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Patient Testimonials

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.

However, one of my patients is being worked up in immunology and has a story very similar to mine, she can't get back to where she was before she had sepsis which is what started my research. I thought maybe I am not the only one. Then I stumbled upon post sepsis syndrome.

I am writing to you for help. This has effected every aspect of my life, I even had to leave my job as an ICU nurse because it was wearing me out – I couldn't handle it which kills me. I am that nurse you gave your hard patients to, the difficult families, complicated patients, hard traumas. Not anymore. I just can't handle it.

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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.

My friend told me that I would stare at the venetian blinds and say, “I am watching a very good movie”. When a doctor or nurse would come into the room and ask where that I thought that I was, I would read off the white board which included the date, day of the week, location, and nurse’s name.

After I went home, someone slept with me for the first two weeks. I also wrote a check for $31 but documented in my checkbook that I had written a check for $98.87. I also forgot that my sister had passed away over a year ago. I could not use the TV remote, microwave, or air conditioner/heater. I tried to make macaroni and cheese and ruined it. I left boiling water on the stove while I fell asleep for 3 hours. I drove my car at night and had trouble finding my way home.

I need answers. I found your study on Google. Thanks for that. I just hope one day I will be normal again, and this is temporary.

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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.

Then after five years of this hell, Oct 2 2013 CBS News ran a report about people just like me. From that report I found your website. I cried for a long time when I read it, finally someone who knows what my past five years has been like. The things you do that you have no control over. I sent your website to my family and it has changed my wife’s opinion about me. There is something about knowing that I am not alone and it isn’t my fault that makes a difference. For the first time in the past five years, I believe I have a future. Thank you.

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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 on a ventilator and heavily sedated for nine days. I experienced what I call a prolonged nightmare. The theme: I was in an experimental hospital to learn what it's like to be completely dependent on someone else. I am a nurse so figured it was my punishment. The nightmare seemed to go on and on with different twists and turns.

After I was extubated and sedation was discontinued, I continued to have paranoid delusions about the nurses wanting to harm me. I repeatedly told my family that when I was dead, the nurses were going to put my body in a large trash can at the foot of my bed. I was obsessed about it and no one could tell me anything to the contrary. I was hallucinating at times especially at night when I was alone. I saw outlines of skeletons on the wall, heard strange sounds, etc. I believed I had been moved into various parts of the hospital, including the basement. I misinterpreted environmental cues and attempts to help me were interpreted as meanness. At discharge, the Neuropsychological Evaluation (NP) revealed significant deficits. I have a history of depression which was also present at discharge.

I was never told by anyone what to expect. When I reported cognitive concerns to my neurologist at the follow-up visit he gave me a Mini-Mental which I could have passed in my sleep.

After 5 months I felt better and returned to work but was fired 10 weeks later. I was devastated because I am a successful professional and had never lost a job. At the same time, it didn't surprise me because I was struggling terribly. I couldn't organize my work; committed many errors in documentation; frequently lost things; forgot meetings, and did not manage my time well. I tried to hide it and compensate but to no avail. I also fatigued easily. At the follow-up NP evaluation four months after discharge (prior to returning to work), the report stated that I was "back to baseline," however; the written report noted numerous deficiencies. After I lost my job I called the psychologist who stated it was "semantics". I appealed to my insurance for a second NP evaluation by the psychologist at the hospital. It revealed deficits in attention and executive function. I experienced major depression which didn't resolve for 18 months.

I'm hoping to return to work in the near future, at least part-time but I'm very nervous about it. I think there's been improvement but I still experience difficulty in attention and organization and still lose things on a regular basis. I at least need to try.

Hearing about your research on NPR has been very validating for me. I'll continue to follow your research, and in particular any new developments regarding treatment or remedy.

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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.

Unfortunately, I also remember being so overwhelmed by anxiety that my feet were in almost constant motion, back and forth, back and forth. My family began to recognize that when I shook my hands like that with my fingers splayed it meant that I wanted medication to help me tolerate the anxiety. They couldn't always give me anything.

