First of all I must tell you that most of what I know about was told to me from my husband, sons and friends. I was in such back pain I took a pain med that I had never taken before. It was Dilodid (sp). I was allergic to it and had a very bad reaction. To make a long story short, I thought my little dog was being attacked in our back yard. I flew out of the sliding door and forgetting the steps leading down to the patio I landed on the cement. I broke 3 ribs and pelvis. My elbow looked like hamburger. I only remember the fire dept. getting me out to the ambulance. From there I know nothing.
I was in ICU for 6 weeks, then 2 weeks on a regular nursing floor. That was 13 months ago. I was on a ventilator on and off for for several weeks. When I was off it I had a tracheotomy tube. I still have it and will for the rest of my life. Luckily I am in the 20% that made it out of the hospital. Most don't. They stopped counting the times I was code blue, I think that is the right term for not breathing. It was at least 12 different times I was told. I am always sore in my back and neck, all of my muscles feel useless and sore, I still have that and headaches, dizziness, I wobble when I walk, hopelessness, my short term memory is gone, I can not form sentences and have a really hard time thinking of the correct words to say in a conversation. At first I used a wheel chair, then a walker and now I use a cane. I am extremely exhausted all the time, I cannot walk to the bathroom from the kitchen without gasping for air. If I try to do "something, anything" I am down for the count for a few days. I didn't know anything about this syndrome until yesterday. I happen to have gone in to see the doctor that took care of me in the ICU. He just happened to read something about it. I'm not sure any of this will help but it sure made me feel better for having found this site to know I'm not alone.
I ended up in the ICU from a horrible reaction to a pain med the doctor prescribed for me. I have been suffering from severe back pain for years. I am now allergic to ALL pain meds. It makes it rather difficult to get through surgeries. Oh well, carry on is my motto.
That's all I can think of at the present. I ended up with a trachea that after speaking with the doctors will remain for life. I am hoping to speak with "someone" at the hospital to set up or produce a pamphlet to give to those who are subjected to this syndrome. I think it would be a more proactive way to deal with this than to let the patient or family have to endure the side effects of the ICU and having to be intabated.
I haven't addressed this to anyone exclusively. From reading all the stories that we've had I think we all have had a pretty hard time. I know none of us deserved it, wanted it, didn't know what to do about it, etc. It just keeps on giving once you've got it. I will have been out of the hospital for a year and have not returned to myself at all. I am on depression meds. of all kinds and it doesn't feel like it is working. I wish you all better days.