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colleenyoung

Post-Intensive Care Syndrome (PICS) - Let's talk

Posted by @colleenyoung in Just Want to Talk, Fri, Jan 13 at 3:50pm CST

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?

rook

Posted by @rook, May 23, 2012

I am looking for others who have been on a ventilator and were able to get off and how their life is now. I was on a vent for a month, had a trache inserted after ten days which remained for an additional month àfter i got off the vent and am having several complications from the experience....foot drop, peripheral neuropathy in both feet, and nightmares. I posted more info on my wall if you want to read it. I am hoping there are others on this site who can relate to what I am experiencing now.

colleenyoung

Posted by @colleenyoung, Fri, Jan 13 at 4:00pm CST

Hi @rsinger22 @tdes19 @ceci2814 @rook @1959 @dawn_giacabazi @mkf1 @soul @02121949 @mom2mba, I'd like to invite you to the new discussion group about Post-Intensive Care Syndrome. It's a space where we can share the experiences of critical care, honestly and openly without judgement. Whether you were in ICU yourself or caring for someone who was in ICU, please join us. Pull up a chair and tell us a bit about yourself.

kariulrich

Posted by @kariulrich, Fri, Jan 20 at 8:54am CST

Dear Rook, I am sorry to hear what you are going through. I have had several hospital stays that included ICU, but not nearly for the amount of time that you have been through. I do have nightmares at times that are so real and vivid that I am back at the hospital and no one can help me, I am constantly searching for my specific doctors but they are not there. They are frightening when they happen. I will read more about your experience. Thank you for sharing it.

colleenyoung

Posted by @colleenyoung, Fri, Jan 20 at 6:35pm CST

Kari, are you woken from these dreams and still feel the fear once you are awake? How do you deal with them? Have they become less frequent over time?

kariulrich

Posted by @kariulrich, Mon, Jan 23 at 2:43pm CST

Thank you for asking Colleen. Yes, when I have these dreams they are so real and vivid when you finally wake up there is a sense of confusion. I am not sure where I am and if what I experienced in my dream really happened or not.. I can describe colors, smells every last detail of the dream. When I finally realize it was a dream, it still affects me for the rest of day or days. I do not know if that makes sense to anyone. I am lucky that I can express what I have gone through in my dreams with my husband, but I do not think he truly understands the impact they have. My dreams seem to pop up again when I have symptoms. So In the past year I would say they have happened only a handful of times.

milindohope83

Posted by @milindohope83, Mon, Jan 23 at 11:56pm CST

I think it is very difficult for the a person to truly understand what you are going throught, the amount of stress, pain, fear of the unknown and all that goes along with the after effects of trying to survive a severe illness, accident or trauma that has been life threatening. It really effects your brain chemistry as well. All those things must heal and it takes time and understanding. Perhaps if your husband could go through therapy with you to help him understand of and deal with his fears.

ssrn

Posted by @ssrn, Fri, Jan 20 at 9:37am CST

I'm so glad that mayo clinic connect has created a space to talk about the stresses and consequences of being seriously ill. I have been personally affected by two family members that had ICU admissions. My grandmother is still struggling with physical debility and memory issues since her ICU stay - even years since her illness. My husband had a very brief stay in the ICU after a major health scare and I can tell you, even as a healthy young man, the stay traumatized him and affected him psychologically long after he recovered physically - it is something he will never forget.

I'm looking forward to hear others' experiences, what works well to cope, and personal struggles and triumphs. No one plans for a stay in the intensive care, but those that find themselves there have to deal with how life changing the experience can be.

colleenyoung

Posted by @colleenyoung, Fri, Jan 20 at 6:40pm CST

Welcome to Connect, Stephanie (@ssrn).
Were there any programs, support groups or counseling offered to your grandmother, husband or family post ICU? How has the experience affected you as well as your husband?

I wonder if you might have something to add to this discussion on Connect. Pat is concerned about cognitive decline in choosing surgery.
- Anesthesia types and effect on cognitive function in elderly persons http://mayocl.in/2jJpbZw

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rosemarya

Posted by @rosemarya, Fri, Jan 20 at 7:46pm CST

When I spent 5 days in ICU with sepsis, dehydration, acute kidney failure, and endstage liver disease, I was in and out of awareness. I was sometimes halfway aware of my surroundings, or activities happening to me and around me (only if I was moved, or a sudden noise). I have a partial recollection of the people and of the procedures. But I had no context time.
I have a vague recollection of being flown to another hospital. And arriving there. Although not in ICU, I was on the transplant floor at Mayo Methodist, and for the first few days, I continued to be in and out of awareness.
Later on, when I asked my husband, who is my caregiver, to explain to me what had occurred, I was shocked. So much had occurred that I didn't even realize. And on top of that , my memory of it, was all jumbled. For a while this really bothered me. But now, as time has passed, (8 years) it is not a concern to me, anymore.
Rosemary

ssrn

Posted by @ssrn, Fri, Jan 20 at 8:20pm CST

Rosemary-
Thank you for sharing part of your story. It's reassuring to hear that the chaotic experience has faded some over so many years. How is your health since then? How is your husband doing? I've heard that memory loss and time gaps are common in people who are so seriously ill. Other than the passing of time what helped you get past it all?

