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Not sure where I fit in here but this is my story...
Prior to my CABG x4 open-heart surgery on December 21, 2023, I was given a tour of the ICU/PACU by two nurses, one of whom I believe was the charge nurse. They explained that after surgery I would be intubated and restrained, so I was prepared for those aspects of recovery. However, I do not recall any discussions about the level of pain I might experience, and its intensity came as a shock. I also expected someone to be in the room when I regained consciousness.
When I woke up following the surgery, I was still intubated and restrained, just as I had been told to expect. The first thing I noticed was a large analog clock over the door, showing 3:00 a.m. I immediately became aware of the pain, which I recall rating as 8 out of 10. If I had to use one word to describe the pain, it would be primal.
I tried to find the call-light remote, feeling around both sides of the bed and along the inside of the rails, but I couldn’t find it. I attempted to knock on the bed rail with my knuckles, but it made very little sound. Eventually, I moved my restrained arm as close to my body as possible and hit the rail twice, as hard as I could, to make more noise. I paused, listened for any sign that someone was coming, and after hearing nothing, struck the rail twice again. In those moments, I felt extremely alone and forgotten, aware that I was helpless and in pain, and I didn’t know if anyone knew where I was. It was after this second set of bangs that a nurse entered the room. I believe her first words were, “I thought the bed had fallen over.”
Once that nurse arrived, I never felt alone again. I believe another nurse remained in the room with me most of the time until the breathing tube was removed around 8 a.m.
At one point, the nurses turned off the ventilator to see if I could breathe on my own. I remember them encouraging me to breathe, and I was trying, but I couldn’t. I heard someone say my oxygen level had dropped to 40 percent, and they turned the ventilator back on. I was terrified, convinced I was going to die. I heard the nurses discussing my condition.
The breathing tube was finally removed around 8am.
In the two years since my surgery, I would say that my physical recovery has been great. I have lost 60 pounds and am now a regular at the gym.
Emotionally, that is another story. I have experienced a flashback of the fear that I experienced during the ventilator test recently. I know that there are more issues lurking around the memory of waking up alone. Over the last couple of months I have experienced a couple of anger outbursts and the stress is affecting my marriage.
The thing that has probably helped me the most is the time I spend at the gym. I call it treadmill therapy. I have shed a lot of tears on the treadmill.
Posting this on the 2 year anniversary of my surgery.
Not sure what I hope to achieve with this post but that is my story.
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@the3ameffect, welcome. You fit in here. I'm so glad that you posted your story. The flashbacks, recall and traumatic memories have a name. This is referred to as post-intensive care syndrome. I encourage you to read more about it in this expert blog from Mayo Clinic:
- Post Intensive Care Syndrome (PICS) Blog https://connect.mayoclinic.org/blog/pics/
@andreab, Director of the Mayo Clinic ICU Recovery Program. breaks down all about PICS in the series of blog posts called "Breaking it Down ..."
PICS-Family can also affect family members too.
Members like @mir123 @karukgirl @lamphey @lynngs44 @ew62 may not have your experiences, but they too have been in ICU and may have support or coping strategies to share.
Thank goodness that a nurse stayed with you after you were able to get their attention. That must have provided comfort after feeling alone and forgotten.
@the3ameffect, was this the first time that you wrote your story? Have you ever spoken to a counsellor about your experiences? Sending understanding.
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3 ReactionsColleen brought me in on this--and I can truly relate to your experience although mine was different and long in the past. Fifty years ago--I was 21--I spent 30 days in the ICU hovering between life and death with what was most likely swine flu. It might not be good news that this still affects me, but my life changed dramatically. It was highly traumatic for a young person. But I can share what has helped me a lot over the years. First of all, you are ahead of the game just in being able to understand what happened to you, and to be able to write about. I feel that having a narrative really helps. Over the years I have had psychotherapy, hypnosis (quite useful), and PT for residual physical problems. Also took up meditation as a way to calm body and soul. When I came to Connect a few years ago it was for breast cancer. I was amazed to see discussions about the ICU. It reawakened my memories but for the first time my experience had context, and I wasn't alone. What you wrote can help all of us understand your experience and the experience in general. Thank you, and do stay in touch. The passage of time helps, but I found that it didn't help completely. It is hard to explain to other people what it was like. Know that you are not alone, and I do believe that every effort--such as your exercise--will help.
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6 Reactions@colleenyoung earlier this year, I told my PCP that I was struggling with these memories. He encouraged me to contact the patient advocate at the hospital to inform them of my experience. I thought that was going to lead to some help.
I had two phone calls where I recounted part of my experience to someone from the hospital. After the second phone call is when I started putting things down on "paper" so I wouldn't have to go thru the story again and to make sure I included all the details.
Instead of help from the hospital, I received a written response from the patient advocate apologizing that my "experience did not meet my expectations". I'll email you a copy of that letter if you would like to see it.
@mir123 I will say that since I have begun putting a lot of what I call my "hospital memories" down on paper, it has been helpful.
I have been reading this forum for a couple of months now.
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2 ReactionsI had a heart attack at 55. I was traumatized by some things that happened too. Our local hospital put a heart pump in and transferred me to a university hospital for bypass. During preop a nurse accidentally pulled the pump out of place and caused another attack. After surgery 2days later I am convinced my nurse took my pain meds and disappeared for the rest of his shift. I was delusional so my concerns were ignored.
Months later I had severe depression that they said was pump head. I think I had ptsd and it has taken years to recover. It really helps to talk about it but it took me a year of ect and a lot of therapy. The physical part was easier. I’m glad they saved me now, there is so much to be thankful for but it was quite a journey!
Thanks for sharing yours. Focus on the positive and take care of yourself.
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3 Reactions@the3ameffect, I regret that your hospital treated your story only as a patient complaint, to review possible mistakes made and to ensure future improvements to patient care. However, this did not focus on YOUR needs. In reading your story, I see that you are reaching out for support to untangle the mental and physical impacts of being in ICU. Let's talk about that.
Increasingly, medical professionals recognize that an ICU experience has lasting effects for patients and families. As such, more and more hospitals offer support groups or counselling after ICU. Some people find it traumatic to return to the hospital settings. That's why we created this online space to connect with other patients.
I'm so glad that you decided to post after reading discussions here for a few months. It takes courage to write that first post. Like you said, putting the experience in writing can be helpful.
Have you considered talking about your experience with a professional therapist? Do you think that might be healing for you?
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4 Reactions@rebaheizer, experiencing delusions or hallucintating can be so scary. A patient should never be ignored when delusional.
It looks like you worked hard with a therapist and multiple approaches to help your recovery from the severe depression. Kudos to you for putting in that work.
@colleenyoung thanks to our wonderful world of insurance, I am forced to switch doctors in 2026. I have already made an appointment with my new pcp. Earliest appointment is in March. I'll discuss potential referrals at that point.
The disconnect between the care that I received while hospitalized and the tone deaf response from the hospital leadership is stark.
Thank you for hosting this space for discussion.
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2 Reactions@colleenyoung and when my existing pcp told me to contact the patient advocate at the hospital, I thought it was going to lead to getting some professional help. I explicitly told the person I talked to on the second phone call that I needed some help dealing with this.
@the3ameffect, I'm glad that you have an appointment with your PCP, albeit not for a while yet. We're here in the meantime. 🙂
Should you need professional help before then, you might consider reaching out to social work in the community or at the hospital. Social workers can help connect you with therapists.
@rebaheizer, when you recognized that you needed a therapist to talk about your experience, how did you get started?