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

Thanks for the great words of comfort @rosemarya Rosemary. In these times of COVID restrictions, no I did not have anyone coming into the hospital to spend time with me. I have had conversations with my mother about the updates she received daily from the hospital staff.

I ended back up in the Emergency Department 2 nights ago for issues breathing again. Luckily most of my issue this time turned out to be anxiety. But I do have to say it was a source of great comfort and reassurance to have lung x-rays and scans done again and hearing more than one doctor comment has have strong of an improvement my lungs show.

Jennifer

Hi Colleen, I'm sorry, I just saw your response. Yes, I suppose having the trach set sort of validates that yes, that really did happen! (Not that anyone would doubt it, since I have scars to prove it, but the memories are so, so blurry.) I am just now, 8 months out and 85% recovered, finally starting to "trust the process" and believe that yes, I can still keep improving. This is perhaps the toughest 15% to get back, though: my short-term memory and the 30 or so IQ points that I swear someone suctioned out in the ICU! I had a hypoxic brain injury due to the length of time that I was on the vent (and possibly because I waited so long to call 911). However, no one can define what that means long-term, and no one can guarantee that I'll get my full brain function back. As so many Severe Covid survivors are learning, there is much to more to learn about this disease than I think we know even now, a year out from the first confirmed cases.

At my therapist's advice, I have held off on getting my medical records as I do have PTSD symptoms and a lot of residual anxiety. As she says, it's normal to be anxious about your whole world falling apart when it really DID fall apart before! But at some point, I just want to understand, to mourn, and to celebrate the nitty-gritty of what my body and psyche went through, laying sedated and in complete isolation for those months. Thanks for asking!

@jready, I am happy that in spite of the many difficult hurdles you have encountered in regards to the ICU and all of the 'stuff' that has happened, that you are now experiencing some positive experiences. Even that ER trip, brought a great message from the doctor about the e-ray and scan results - strong improvement in lungs!
Are you at home now? Have you, or when will you be able to resume any of your normal day-to-day living activities?

@donna562, While you are learning about the after effects of the Covid, we (my family) are learning about the recovery and after effects of a serious spinal cord injury and paralysis for our adult son. It is definitely a learning process for us and a marathon of effort and courage by him. Your journey has not been easy, and I commend you for the courage and the determination to keep moving forward.

We are daily able to celebrate tiny daily improvements in our household as we witness the effects of his efforts. I believe that with time, and with the effort and therapy that you are receiving, that you will continue to experience improvements, and to adjust to your new normal, just as he has.
Are you able to resume any of your favorite activities yet? How do you pass the time now that you are out of the hospital?

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!

@marywh, I want to welcome you to Mayo Connect. You have had quite an experience, and I hope that you are home and healing now.

Like you, I was air transported to Mayo from my local ICU, but that was 12 years ago, before COVID restrictions. My husband was able to be at my side and I really depended on him for everything, both of us had left our family and friends at home 800 miles away.
How did you (and he) manage to get thru the separation? Was he nearby? Were you able to communicate with him via technology?
What was it like for him to be outside and unable to take care of you or be at your side?

Thank you so much for responding. It was actually, in some ways, harder on him than on me. He was totally alone with only his phone to connect with family and friends. Even restaurants were closed due to the Thanksgiving holiday and Covid. At one point, when I was finally moved from the Cardiac ICU to the Cardiac floor there was a nurses break room where I could go and see him out the window 3 floors down by the parking garage. I felt I really someone to advocate for me, and he wanted to be there. After the first few days we (my husband and I with the nurses/doctors) got better at using FaceTime anytime they were discussing any procedure or just in general updates and what was going on. That helped even tho not ideal.
What has been your recovery and followup? Twelve years, that gives me great hope!

@marywh, I think that it sounds like you are making a good progression into a new chapter in your life as you are now beginning to see these events as in the past.
It was difficult for my husband, too. He was able to be with me; we were in a preCovid19 world in 2009. He still does not like to talk about it. He was the one who had to communicate with the doctors and to deal with the day by day challenges.
I was is a situation where Hospice Care was a real possibility, and even mentioned as the alternative to being accepted and flown to Mayo. I used to tear up easily and often.
My memories of the week in ICU in Kentucky and my first several days in the Mayo Methodist Hospital have become an accepted part of my life history. My husband and our sons have pretty much filled in the details that I wanted to know, and I can now value the experience as a catalyst for me to relate to others who have similar experiences, especially friends who have family members who just don't 'get it' and expect them to just 'snap' out of it.
Mary, I see that you are participating in the Heart Rhythms discussion. I would encourage you to keep up with communicating with others who are experiencing similar health issue. I have learned that by sharing with other patients with similar conditions, we find strength and we find purpose as we learn from each other, and we support each other.

How long has it been since you returned home? Do you feel that you are moving forward since your ICI experience?

Goodness, I feel like I’ve found my place finally.

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.

I’ve been and continue 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.