Patients' and Families Shared ICU Experiences
Post Intensive Care Syndrome
December 30, 2016 Submission:
My name is Rob Rainer. At the time of my ICU experience I was 52 years old, a husband and father of 3 adult children. In 2015, I spent two consecutive months in ICUs, at two different New Hampshire hospitals, with a rare and often deadly strain of pneumonia. While a patient in these two ICUs, I was in a medically induced coma for approximately one month. I experienced horrific hallucinations during my ICU experience: (1) while in a coma, (2) while being weaned out of the coma and (2) after awakening.
TWO MONTHS IN THE ICU
While on a ventilator, I experienced what can best be described as an alternate reality. For example, one of my clear and vivid memories is that my father had bought the hospital with a dishonest business partner who was abusing the patients and trying to defraud my family. I was also convinced that I was being sexually molested by the nursing staff.
My hallucinations, which I still vividly recall, locked me in a strange alternative reality, it was so real—much different from a dream. Mainly because I rarely remember dreams and eventually forget them within a day or two.
TWO YEARS POST ICU, HALLUCINATIONS REMAIN VIVID
Almost two years after my ICU experience, I can recount in detail most of my hallucinations. Some of my hallucinations can be easily discarded, because they were ridiculous. However there are delusions that I think of as hybrid because they feel like experiences that really took place while I was in the ICU.
BLURRY LINE BETWEEN REALITY AND HALLUCINATIONS
I do not know if some of my hybrid memories are real or hallucinations. However my family tells me that most of these hybrid memories that include them, are not accurate. These hybrid memories remain difficult for me to resolve.
It is this blurry line between reality and delusions that is the most frustrating aspect of my ICU experience, because these hybrid memories can never be truly resolved.
DIFFICULTY LETTING GO OF HALLUCINATIONS
The first few months post ICU, I persiverated constantly about my hallucinations. Over time I have learned to stop focusing so intensely on my delusions and instead to focus on my good fortune in having survived a deadly disease that most people die from.
HEAVY PRICE PAID FOR SURVIVING ICU EXPERIENCE
But, ICU survival has come at a price to me and my family. My ICU experience has left me with a number of medical conditions including: scarred lungs (I have recently become oxygen dependent during physical exertion), hemi-paralysis to my diaphragm, cataracts, diabetes, some cognitive deficits, peripheral neuropathy in my feet, thyroid cancer (resulting in a thyroidectomy), muscle atrophy and hearing loss, among other problems.
PHYSICAL INJURY CAUSED DUE TO HALLUCINATIONS
I was told, but have no recollection, that I acted out when doctors began to wean me out of my coma. As a result, I had to be "strapped down" to keep me from ripping out my tubes and to "protect" nursing staff. Given that I had lost 60 pounds and was barely able to move due to muscle atrophy, I find this hard to accept as true.
Being strapped down as a result of my hallucinations caused injuries to my neck and shoulders. The injuries were caused by me fighting against the straps that held me down. Prior to my ICU stay, I suffered from no neck or shoulder pain.
Since my ICU stay, I have had eight epidural and transforaminal injections over a two year period of time. In October of 2016, I had a cervical anterior laminectomy and I am scheduled to have a cervical foraminotomy in January of 2017.
Thursday, December 14, 2017
THE MISSING HOLIDAY CARD
I’ve been writing and re-writing this post in my head for about the last 10 months. There is no simple way to start, so here it goes. I didn’t send out holiday cards last year. Before you gasp in shock, I think its time to fess up. I have not been super public about what happened with this missing holiday card, in fact what happened last December. I wasn’t ready to talk about it. I think I am now. Well, I was incredibly ill, a near death experience that landed me in the ICU with septic shock due to a suspected influenza and confirmed pneumonia.
Pictures I was going to use for the holiday card.
I had plans to make my holiday cards. I do it every year. And yes, its a bit of a waste of paper although I try to go with a recycled option. I love making my kids suffer in front of the camera while I snap away hoping to get a decent image. Truth be told, it was a Monday night and of course I had to resort to indoor pictures because it was early December and I had put off taking pictures. So I had them put on their elf PJs and we did some pictures in front of the Christmas Tree. For you camera nerds, I even used OCF, which made made it a bit harder as it was all on the fly. Later that night I even uploaded them.
The next day I woke up and had a temperature. I knew it wasn’t good as I rarely ever get a fever. I powered on with the day because, well, you have to right? By night it was 103. I finally found the Tyenol. I went in to the urgent care at my doctor’s office the next morning hoping to get Tamiflu and was swabbed for the flu (it was negative but those tests have high false negatives), lungs sounded clear. It didn’t feel right, though, but I was trusting and went home. I was popping Tylenol like candy (I can’t take Advil) and drinking herbal tea non-stop.
Pictures I was going to use for the holiday card.