Part of the time, I thought I was being restrained by elastic bands that held me down so that I couldn't move. The walls around me looked like I was being held in a multi-level pagoda. In my mind, I was plotting my escape to home, thinking I could pick at the threads of the imagined sewn elastic restraints and set myself free. Randomly I saw small Asian people who wouldn't look at me and I saw a black cat and a black pot-bellied pig. All the while, I was so, SO consumed by anxiety. Just remembering brings back shadows of anxiety.

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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.

Two weeks later I was summoned for day surgery to sort the nose out. My conversation with a porter about the next day's FA Cup final, while making my way down to theatre, is the last memory I have before being plunged into the most terrifying experience of my life.

The next occasion when I had any perception of time was 12 days later, when I found myself being stared at by two middle aged men in dark suits and bright ties. One was busily explaining to me that I was in the Intensive Care Unit and that I was quite safe. However, I knew better. I knew they were lying. For me, the reason I was in a bed, on a ventilator, hardly able to move, was that I had been drugged and kidnapped. It had all started in Portugal; at least I thought it was Portugal, where I'd been abducted. At some point I'd managed to escape but was re-captured and taken to a hospital, a few miles from my home.

However, I knew better. I knew they were lying. For me, the reason I was in a bed, on a ventilator, hardly able to move, was that I had been drugged and kidnapped. It had all started in Portugal; at least I thought it was Portugal, where I'd been abducted.

I knew that I must have done something wrong, to be held with no hope of escape, but I had no idea what it was. I'd tried on several occasions to pull the tube out of my mouth, but had always been instantly plunged back into darkness. It never crossed my mind that there might have been a medical reason for my predicament, and I had no knowledge that severe aspiration pneumonia following my routine surgery had landed me in ICU and was putting my family through hell.

What I did know with certainty though was that I would die. One particular doctor would visit me every time I started to wake. He always wore the same clothes and would always speak slowly and deliberately. You've been dying to know what that sign on the wall says, haven't you?, he asked one day. He was right; I had wondered what it said but the problem was I could see two of everything and objects and people were frequently blurred so I hadn't been able to read it. I'll tell you what it says, he continued. It says moron. We put it there so every time you open your eyes it's the first thing you see; so that for every minute of every day you know exactly what you are. Unfortunately I'm not allowed to turn your ventilator off, but I want you out of here, and you will leave soon, in a body bag. You're not going to live, but just remember every time you open your eyes you will see exactly what we think of you moron. From then on, that sign was the only thing I could see that wasn't blurred.

The rest of my stay in ICU was filled with more incidents of despair, humiliation and terror. I saw a patient stabbed to death by his wife, and two people committing suicide. I witnessed arguments, in my mind all caused by me, and the pain I felt as my lungs started to recover was all part of a plan to give me pain inducing drugs “ in fact I had seen doctors laughing about it.

The day after I was extubated I found myself in the High Dependency Unit, where the sheer terror of the execution attempts began. Initially I thought I was in the morgue as I was lying flat and was extremely cold. There was a plain clothes policeman watching me because I'd witnessed a murder on ICU. Someone spoke to me I can control your mind they said, and then proceeded to demonstrate they had power over me by causing me pain and by interrupting my supply of oxygen at will. The following morning a tall and distinguished looking man sat down and explained to me that I had Pershing's Disease. This was a rare congenital heart condition that can lie dormant for many years. Once a sufferer shows symptoms, however, their life expectancy is less than a year. In my mind I might as well just die where I was, and the doctor encouraged me to do exactly that.

Pershing's Disease of course, does not exist, but just like everything else that happened to me, the hallucination I had where It was explained was so convincing that I was still trying to find evidence of its existence weeks later.

I was put into a side room in HDU, allegedly for infection control, but I knew it was for my execution. I'd heard the nurses talk about CTO, which was a Compulsory Termination Order, and one had been issued for me. As the blinds were pulled down over the room's windows and door, smoke appeared through every vent. A voice told me it was cyanide and I would die more quickly if I relaxed and inhaled it. I watched it creep closer paralyzed with terror, and all I could think about was that I would never see my family again.

