular weakness that has left me using a wheelchair. I couldn't believe that all of this, including the emotional and physical effects are not only named, but common! How is there not more awareness? I'm doing my best to educate the people around me as I heal and process my own experiences, hoping that maybe I can help someone else.

Jump to this post

100% correct. We hope the Mayo N.P.'s take note of this trauma, which I also experienced, and start a program to educate clinicians in the U.S. Something good will then come of it. Offer CEU's. Otherwise, no one will read the literature.

REPLY
Please login or register to post a reply.