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

@snetterpie
I want you to know that you are always among friends here on Connect. That is why we exist - to share our experiences and to support each other because we each 'get it' and are able to listen and respond without judgement. Does that make sense? I joined Connect when I was looking for someone who had similar experiences as me, because nobody really understood my mix of emotions afterward (transplant joy mixed with recipient quilt). I found this to be a place of compassion and healing and encouragement. And, we are here 24 hours a day!

Here is a Mayo Connect Blog where Mayo staff presents articles. It is easy to scroll thru the Newsfeed and locate something that interests you.
Post Intensive Care Syndrome (PICS)
https://connect.mayoclinic.org/blog/pics/
Have you ever considered journaling? Some of our members have found a path thru difficult life experiences by journaling.
Just Want to Talk >Journaling - The Write Stuff For You?
https://connect.mayoclinic.org/discussion/journaling-the-write-stuff-for-you/
Just Want to Talk Discussion has a long list of topics like: pets, gardens, walking, sharing photos, foods, even jokes. Scroll and join in anywhere.
https://connect.mayoclinic.org/group/other/
@snetterpie - if you want to direct a question or a comment to a particular individual, you can include their @name.

I hope that the sun is shining where you are today.

The sun ☀️ is definitely brighter this morning with your support.

I am soaking up all the information I’m finding and am feeling such joy to know that I’m not crazy. This has a name. Reading others stories and comments that mirror a lot of the same things has done more for me than I could have ever imagined.

Thank you for reaching out to me and all your ideas and resources!

@snetterpie, I'd like to add my welcome. I see you've connected with @rosemarya and @lioness. I'd also like to invite @marywh @seanne @heartbreaker @donna562 @jready @psd0972 @alex12119 @cindyvag back to this discussion. Let's pull up our chairs into a circle of support.

Snetterpie, how has your physical recovery been over the past 2 years? Was the flash back that happened recently the first time you've been confronted with the emotional and mental impact of your ICU experience?

@snetterpie I am so happy you found this amazing group of people who also happen to be ICU survivors. What you are experiencing is so real, and you are definitely not alone in this experience. On a personal note, my son experienced a life threatening asthma attack 4 years ago at the age of 5. To this day when I hear someone in distress say "I can't breathe" it automatically triggers panic in me and I can't help but shake. This is just such a human response to perceived threat.

I hope you have found help in this space. Support groups and conversations with others who have experienced similar things can be incredibly helpful for recovery. However sometimes people need more guidance during their recovery time - and recovery doesn't have a time limit. For some it's days to weeks. For others it can be years. When this is the case post ICU follow up clinics, where you can connect with experts focused on critical illness recovery, can be key to the next step in recovery.

If you are interested in more information regarding this, please send an email to: mayopostICU@mayo.edu

Thank you really from the bottom of my heart 💜

I’m feeling better today and making some decisions about my hospital records etc.

I love this group!

My recovery physically was really slow. After discharge, I could not sit for 15 minutes without laying down again. I was exhausted, felt horrible and had nothing given to me at discharge except follow up appointments.

I had a psychiatrist that saw me every day for 2 minutes and when I tried to talk about the dreams and nightmares, she just said you were delusional and it wasn’t real. That’s it.

In the beginning, I asked for some details to fill in time lapses, but my friend that found me on the floor could only tell me so much because I was taken by helicopter to Rochester and he stayed home with my puppy.

I had no family members come visit. My mom and sister were 5 hours away and sister and her husband were in CO. My dad had already passed a year and a half before that and he and I were close.

So, I had no one with me while I was in the coma or 14 days later when I was discharged.

I knew puzzle pieces were missing and wanted to fill that time in, but couldn’t.

The helicopter 2 weeks ago was my first panic attack and brought me right back to waking up alone and didn’t know where I was. My unconscious brain connected to it and I froze, shaking, staring, nauseous and afraid. I’m the strong one and I was a puddle.

Unfortunately, I have been hospitalized with double pneumonia and Addison’s Crisis’ so many times since then. I was inpatient in September, October into November, December and January. I’ve done pretty well since then.

My first incurable disease is Addison’s. I have had asthma since I was born, Hashimoto’s Disease, (both autoimmune) and have no stomach. My esophagus is connected to my intestine. There’s more, but you probably didn’t want a novel 📖 to read.

I’m still suffering from anxiety from 2 weeks ago and hate feeling so out of control.

It is helping to read each other’s stories and everyone has been so kind to me. Thank you!!

The knowledge exchange in the Intensive Care (ICU) group does not go unnoticed. Your tips about what to expect after ICU helped to create this article written for the Mayo Clinic app. Your tips are knowledge for patients by patients and beyond Mayo Clinic Connect.
– After the ICU: Advice from people who've been there https://www.mayoclinic.org/CPT-20514168

Special thanks to @seanne @heartbreaker @rmftucker @plexiclone @psd0972 @alex12119 @amandacgrow.

My friend’s husband just
spent some time in ICU and is currently in the hospital. I just sent this to them! Thank you!

I was touched to see this article come out, and to receive the email that my words were included. I'm now almost three years out from my ICU stay. I go through different phases of how I try and work through the symptoms. Sometimes I need to withdraw from spaces like this because it's too painful to engage, and other times, I feel up for sharing and connecting with others. Anniversaries are tough for me, particularly the ones around my ICU stay. The whole experience has been on my mind more frequently as January approaches. I'm doing a lot of thinking about holding space for my grief this year, and for all the ways in which my life changed as a result of my illness. I have found healing in watching my body regain some strength (I'm still amazed at my ability to walk down the street), and in gaining some distance from that time in my life. However, there are harder days, and I really feel that a lot of the people around me expect me to be "over this" by now, so I tend to speak about it less than I did initially. I confide in my closest friend, who I am overwhelmed with gratitude for. And I thought I would reach out here too, and maybe try to be a bit more active. I'm sending support to all of you, and grateful to have this space to return to after all this time.

In Jan.2020 I spent five days in the ICU following surgery for an intestinal obstruction complicated by my age ((91), and a cardiac co-morbidity. I had the full-blown ICU syndrome which was one of the worse experiences of my life. The acute manifestations receded after several weeks, but residual symptoms have persisted now for over a year and a half. I know my age and my cardiac problem obviously contribute to my bad feelings. However, I feel strongly that lingering PICUS is responsible for a very significant part of my symptoms. What I continue to experience is, in most ways, almost identical to those experienced by the Covid "long haulers." I have never had any indication of Covid before or after my hospitalization and doubt this the similarity is only coinsidence.
I have tried all the commonly recommended treatments (PT, social contacts, mind exercises) without improvement.
I am discouraged but not depressed; simply tired of the way I feel,.
Charles

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