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Post Intensive Care Syndrome
Former ICU Patients and Their Family Members Share Their ICU Experiences
Sharing your ICU experience will help Critical Care Professionals improve the experiences of future ICU patients and their families
Please Share Your Story
We have found that it is very helpful for former ICU patients and their family members to share their experiences with other former ICU patients.
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Surviving the ICU is a subject that is only truly understood by former ICU patients as well as the family members of former ICU patients.
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We request that you please share your ICU experience by completing the above form and that you read the shared experiences of others.
Read Patients' ICU Experiences Submitted to AICU
The Missing Holiday Card
My near death experience landed me in the ICU, the culprit septic shock secondary to pneumonia
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.
I was in the ICU last April 2016 for a sever reaction to Ramipril. I had tongue swelling and was in the ICU for 4 days. According to my wife, I was having hallucinations which lasted even I came home for a few days.
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Links to Videos of Other Patients' ICU Experiences
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The Society of Critical Care Medicine has developed several videos featuring interviews with caregivers and ICU survivors. These videos also are available at www.youtube.com/SCCM500.
A Physician's Experience as an ICU Patient
Published on Feb 19, 2014
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Alison Clay, MD, shares her experience as an ICU patient and survivor during the Society of Critical Care Medicine's 43rd Critical Care Congress. Dr. Clay shared her story as part of the ICU Liberation initiative, which seeks to disseminate information about pain, agitation, delirium and mobility to critical care professionals.
How to improving care after ICU discharge
Published on Mar 6, 2014
Patients share their perspectives on life after the intensive care unit (ICU). Post-intensive care syndrome, or PICS, is made up of health problems that remain after critical illness. They are present when the patient is in the ICU and may persist after the patient returns home. These problems can involve the patient's body, thoughts, feelings, or mind and may affect the family. PICS may show up as an easily noticed drawn-out muscle weakness, known as ICU-acquired weakness; as problems with thinking and judgment, called cognitive (brain) dysfunction; and as other mental health problems.
What advice you have for other ICU survivors?
Published on Mar 6, 2014
Patients share their perspectives on life after the intensive care unit (ICU). Post-intensive care syndrome, or PICS, is made up of health problems that remain after critical illness. They are present when the patient is in the ICU and may persist after the patient returns home. These problems can involve the patient's body, thoughts, feelings, or mind and may affect the family. PICS may show up as an easily noticed drawn-out muscle weakness, known as ICU-acquired weakness; as problems with thinking and judgment, called cognitive (brain) dysfunction; and as other mental health problems.
What advice would you give ICU staff?
Published on Mar 6, 2014
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Patients share their perspectives on life after the intensive care unit (ICU). Post-intensive care syndrome, or PICS, is made up of health problems that remain after critical illness. They are present when the patient is in the ICU and may persist after the patient returns home. These problems can involve the patient's body, thoughts, feelings, or mind and may affect the family. PICS may show up as an easily noticed drawn-out muscle weakness, known as ICU-acquired weakness; as problems with thinking and judgment, called cognitive (brain) dysfunction; and as other mental health problems.
What was your ICU experience?
Published on Mar 6, 2014
Patients share their perspectives on life after the intensive care unit (ICU). Post-intensive care syndrome, or PICS, is made up of health problems that remain after critical illness. They are present when the patient is in the ICU and may persist after the patient returns home. These problems can involve the patient's body, thoughts, feelings, or mind and may affect the family. PICS may show up as an easily noticed drawn-out muscle weakness, known as ICU-acquired weakness; as problems with thinking and judgment, called cognitive (brain) dysfunction; and as other mental health problems.
The family, however, is acutely aware of the massive number of things happening and yet at the same time confused by the steps being taken by the ICU team to monitor and care for their loved one.
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How Does PICS Affect Family?
Critical illness is a family crisis. Feeling worried and confused can cause family members to stop tending to their own health. The care team may ask the family to make decisions about important, sometimes overwhelming matters. Because of this, 30% of family members may experience their own mental health problems, such as depression, anxiety, and PTSD.
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How Can Family Lower Their Chances of Developing PICS?
First and foremost, if you are a family member, take care of yourself. This cannot be stressed enough. Meeting your critically ill family member’s needs is a major part of care, but your needs are just as important. If you are well, you have the physical and emotional strength to support your family member and feel good about it. Eat well, get as much rest as possible, exercise, and seek support. The hospital has social workers, case managers, and pastoral caregivers who can help.
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Take time to understand your family member’s illness and treatment options. Having this information will help you make decisions, feel confident about the decisions you make, and reduce stress. Ask questions, ask to meet with the care team, and keep a journal. Review the journal with a member of the care team whom you trust to make sense of what has happened and how you are responding to it. These actions can help you and the care team recognizes and respect your family member’s wishes, values, and preferences as much as possible.
Participating inpatient care is another way to support your family member and reduce stress. The bedside staff can suggest activities for those who want to be involved.