Having somehow survived, the execution attempts continued. They included suffocation, poisoning, drug overdoses and being forced to hold my breath until 4 lights went out on my monitor. By the time I moved down to a respiratory ward I had given up trying to convince my family that the hospital staff were trying to kill me. I still had no idea of what was wrong with me, and when my husband explained, I was sure that all my problems had been induced and had not simply happened. It was then that I decided to keep quiet about my views as no-one believed me or was prepared to help me, so I planned my escape alone. By this time I could take some of my medications orally, so this gave me some element of control, as I would wait until the nurse left the room, then would throw the pills containing poison into the medical waste. I ate nothing at mealtimes, but instead stole pieces of cutlery that would help me pry my window open. I was utterly oblivious to the fact that I was four floors up. The hallucinations had stopped by now but were replace by paranoia and deviousness. The day I planned to leave via the window was the day I was discharged. That might seem lucky, but I spent the next few months wishing that I had died that day.

I ate nothing at mealtimes, but instead stole pieces of cutlery that would help me pry my window open. I was utterly oblivious to the fact that I was four floors up.

My physical recovery once I was home moved forward very quickly, but inside I was in meltdown. I couldn't tell anyone how I really felt “ my family and friends had been through so much already. My delirium and its consequences caused me to believe that I was still being poisoned, even after leaving hospital, so I stopped taking my medication. What do I wish had been different for me? Well, when I received a copy of my medical notes following a suggestion that it would help me to make some sense of what had happened, I read through the hundreds of pages that comprised a file 6 inches thick. Only once did I find a relevant reference. It was one about me being severely paranoid, and that note was made by a physiotherapist. Although I have no doubts whatsoever that the care I received was of the highest order, I still feel today that my delirium was seen as an acceptable side effect of my illness and treatment. Months later, during my ICU follow-up appointment, they were not at all surprised that I had suffered prolonged and extreme delirium; in fact they appeared to know I had. To them it was normal. To me it was anything but.

Two years have now passed since my experience of delirium. In that time I've been able to make sense of at least some of what happened to me. My mother reminded me that my belief I'd been kidnapped could well have been my brain confusing my situation with something that had been constantly in the news. Unfortunately, I'd shared my birthday, the day of my accident, with the day that Madeleine McCann was taken from her family's holiday apartment in Portugal, and the tragedy had been at the top of every news bulletin leading up to the day of my surgery.

I know too that my almost total lack of memory for the routine events you would expect to experience on a hospital ward and which would have reassured me about where I was and what was happening, stopped me from challenging my warped and terrifying perception of the world. Whatever the future holds though, I'm never doing the washing on my birthday again.

"Perspective from LH" courtesy of Dr. Valerie Page, Watford Hospital, United Kingdom

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(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.

One friend, a retired surgeon, told me I probably would see snakes climbing down the wall, or think one item is something horrible. Nothing like that has happened to me. I do remember thinking if I could only just bite through whatever that is in my throat, then I could breathe. I couldn't even swallow, that was one of the worst things. And not being able to breathe or to talk.

...once I remember I thought, "if I just let go, then this horror will be over."

Even though I was only in one hospital the whole time, it seems to me I was in five different hospitals and one of them was on a train and one was in an airplane.

I survived and that is the main thing. And I am so grateful to God that I survived and am now off all oxygen and consider myself all well except that I can't remember to take my medications.

My words just won't come. I did lose for some weeks a lot of my speaking words. For instance, when I went to say the cancer was negative, I said: the cancer was naive.

My brain rehabilitation has been the word game Scrabble. I beat my best friend at Scrabble last Sunday. She probably won't tell anyone, as she usually wins. We are so very competitive and have great and grand games now, but it took a long while to get that back.

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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.

I was intubated and in the ICU for nearly 2 weeks. During that time I suffered severe delirium. The nurses told my family what was going on. My family in turn told me. I have been a social worker in health care for nearly 25 years. When I heard the term ICU delirium, I began refusing the sedating meds which I was offered on a regular basis. The absence of the drugs helped.

When I brought these mentation problems up to my doctors (and to the surgeon who I worked for at the time) I was told it was 'normal aging' or related to menopause. No one took me seriously.

