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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?
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Dear Rosemary. You are such a very kind person and I thank you for being understanding of my situation. I do feel bad about boo hooing however I cannot keep stifling these feelings. Many people are so much worse off than I am and I feel somewhat selfish but all I know is what I experienced and the terror and fear this has brought to my life. I barely made it home yesterday from forcing myself to do simple errands that I used to do without a second thought.
I did read the pages you sent the link for. The part most interesting to me was the Breakdown of Pics. Wow. I could hardly believe what I was reading as the cognitive decline due to pics hit home with me. I have problems with my memory, forming (or grasping) for words that at one time flowed easily. I feel some relief knowing I’m not alone with my soggy brain and fumbling about while doing simple chores or whatnot.
Thank you once again for helping me so very much. I realize now that I’m not unique or alone. My faith has grown in leaps and bounds.
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4 Reactions@colleenyoung, thank you for the connections. The repeated episodes of septic and adrenal shock as well as delirium have been hard. It will be great to share with others. I don’t know anyone who has been through these experiences.
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2 Reactions@muriel66, I’m so glad that you have been writing and so sorry for your difficult experiences. I have had multiple episodes of septic and adrenal shock, all with delirium and ICU stays. I have only episodic memory of the illnesses and one blurs into the next. My wonderful husband helps to fill in the memory blanks as he was almost entirely by my side. I am just now recovering from the latest episode which was in late January to February. I often feel cognitively “foggy” and unable to focus, which troubles me. I do sometimes have troubling flashes of memory, particularly for painful procedures. Although, I also have some touching memories of my husband holding my hand and singing softly to me. It seemed to help call me out of the delirium and it is still so touching to me. I’m sort of just rambling a bit but am really just hoping to connect and share experiences. I hope we can be of help to each other. Thank you and best wishes.
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1 Reaction@andreab, I would like to write more but am still so foggy from my last episode (septic and adrenal shock, pneumonia, delirium, etc.). My brain doesn’t seem to want to clear and it seems to get worse with each episode, which worries me. Still, I have some memories of the ICU both good ones and troubling ones. I remember procedural pain but also remember my husband holding my hand and singing softly to me. The latter seems to call me back from the delirium. He’s a great person and a devoted husband throughout this protracted illness. I’m very fortunate in many ways. I’ve never met anyone who has had similar experiences so this forum is wonderful for me. I hope I can also be helpful to others despite my cognitive foggiest.
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2 Reactions@laci I am so happy you found this conversation. This is exactly where you belong! Sharing your story and listening to others will hopefully be a powerful experience for you in your healing. Your description above fits the definition of PICS nearly down to the word. I am sorry life has taken you on this journey, but am also glad it led you to this group. As you have already experienced, there are some wonderful people here ready to help!
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2 Reactions@rckj my apologies for the delay in my response. I have read through all of your posts in this conversation, and I am so thankful to you for sharing your story with all of us. Experiencing critical illness one time is often life changing and traumatic, but to have gone through this multiple times must seem surreal. I imagine one never gets "used to" being critically ill. You also have such a unique situation in that you are yourself a psychologist with expertise in precisely what you are dealing with. I hear you mention concern for your patients and how to manage and juggle the work/life/healing balance. Please know that it is very common for people who have experienced critical illness, to have a delay in returning to work. This is something that is not talked about that much, so often times people think they have to just "toughen up" and get back to work. But the reality is just exactly what you are describing. Even if your physical self has healed, the cognitive difficulties/"fogginess" and emotional wounds can just as easily prevent you from returning to life as it was. The fogginess that you describe is also reflected in what @muriel66 has shared with us as well. You can see you are not alone in this!
@andreab thank you for following my posts and your kind and understanding response. It does seem very surreal and I agree that you never get “used to” it. I truly don’t know how many times I’ve been through this. My husband estimates over 20 times. I have severe adrenal insufficiency and am also susceptible to infections, hence pneumonia, sepsis, adrenal shock, delirium, etc., without warning symptoms, is the pattern. I feel so worried for my husband having to see this repeatedly and being frightened for my life (as am I). He is strong and supportive but I worry about the impact on him and other family and friends. The good news is I traveled from my home on the east coast to Mayo in Minnesota in the summer and now have action plans which are helping, both with daily functioning and in reducing the number of episodes. It has given me so much more hope and has made a difference. I keep thinking about the surreal nature of all this and realized something both good and sad. The closest hospital knows me very well. ER, ICU staff, MD’s, etc and I all know each other. They know exactly what to do for me in crisis. A huge comfort and relief but it is also sad that we should know each other so well under these circumstances. The standing joke is “ couldn’t you just come back to visit?”. But I am fortunate that their skill and kindness has gotten me through so much and I trust them even during scary procedures. I sometimes feel haunted with the memories of some procedures. I don’t want to spell it out further because I’m afraid it would trigger someone else on this forum. My memories are foggy but persistent. I’m trying to work on coming to terms with this. With regards to work, you and others here have given me some perspective especially that I can’t just tough it out. I have to care for myself first then judge if I’m truly ready to care for others as a psychologist. The needs of my patients pull on my heart but they are being well cared for by colleagues. Being in the trauma field is a unique position but perhaps I must tend to my own trauma first, given the circumstances. I thank you and all of the people on this forum for your amazing kindness and support. I hope I can also be of help to others as needed. Not being familiar with sharing in this way, I had held back my name. I see now that that was an unnecessary fear. Thanks to all, Rhoda
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2 ReactionsMy name is Paul, I am a Vietnam Vet serving at Phan Rang AF Base 1967-68. I was there during TET OFFENSIVE, my job was Weapons Specialist spending most of my time at the end of the runway on base loading weapons on aircraft. I also was a gunner during TET when extra people were needed. I am now retired and recovering from a series of surgeries that landed me in a hospital for 100 days straight. I have loud noises in my head that keep me from sleeping. I developed Asthma upon my return from Vietnam and being stationed in Arkansas. I got out of the service after my 4 year duty was up. I now have NET/MET to the liver and can not have anymore surgery on my abdomen, my initial surgery was due to a perforation of the colon and I am left with a permanent ileostomy.
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2 Reactions@carcinoid, Hello Paul
I appreciate your posts both in this discussion group as well as the NET discussions. Your input is very helpful to others! I appreciate your service to our country and I feel badly that you are experiencing these health problems. Do you think that the NET was due to exposure in Nam?
Teresa
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1 ReactionVery likely, yes I have thought about that an awful lot. I do have a 44 year old daughter who was born with redness on her hands and feet and I wonder if that is something I passed on to her because of Nam. I understand the VA is currently evaluating and possibly adding some more medical issures related to Agent Orange-however, carcinoid is not one they have put on that list. I was directly exposed to the point of saturation at least twice during my tour and left with no way to wash or even take what little clothes I had on - off. It was hot there !
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