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Post-Intensive Care Syndrome (PICS) - Let's talk

Intensive Care (ICU) | Last Active: Sep 16 7:52pm | Replies (609)

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@baceman

Wow... a year ago I suddenly developed severe nec pain and lost all feeling in my left arm. Saw an orthoneurosurgeon ad was found that I have a disease that turned my spinal Ligament to bone forcing the discs to crush my spinal cord.

Surgery was scheduled for the following week but I never lasted that long. The pain was so great and the condition so bad that I lost function of my left arm and leg and that was the last thing I remembered for a month. Wife took me to the ER and they did surgery the same night... for six hours.

After surgery, I started to bleed after the removed the breathing to to the point where they couldn't put the tube back in and they performed an emergency tracheotomy to save my life. During that, they ended up resuscitating me for the first time. Off to the ICU and now am totally paralyzed. Two days later I start bleeding again and theybtrsucitate me for the second time.

I was in the ICU for 3 1/2 weeks. Don't remember any of it. My issue is I am a clinician who practiced in the ICU so when I came to, it all hit me. I cried for weeks,

I am a year out and still partially paralyzed on my left side. I can't stop talking about my issues to people. Even perfect strangers. I cry at the drop of a hat. I went back to work full time only to find that I cannot physically do the work due to the pain.

My wife just wants me to stop talking about it but I am consumed with it. I know that I have t fully dealt with it. Now I'm staring down the barrel of having to have another surgery and I am scared to death (pardon the pun). Can't talk to my wife about it and my family and friends are tired of me talking about it.

I am seeing a counselor (just started). The ring that bothers me the most is this gap in time and memory. And the residual paralysis and pain is t helping. I'm afraid of losing my job and the change all of this means in our lifestyle. Scared only scratches the surface... the nightmares have pretty much subsided and I am filling in the gap in time with fantasy. I just make it up. I don't know what else to say...

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Replies to "Wow... a year ago I suddenly developed severe nec pain and lost all feeling in my..."

@baceman, Welcome to Mayo Connect. You are in the company of others who are experiencing similar emotions. Here on Connect, we share our experiences, and we learn from each other. We support each other and offer hope. And we cry, too.
I have experienced the memory gaps from my time in ICU while critically ill. My family and loved ones are reluctant to discuss the events because , I believe, it is too painful for them. I think that while I was the patient, I was also 'out of it' so I was not really aware of much. On the other hand, they were very much there 24/7. They were the ones responsible for the difficult decisions, and the stressful waiting.

I hope that you and your counselor will be successful in achieving some relief for your fears and nightmares. I hop that you will be able to move toward a more normal life.
Sending you a hug and peace and strength,
Rosemary

It is good you are talking to someone about it. I have not been through that much talking to others to much the entire situation makes everyone avoid they are not trained to help you. Best to talk to counselor or therapist to help you work through it as long as
they share the Christian faith. You need someone to allow you to cry, I did have my surgery and you have been
through a great deal of fighting for your life traumatic situations. You need to talk and its o.k. to get it out and
know that this is a normal reaction to what you have experienced.
Elizabeth

@baceman, thank you for being here and starting your conversation with us. Your critical illness and the events surrounding all of it have definitely been life-changing for you. We have started a page for post-intensive care syndrome (PICS) with information updated often which you can find here: https://connect.mayoclinic.org/page/pics/#/!tab=newsfeed. I think you might find some very helpful information posted. It is so normal to be very emotional following the intense experiences you have gone through. Seeing somebody for this can be an essential part of recovery. If needed, you can bring information from our Page with you for these conversations as it is always helpful for other professionals to have some background information on PICS. Please continue to follow with us on this forum. We also have an in person support group available if you are local in Rochester, MN. More information on that can be found here: https://connect.mayoclinic.org/page/pics/#/!tab=resources-50

@baceman a year might sound like a lot of time, but when it comes to recovery from critical illness it really is only a minute in a lifetime. It might be helpful for you to able to connect with others with similar experiences. Have you tried a peer support group or considered attending one?

Unfortunately I can relate to your story. I had an operation and ended up on a ventilator in the ICU. Spent 33 days there. This was 11 years ago and still haunts me. Possibly because I had several operations since and still worry it could happen again.
I have been going to therapy the last year and it has really helped. I feel like people that do not go through do not get it and it used to frustrate me. Now I try and control what I can. Any advice is appreciated

@rsinger22 There isn't any set time limit on recovering from critical illness. Especially when you have repeat health issues that bring you right back to the worst times. A physician who I work closely with likes to refer to post-intensive care syndrome as "PTSD of the ICU". Having to undergo multiple follow-up procedures and/or surgeries can definitely cause anxiety and worry. You mention that you have been going to therapy. What do you find to be the most helpful from therapy?

@andreab I enjoy the ability to just speak my feelings and how I feel about different situations. There are many instances in my day where my health affects me but others have no idea. The therapist gives me a forum to express my thoughts and feelings in a non judged atmosphere

@elizabethbryant Hi Elizabeth, I just realized that it has been a while since we heard from you. How are you doing? Teresa