Patient Testimonials

Descriptions of ICU Stay, Delirium Experience, and Prolonged Post-Intensive Care Syndrome (PICS)

I have seen doctor after doctor and they look at me like I am nuts.

I had septic shock 4 years ago from urosepsis and I'm in my 50s. I am writing because I have never felt like myself again. I can't think clearly, my memory has suffered, I am fatigued like never before. Before sepsis I was active, hiking, biking, rock climbing, running and now I am sedentary with no sex drive (also new) and a great marriage plus 40 lbs. I have seen doctor after doctor and they look at me like I am nuts. They say I am depressed and put me on meds, menopause (which I already went through) and even chronic fatigue.

I just hope one day I will be normal again, and this is temporary.

I was hospitalized for 9 days with respiratory problems. In the ER and ICU, I could not remember 8 family members that were there. I also told the medical staff to call “Rick” (my husband who passed away 11 years ago). Once hospitalized, one night, I believed that I was in Florida and people outside were trying to break in. I tried to get up and call 911, but my daughter stopped me.

I nearly ended my life a few times.

When I returned to work, the work I did before seemed foreign and unfamiliar. I became isolated and excluded from everyone. No one wanted to be around me. My wife of more than 36 years told me that I was just “feeling sorry” for myself, and I just needed to get on with my life. I nearly ended my life a few times. My family believed that I was just faking it all.

I felt better and returned to work but was fired 10 weeks later.

It's been two years and I'm still trying to sort out what was real and what wasn't. I still think about it several times a week and continue to ask questions of my family. I have a compelling need to know what happened to me. The final diagnosis was ARDS and Encephalopathy, however; they never determined the cause.

I was so, SO consumed by anxiety.

I don't remember most of the 40+ days I spent fighting ARDS in the ICU. I do remember bits, like snapshots – my Dad's warm wave and greeting when he arrived; I remember my Mom and sister lovingly giving me a bed-bath; I remember Dr. Wheeler and others talking. I also remember being asked questions over and over and answering by squeezing the questioner's hand. And I remember having my chest tube removed.

My physical recovery once I was home moved forward very quickly, but inside I was in meltdown.

As birthdays go, this one was absolute rubbish. It was 8 o'clock on a May evening in 2007, and where I should have been enjoying an evening out with my husband and friends, here I was sitting in A & E with a broken nose, the result of the most mundane of domestic accidents ,falling over some washing while I was completely sober.

(I) consider myself all well except that I can’t remember to take my medications.

About my delirium memories from the ICU, I have had few. The time I spent seems like it was in a huge, empty gray space, sort of like a monstrous underground parking garage with no cars, only me, floating or seeming to float, on something. Every once in a while I would get to an edge of something horrible and once I remember I thought, "if I just let go, then this horror will be over." But I couldn't, even though I remember telling Ben at one time, "I'm ready to die." And I remember him saying, "Oh, Mama, don't say that; don't say that!" When I try to write about that time (and I have tried over and over), words just won't come and in my line of writing, personal essays, if it doesn't just come gushing out, I have to stop. And that's where I am now. I just cannot write about it.

No one took me seriously.

Hello, I am e-mailing you after having read a NY Times article dated 10/17/07 on ICU Delirium. I am near tears as I sit at my desk and type this. I was intubated and admitted to the ICU with severe sepsis, ARDS, and a ruptured bowel following a surgical injury after a laparoscopic outpatient procedure.

Oh well, I survived Hell on earth, that’s for sure.

Distorted Perceptions/Dreams:I was put in this tiny room and inspected by a doctor. A nurse came in and I thought she was one of the ambulance drivers who’d changed her wig . She was doing something to me, and she was a mean woman. I did have a dream I can remember part of it. Across from Mechanicsville Post Office there was a washer and dryer for sale by people my children knew from baseball. No idea where that dream came from since my dryer was replaced in 2012. I just had to buy those appliances in my dream. When I woke up next, the nurse was someone from UMMS. She refused to stay with me after I begged her not to leave me.

It has been 10 months, and I just keep waiting for it to straighten itself out.

“Doctor, she’s not all there. The wit, the comprehension, the concentration. It’s all haphazard at best. To most, it is unrecognizable. The best way to describe it is mental disorganization, like there is a connection missing or a synapse not firing. It has been 10 months, and I just keep waiting for it to straighten itself out. Is this it?”

I could not read, concentrate on TV or even complete my application for my next round of family practice boards.

Thanks for your great paper. I am a family doctor with over 30 years of experience. I have seen my share of very sick people. I personally was unaware of post septic cognitive deficits until I had prolonged (greater than days) sepsis from an undiscovered prostate abscess. After everything was under control I went home for six weeks of IV antibiotics and I could not read, concentrate on TV or even complete my application for my next round of family practice boards. The deficit was quite severe and lasted about two months with no permanent residual (I think). My case reinforces the importance of your observations.

To me, it was like the slow rebooting of a computer.

I relate because five years ago I had emergency surgery at Centennial to repair an aortic dissection, and underwent the drug induced coma after being placed in deep hypothermia following cardiac arrest. I thought your conclusion that you were about as good as you were going to get after the one year time period was exactly right. To me, it was like the slow rebooting of a computer. My IQ prior to the dissection had been around 132, but, after the dissection, it was way down, which I contributed to my medications.

I do not believe in alien abductions.

I was stunned to see such a large group of medical clinicians openly dedicated toward examination of long-stay ICU delirium as a medical phenomenon which warrants study and development of treatment protocols during and especially AFTER the ICU patient has left the hospital. As some of your material on ICU delirium suggests, the experience of having been a 'chronic' delirious ICU patient was terrifying in the extreme. But for me has been exceeded by the ongoing ordeal of facing friends - close friends, along with spouses and siblings, who have not even the slightest clue that such medical conditions exist and that the long term repercussions are real and ongoing.

I actually seen body bags with my children's names on them.

I had numerous dreams but the one that I think about the most is one that my children were being forced to run drugs for smugglers and it was based by them swimming under water for an extended period of time holding there breathe to get into this underground mall after hours and they were locked up for training by these drug dealers. I actually seen body bags with my children's names on them. I tried to help them and tried to communicate this but with the tracheostomy tube I was unable to do this. My wife told me later that I tried to pull my tracheostomy out one night and I believe that this is the same night that I recall the body bags. The next day I was strapped down to my bed for safety reasons and I had the same dream the next night and I was dreaming that I got caught trying to help my kids and was tied to a bed so I couldn't help them. One of my nurses was the girlfriend of the main drug dealer who was in charge of getting all these kids to run drugs for him.

I was diagnosed with ICU Syndrome while in the ICU, but they said it would go away!!

It didn't go away I have suffered memory loss, a great deal of problems and would like answers! I was in a coma and now have PTSD on top of it all!! I know you do lots of research and I'm willing to help if it means an answer. I just want my Life Back!!

Reflections On Being a Doctor – What I Learn from Patients

Wes Ely, MD, MPH

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