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

Hi 🙋🏻‍♀️, my name is Jane.

I had a full blown panic attack the other day after picking up a hospital pharmacy medication refill.

I heard the Mayo One helicopter 🚁 landing on the roof. Before I even saw it, I froze. I forced myself to exit the building and stared up watching as they finished landing and taking the patient out on a stretcher.
I started to shake, got sick to my stomach and couldn’t move.

That had been me, 2 years ago, in a coma, not remembering four days of my life. How did my body know what my conscience brain could not.
I awoke four days later in Rochester, MN ICU with multi organ failure, an Addison’s Crisis, double pneumonia, a cast from my fingertips to my armpit being held up by a rod, a concussion and I didn’t know where I was or what had happened. They had someone assigned to my room 24 hours a day as I was alone.

I had very vivid dreams about a man in my room, speaking with a foreign accent and he was denying me the help I needed to urinate. Of course, I had a catheter in and didn’t need to use the restroom. I was delirious. I thought no one would listen to me. I was alone in my brain fog.

After reading some of your stories and doing some research, I knew that I was only one of many that have been experiencing PTSD ICU.

Does anyone out there know where I’ve been? Or continues to be haunted by days that I don’t remember or puzzles that I can’t put back together. There are so many missing pieces.

Hi 🙋🏻‍♀️, my name is Jane.

I had a full blown panic attack the other day after picking up a hospital pharmacy medication refill.

I heard the Mayo One helicopter 🚁 landing on the roof. Before I even saw it, I froze. I forced myself to exit the building and stared up watching as they finished landing and taking the patient out on a stretcher.
I started to shake, got sick to my stomach and couldn’t move.

That had been me, 2 years ago, in a coma, not remembering four days of my life. How did my body know what my conscience brain could not.
I awoke four days later in Rochester, MN ICU with multi organ failure, an Addison’s Crisis, double pneumonia, a cast from my fingertips to my armpit being held up by a rod, a concussion and I didn’t know where I was or what had happened. They had someone assigned to my room 24 hours a day as I was alone.

I had very vivid dreams about a man in my room, speaking with a foreign accent and he was denying me the help I needed to urinate. Of course, I had a catheter in and didn’t need to use the restroom. I was delirious. I thought no one would listen to me. I was alone in my brain fog.

After reading some of your stories and doing some research, I knew that I was only one of many that have been experiencing PTSD ICU.

Does anyone out there know where I’ve been? Or continues to be haunted by days that I don’t remember or puzzles that I can’t put back together. There are so many missing pieces.

@snetterpie Welcome to connect We are a group of caring people we can't diagnose but help when we can .That had to be terrifying experience you had but to have it all played back it will probably take time to feel better and put it in the back of your mind.Have you told all this to your Dr? He can give you some advice or recommendations that will help maybe just a professional to talk to who can help you I wish you the best

@snetterpie, Welcome to Mayo Connect. I can identify with your flashback and your emotional/physical response to the arrival of the helicopter landing on the roof. I am glad that you found this discussion, and that you found comfort in knowing that you are among friends who have had similar experiences, and who 'get it'.

12 years ago, I was transported by ambulance from ER to a regional ICU at a major hospital in KY where I spent 5 days in critical condition. Then I was flown to Mayo MN. I was half aware of what was happening, and i knew that my only options were a brief stay in hospice care, or a chance at life at Mayo. My most difficult days were the first 5 days in the ICU with acute kidney failure and liver failure while waiting for a liver transplant. I did not know what or when things happened, but I did have a family member at my bedside 24/7and that did help me to get answers and fill in some of the gaps in my memory.

For the first couple years after this occurred, I used to get shivers and chills and tears when events sparked a memory. I used to cry when I passed an ambulance along the highway or heard the siren.
I found that if I looked at my medical records that I could fill in the gaps in memory, or most of the events like strange rooms and lights where procedures and tests occurred.
I did not, however have the nightmares that you describe. Are these still occurring?
How did you find us at this particular moment of need? How are you today?

No I haven’t. I have 8 different specialists spread between Eau Claire, WI and Rochester, MN and I’m so busy with all of them, I tried to put it all behind me. Now, it’s all jumping back since the helicopter incident a few weeks ago.

Counseling appointments are an entire year out with my insurance and to tell you the truth, I have no idea who to even tell.

I have no family support, have an only child who just got his Masters and Doctorate Degrees and is working 60 hours a week interning. I can’t put this on top of all he has already.

It’s such a strange diagnosis that I don’t think my friends would even understand as so many health care providers don’t even know.

I feel better that I’m not alone now though and thank you!

Thanks for starting this discussion and asking the question. I was life-flighted to Mayo after diagnosis of tachycardia, and receiving two shocks to get my heart to stabilize. They admitted me to the cardiac ICU, and 4 days later I was implanted with an ICD. During the procedure my lung was nicked, adding another week to my stay. Two days after the procedure when I was moved to the cardiac floor the biggest surprise was not only the quiet of the floor, but the cut-back of care. The nurses were all the way down the hall, instead of right outside my room. Needless to say, this caused some panic of whether or not they would be close enough to help me if needed, after all I’d been through. Not having to wear the blood pressure cuff was also a nice change! The restrictions because of COVID were also a game changer. While I totally understand and appreciate the precautions to keep everyone safe it was really hard to not have my husband close to advocate for me!

Dear Teresa, Thank you for your kind and encouraging words. Every bit of support helps!
I neglected to add one more positive about journaling. It can take emotional weight off the family. Here's how:
Various family members stayed with me around the clock in the ICU. They experienced my frightening ups and downs -- the crazy lab values, the coma that was slow to end, the respiratory failure, etc.
Plus they had to face the frightening reality that I might not survive, and if I did I might be seriously brain damaged.
Of course I knew none this. And once home I was full of questions about what I'd been through. It didn't dawn on me that asking about my hospitalization -- and asking the same questions repeatedly because I couldn't remember their answers -- continuously re-exposed them to their own ICU trauma. It was an awful thing to do to my loved ones.
Once I figured this out, I asked each person if I could ask them one final time about what I they saw me go through and what they themselves went through. It was pretty wrenching, yet all but one agreed. I wrote everything down in my new journal.
Since then I've made a concerted effort to not bring up our shared ordeal and only discuss it if they want to. Instead I'll reread my journal entries. As I learned more and more about PICS those entries became puzzle pieces I could put together to gain more understanding.
I also use my journal to write down thoughts, feelings, frustrations and observations I don't want to burden my family with. They went through so much for me. I owe them the kindness of letting them put my illness in their past.
As for me, the experience remains with me, in no small part because my docs say I could have a repeat of the core issues that hospitalized me initially.
Bottom line: Journaling is definitely helping me cope, both emotionally and cognitively. Hopefully writing this here will encourage others to journal, and they'll see benefits, too.

@snetterpie I'm glad you found our great group we are compassionate caring
That may help people Have you thought of telling a minister/priest just to talk to?that might help. I don't know if your religious or not but when I have a problem and don't talk to anyone else about it I read the Bible ,meditate on it sleep on this and usually the next day I find the solution ,others who have experienced this kind of problem those who have PTSD might be better to talk with you Everyone is different in how they handle things hope some of my suggestions may help Be save

@snetterpie I don't think he,d mind maybe you could just ask him if he would mind talking to you about a problem 😏 when he has the time. ?