By the next day, I hadn’t improved and that night I went to another Urgent Care. I had an X-ray done there and they determined it was pneumonia. A very aggressive pneumonia as the picture showed my whole right lung filled with fluid, and most of my left. I had no cough. Weird. I was sent to the local ER for culture and meds. Since I seem to be a special snowflake and am allergic to penicillin, I was put levofloxacin there and sent home. Big sigh of relief, I had meds, I’d be better. But I wasn’t. The next day, Friday, I couldn’t breathe and I couldn’t sleep because I couldn’t breathe. And the fever, it would not go down. My poor liver was hating the Tylenol for sure.
Saturday morning, I said to my husband, I have to go back to the ER. I feel terrible, I can’t breathe, this is not normal. So off we went. I don’t know what I was expecting would happen. Perhaps a change of antibiotics? I’m a bit fuzzy on the details of what transpired after I got to the ER. I remember getting a CT scan. I remember telling the doctor I didn’t want to be intubated for a ventilator. And I must have been an awful patient too because I am stubborn. They must have given my something because I was put on a ventilator later that day.
And then the fun started.
Being on a ventilator was the craziest experience I’ve ever had. I dreamed and hallucinated that I was on an airplane headed to the Caribbean. At one point in my hallucinations I dreamed I was scuba diving and living underwater and I was told I would have to live under water for a week. I would hear the nurses and doctors talk to me and I remember being frustrated I couldn’t respond. I also dreamed I was at the Westin Copley Plaza and I kept going up escalators. And the nurses were there too, talking to me. Finally I had a room at the Westin, all the way at the top, and I could see the top of the snow cone building by the Prudential. The sun was always setting and I was in bed and I desperately wanted to get out of bed. But my hands and feet were so heavy I couldn’t move them. I was trying to escape and I couldn’t. In my dreams I remember seeing a doctor and I kept asking for frozen yogurt.
And then I remember hearing my husband’s and sister’s voices telling me I could do it. In my dream we were atop an old historic hotel, much like the Culver Hotel and it was night and the stars were shining and they kept telling me I could make it to the roof. And there were planes flying overhead. I was told afterwards that my condition had gotten worse they very close to transferring me as I might need dialysis. I think this may have been the turning point, hearing my husband and sister.
Soon after I (think) woke up. I say think, because even when I did wake up it was hard to know what was reality and what was hallucinations. The doctors wanted me to sleep to recover, so sedation was a given. I woke up craving fresh fruit and water. I continued with crazy hallucinations. I think the brain pulls from random memories for hallucinations. For example, we had seen a praying mantis in the kitchen window at home just a few weeks earlier. Very cool right? I hallucinated that these were in my room, everywhere. I shiver at the thought. I also hallucinated that I came home and fulfilled ETSY and Amazon orders. In my dreams, right?
So when I was actually truly awake I tried to resume normal things like combing my hair, or sitting up. I was so swollen from all the IV fluids, I couldn’t move very well. Plus I had lost a lot of muscle I couldn’t even comb my own hair. It was SO frustrating. I thought, I can’t wait to go home. I have so much to do. Gifts to wrap. I was trying to do some shopping on my phone, thank goodness for the Amazon app, and even this task was hard. And then the physical therapists came to visit. I would not be going home. I would be going to a rehab hospital.
What? I couldn’t believe it but it made sense. I couldn’t even get up to go to the bathroom. And later at Spaulding I finally was able to weigh myself after clearing all the IV fluids I had lost almost 20 pounds, much of that muscle.
So off I went on a great ambulance ride right in the middle of rush hour traffic to Spaulding in Charlestown. What an amazing place. I had my own room and was pretty much bed bound at first. Slowly I learned how to use a wheel chair, then a walker, and left on crutches. Every day I had physical therapy in an amazing facility along side many individuals, be it amputations, accidents, surgery recoveries. It was humbling, a reminder that my illness was not permanent and I would recover. Plus I had so much to look forward to – the kids, my husband, family and friends.
Christmas was brought to me at Spaulding, celebrated in the conference room overlooking Boston Harbor. I came home for New Years for a few hours and happily went back. I say happily because I wasn’t ready to be ambulatory all the time. I came home a week later for more in home therapy and then out patient therapy through March. And then I lost about 80% of my hair. This illness just kept giving me so much. So if you see me now and have known me for year I have never sported a short hair cut. But I am now. Watch out for this year’s holiday card.
ICU experiences thankfully are rare in the general population. It is an experience one would rather bury in the back of the mind. But I think its bad to do so. These memories will come back, there will be a trigger and it won’t be pretty. I am sharing my story because I think awareness around ICU and post-ICU experiences is low. I do believe families, as helpful as they try to be, and even the medical community, do not know to recognize the hallucinations and trauma around the ICU. The doctors in ICU, and mine were amazing, are there to save your life. Sometimes the PTSD associated with it all is not addressed and patients are left not knowing if its normal to experience these feelings.
Just a few weeks ago I started with a cold and then a cough. I went to get checked out because you better believe I had some PTSD from last year’s experience. Well, we caught it early – an early pneumonia. I am pretty much all better now. You better believe the first thought that crossed my mind was I cannot lose my hair again. And while that was not the most devastating part of last year’s experience, it has been the biggest the reminder for me of what happened last year.
Wishing you all health and happiness during this holiday season and next year. If you’re on my mailing list, you better believe you will be getting a holiday card this year.
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