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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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@janegigi

In 2014 I was became suddenly ill with H1N1 flu and double pneumonia and very high fever. My husband took me to the doctor who called an ambulance. I lost consciousness on the way to the hospital and I didn't wake up for four weeks. I was admitted to ICU critically ill. I was in a coma for four weeks, had a tracheostomy for about 6 weeks, had many complications including sepsis, pulmonary embolism, kidney failure and dialysis, blood transfusions, shocked twice, the organ donation people were called and my family were called to say goodbye to me. I was paralyzed in all four limbs, unknown reasons. Incontinent. My husband was asked to sign a DNR but he refused. I was 62 and had been previously healthy. I was a non smoker, non drinker. A hiker, an amateur wildlife photographer, Girl Scout volunteer, and had recently retired. I was hospitalized for 55 days, five weeks in ICU, then PCU which was pure terror (they were horrid), and then inpatient rehab. I had many kind nurses, but some unkind experiences and those are ones that haunt me. On ICU, the nurses allowed a strange man off the street in my room bc he said was a pastor (he wasn't). They didn't ask my family. I'm haunted that he was allowed in my room and violated my privacy. My first memory when I woke up from the coma was seeing myself naked from the waist down. He was a friend of friend but had no business in my room. He was not on the list approved by my family for visitors. I no longer speak to this friend. AND HE IS NOT A PASTOR!! I do not know him!! It's a violation of JCAHO!!! On ICU and PCU I had my commucation writing board taken away from me. I had a trache and couldn't speak and I was paralyzed and couldn't ring for the nurse. It was terrifying. No wonder I have PTSD or PICS. I'm convinced they would have killed me eventually. My daughter was livid and complained all the way to the VPs. One nurse was fired. The VPs were shocked when they saw how ill I was. The nurse told them I was being difficult and demanding, then they saw I couldn't speak and was paralyzed. I couldn't even roll over on my own. What shocks me today is that my doctors haven't even heard of PICS. I have a liberal arts degree. How can I know more about that than them ?! I'm about 85% recovered now. But they call me a liar. They try to tell me to forget about it. I've been seeing a therapist since my discharge. I have sleep issues, I don't want to alone. I can't sleep. I'm always back in ICU. I still cry. My life changed. My friends changed. Many of my friends turned their back on me after my discharge. It has taken me a long time to get my life back together. They expected me to jump back in and do my volunteer work. When I couldn't, I was excluded. That was so hurtful. It's true about finding out who your true friends are.

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Replies to "In 2014 I was became suddenly ill with H1N1 flu and double pneumonia and very high..."

@janegigi, I want to extend my Welcome to you. I am happy that you have found this topic on Mayo Clinic Connect. I do wish that there was something that could be done to turn back the clock so that you would not have had this experience. I don't understand how you were placed in such a situation. I have had several hospital experiences, and even in the best of circumstances, it can be a frightening and eerie place. I have also been in situations where there have been 'less than pleasant/qualified" caregivers and staff. I commend your daughter for calling this to the attention of a responsible staff member where it was addressed. I hope that you can find at least a small sense of gratitude that someone, in the future, will benefit from this. (Not much help, I know).
I have no experience with what you have gone thru, except one time when my son was not feeling confident about the night nurse, and so he decided to stay with me thru the night. I was also fortunate that my family was available afterwards to tell me what what they had observed during my times of confusion and this has helped me to sort out the blanks in my memory. I don't know what to say or to think about your situation, but I don't think that we can ever just forget things like that. I am glad to hear that you are making some improvement, and are pleased with your therapist and are seeing some results. It sounds like your husband is willing to stand up for you and be at your side. I hope that you will continue making progress, and begin to mingle with a new group of friends - who accept you for who you are.

You said that you had recently retired, so will you be able to revisit any of your original retirement plans? Do you think you can continue to look ahead to building some better memories and experiences for yourself and for your family?