After being discharged home from a 29 day hospital stay, I noticed that I was having difficulty with concentration, word recall, ordering my thoughts, processing information, endurance and balance. All of these continue to be issues today. I have returned to work and have been able to continue to function independently. However, I just started another Masters program. I can do all of the necessary work, but during class discussions, when others can easily process the information and participate, it seems as though everything is stuck for me. I cannot process what's going on in class, and make insightful, relevant comments. The best I can do is to restate what has already been presented. I simply have a real problem organizing and pulling up data in my head.

I also had to have a hysterectomy as a result of my injuries. When I brought these mentation problems up to my doctors (and to the surgeon who I worked for at the time) I was told it was 'normal aging' or related to menopause. No one took me seriously.

I am very, very interested in participating in your research in some way. Working with you in some way, somehow gives my whole horrible experience meaning. Otherwise, it's as though I suffered all of this horror for nothing. I am also interested in making contact with others who have had similar experiences.

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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.

Impact on Functioning:
Oh well, I survived Hell on earth, that’s for sure. That’s life. I worked very hard to get back on my feet because I didn’t want to have to ask much of people. I mean I couldn’t open bottles or clean litter boxes. But, I did manage to cook soups, get my cup of liquids, and do laundry. I think that is why I got rid of the walker and cane so fast—walking back and forth with food, drink, and laundry.

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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 do not believe in alien abductions. However, the terrified fear that such alleged abducts speak of seems not at all unlike the way I feel about my ICU experiences. The difference between alien abducts and delirious ICU survivors is that the former have the benefit of a widespread network of support groups. ICU survivors seem not to receive support or belief or sympathy that they have any medical condition at all now that they have allegedly recovered (aka not died). You must, in addition to the research you do, design a public education program which at the very least frees chronic ICU survivors with the feeling that at least the occasional person OR PHYSICIAN has a clue as to why something should continue to feel so wrong for so long a time.

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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

Dr. Wes Ely, MD, MPH


Last Stand

Pulse

But now, listening to the respirator pumping air into Jessa's lungs and felt her intense cobalt gaze on me, I saw one thing clearly: any concerns about antibiotics or nutrition took second place to a larger question.

"What do we know of Jessa's wishes about staying on a ventilator, now and in the coming weeks and months?" I asked the team when we stepped outside the room to confer.

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What I Learned From a Dying Patient

The Wall Street Journal

The literature shows that most patients want to be asked about their spiritual beliefs or nonbeliefs, and that many think it rude if health-care professionals don’t consider this important aspect of their well-being.

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Love, Faith and the Lost Battalion

The Wall Street Journal

In the hospital our team of white coats swooped in to “save” Mr. Callis. Yet we later learned from what he told us that his real rescue, the one that mattered most, had occurred on a much higher plane, through a sacramental promise made many decades earlier.

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Kaleidoscope

American College of Physicians

Recently after rounds, I looked through the kaleidoscope. Immediately, I again saw flashes of color and light built on endless combinations of personal values, faiths, family structures, races, and life choices.

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Cyanosis

The Journal of the American Medical Association

Marcus' first words to me set the tone for our visit: “Listen, Dr Ely, I’m blue ’cause I was born with holes in my heart, and I’ve had one foot in a casket since I was a lil’ boy. Many ‘all-knowin’ ’ doctors have told me I’m ’bout to die. They’ve all been wrong so far, but now at 32, I’m wondrin’.”

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The Leopard-Skin Bra

The Journal of the American Medical Association

Mutton chops and a bushy handlebar mustache. An indomitable, ultracool personality. An endearing smile that no one could resist. Dyspnea on exertion, orthopnea, and 2+ edema to his calves from a disease that was bringing death closer and closer. This blessed and cursed man was Charlie South.

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Medical Error: The Personal Cost

Dr. Alison S. Clay

In July 2005, Dr. Alison Clay was treated for an acute systemic reaction to a bee sting at the medical center where she worked. The encounter was not routine, shaking Alison’s confidence in hospital medicine and causing her to question the very health care system that had trained her.

Read the article