Post-Intensive Care Syndrome (PICS) - Let's talk
Have you heard of Post-Intensive Care Syndrome? Sometimes it's called post ICU syndrome or PICS. PICS is defined as new or worse health problems after critical illness. These problems can affect your mind, body, thoughts, and/or feelings.
On Connect we would like to bring together people who have been affected by critical illness, and hopefully lighten the burden you bear. Patients and family members welcome.
Grab a cup of tea, or beverage of your choice, and let's chat. Why not start by introducing yourself?
Interested in more discussions like this? Go to the Intensive Care (ICU) Support Group.
@mbau, what were you able to relate most to on this forum? Has there been any resource that you have found that has helped you with your difficulties?
@baceman a year might sound like a lot of time, but when it comes to recovery from critical illness it really is only a minute in a lifetime. It might be helpful for you to able to connect with others with similar experiences. Have you tried a peer support group or considered attending one?
@mouse355 I want to make sure you know you are not alone with what you are experiencing following everything you've been through. I've recently posted on that exact topic at: https://connect.mayoclinic.org/discussion/am-i-alone-in-this/. It can also be very helpful to meet others who share similar stories. Have you ever considered attending a peer support group to help you work through some of this?
All, as humbled as I am with the stories of pain and loss, I am even more moved by the hope and resilience embedded within your experiences. We are attempting to get a PICS support group started where folks can share their experience, strength and hope with each other in person. We will be meeting at The Pantry at Kutzky Market (Forager), 1005 6th St NW, Rochester, MN, the third Monday of each month from 2-3 pm. Coffee and refreshments will be provided. I hope to see you there!
Unfortunately I can relate to your story. I had an operation and ended up on a ventilator in the ICU. Spent 33 days there. This was 11 years ago and still haunts me. Possibly because I had several operations since and still worry it could happen again.
I have been going to therapy the last year and it has really helped. I feel like people that do not go through do not get it and it used to frustrate me. Now I try and control what I can. Any advice is appreciated
Hello,
I'm considered a trauma patient. December 2013, I was on my way to work and was hit head on by a sleeping Drive (MVA). I do not remember much and was flown by helicopter to a Trauma 1 medical center. I was in a coma for a month and in rehab facilities for 9 months. My injuries were extensive. Broken pelvis, TBI, damaged abdomen/bowel, many broken or fractured bones, blood clots, and many issues. This was three years ago. After many surgeries, rehab, and now back in rehab to walk without a walker. My biggest issues have been retraining of bowel and bladder and I'm still going from one extreme to another in this area. Other issues are with family members not understanding the severity, which I'm trying to overcoming issues with counseling. They were there in the beginning and now are estranged. I'm trying to rebuild my relationships with the ones I can. I still at times have some memory loss. Doctors consider me a miracle, while the daily pain and struggle remind me of where I'm at today.
@rsinger22 There isn't any set time limit on recovering from critical illness. Especially when you have repeat health issues that bring you right back to the worst times. A physician who I work closely with likes to refer to post-intensive care syndrome as "PTSD of the ICU". Having to undergo multiple follow-up procedures and/or surgeries can definitely cause anxiety and worry. You mention that you have been going to therapy. What do you find to be the most helpful from therapy?
@suzyann I am really glad you found this conversation and am so inspired by your strength to be where you are at today. You bring up a point that @rsinger22 mentioned "I feel like people that do not go through do not get it ". Unless you have personally experienced critical illness/injury, it is difficult to maybe impossible to fully be able to empathize with the person who has. This is such a common conversation that previously critically ill/injured people are having. Once the physical injuries of the trauma are improved, many people think you are all better. But there are injuries that one is unable to see - and those can be very long lasting. Have you participated in support groups, counseling, or anything else to attempt to make this connection with your family members?
@andreab I enjoy the ability to just speak my feelings and how I feel about different situations. There are many instances in my day where my health affects me but others have no idea. The therapist gives me a forum to express my thoughts and feelings in a non judged atmosphere
@suzyann you sure have had a lot to deal with. I am impressed by your strength. I think family members love us so much they don't want to realize how much a person is going through, if they do they will feel horrible and try to avoid that.
The bladder and bowel issues may sound minor but they are really not at all. I had fears of bowel problems when I was on lactulose prior to a liver transplant. Lactulose forces bowel movements, often without much warning, so I was frequently afraid to go places. I always have bladder problems, being somewhat incontinent and these days I am supposed to drink 80 - 100 ounces of water a day so that sure exacerbates the problem.
JK