rosemarya

Posted by @rosemarya, Fri, Jan 20 at 9:04pm CST

@ssrn, Welcome, and thank you for your reply.
Stepanie, I am happy that by sharing my experience that I can offer you some reassurance. That is the purpose of Connect.
First, my husband. He is still very emotional about this. He had tears in his eyes tonight when I had him proof read my entry. You, see, for him I believe it is more difficult. He had to stand there, helpless, and watch me as death became a real possibility. While I was so sick that I did not fully comprehend.
Me, I am doing exceptionally well. I had a different experience than most. I needed a liver transplant and the complications from my condition led to my hospitalization that I refer to. I did get my liver and kidney transplant and now am living a full healthy life.
One thing that really helped me get thru the memory thing is the Mayo patient portal; I have access to all my medical records. I have spent many evenings, reading my medical history that occurred after the air transfer to Mayo. And I have soaked many Kleenexes with my tears during the process. I do not have any medical records from the first 5 ICU days, and that does bother me.
I think that as I become involved in other activities, that I don't feel a need to "go back there". I do continue to my quiz husband, or my 2 sons who were with me at various times. And my sons are very uncomfortable with that, too.
I do have some new issues with my memory, and with processing information. I seem to get confused or off task more easily. So I keep lots of lists! I really don't know if that is from surgery, or from medication side effects, or age.
Stephanie, How long ago has it been since your husband had his time in ICU? How are you doing?
Rosemary

rosemarya

Posted by @rosemarya, Sat, Jan 21 at 6:55pm CST

@ssrn, Stephanie, I want to share this with you.
This is what has happened to me after my reply yesterday: My well-thought-out-reply has stirred up the dust, so to speak, in my mind. Today I have experienced a "firestorm" of memories and flashes of events that occurred relating to my severe condition around the time and during my ICU care. My mind is racing everywhere. And tears are ready to flow. I thought that I was in control and had this all behind me, but my mind and emotions are telling me otherwise. This has not come on like this before. I wonder if this is anything like your husband has experienced or is afraid of experiencing.
Hugs and Strength,
Rosemary

elizabethbryant

Posted by @elizabethbryant, Sat, Jan 21 at 8:31pm CST

I burst out in tears like of and on for 7 months after my surgery and care at John Hopkins, it was so morbid. It took 7 months for me to stop
and the crying didn't start immediately after leaving the hospital. I wonder if it is a combination of the drugs and trauma

kariulrich

Posted by @kariulrich, Mon, Jan 23 at 2:50pm CST

@elizabethbryant I am so glad you mentioned the combination of drugs and trauma. I will say that when I was transferred from ICU to the vascular floor I continued to have what I describe as "night terrors" and thinking about it now scares me to tears. It was an awful experience where I felt I was caught in the middle of falling asleep and being semi-awake, and the sounds and visions were awful. I do believe the pain medication played a part, possibly a side effect. It is something I have wanted to look into, but just never have.

milindohope83

Posted by @milindohope83, Tue, Jan 24 at 12:05am CST

Great insight! Yes, you are right. The pain medications are powerful, but also often produce a hallucinating effect, altered sense of reality. Some of those drugs are more problematic than others. They are great when you need them but it is not without consequences as well.

rosemarya

Posted by @rosemarya, Sat, Jan 21 at 8:58pm CST

@elizabethbryant, Thank you for entering this discussion. The situation that I talked about was 8 years ago. I think that I, too, cried afterward, for no apparent reason. Then I would get my husband crying, because we had been through such an emotional event. I had always heard, from other people, that the drugs and trauma were part of it, but I really don't know. Liz, how long ago was your surgery? Do you still have crying spells?
Sending you a hug, Rosemary

rsinger22

Posted by @rsinger22, Sat, Jan 21 at 9:48pm CST

I spent 33 days in the ICU in 2006. I had some more stats during the last ten years too. I still have a hard time when I sit and think about it or when other people talk about theirs or family experiences. I too am very emotional and will cry out of nowhere. I feel like no one understands and. Ow people do not even ask

rosemarya

Posted by @rosemarya, Sun, Jan 22 at 9:19am CST

@rsinger22, Yes it can be extremely difficult to be in those situations. I believe that it is okay to cry! In light of what you have endured, you have my permission to let the tears flow.
We, who are participating in the discussions on Connect do understand! Most of us have endured similar experiences, although the place, the time, the diagnosis might be different. We are here to share without judgment and to both receive and to offer support to others. I have learned a couple of things since I have been participating in these discussions: I am not alone in my struggles: it helps to talk (or write) about it; there is support for me; and I have found that I can support others and that feels good!
Remember that we do understand! we look forward to hearing from you if you would like to share.
Rosemary

colleenyoung

Posted by @colleenyoung, Sun, Jan 22 at 12:18pm CST

Thank you for joining us here @rsinger22. You are among people who understand. I hope that sharing in this conversation can help and heal. Welcome.

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milindohope83

Posted by @milindohope83, Wed, Jan 25 at 1:06am CST

There is strength and healing simply by expressing understanding of where a person is coming from, the pain, anguish and fear in being hospitalized or having a sick loved one in a place of suffering and pain. Sharing and expressing empathy with others is healing in its own way both emotionally and physically as well. We are complex beings. We can not all be put into a box. We all react to pain and suffering and loss in a very different ways. But we all respond to kindness and warm touch, a back or foot rub if appropriate,

rsinger22

Posted by @rsinger22, Wed, Jan 25 at 2:57pm CST

I have been in therapy for years dealing with my health situation and learning how to deal with my current health status as well as how other people are part of my life. After reading this board, I started to reflect on the days I spent in the hospital and raw emotion took over me. I have been more emotional lately because I think back to those times in the hospital and what I went through. I do not think I have adequately dealt with what happened and what I went through. I spent more time understanding people and the value of life and how fleeting it can be. I also came to gripes about who is there for you and others that might not be (not blaming them but just understanding that they may not be capable or totally do not get it) This whole subject really makes me reflect.

elizabethbryant

Posted by @elizabethbryant, Wed, Jan 25 at 9:56pm CST

I appreciate your openness in dealing with a health situation. It can be very hurtful sometime how family treats you.
I don't think they fully understand. The only thing good about remembering the hospital is when I want to put some junk
in my mouth and I remember the hospital and don't eat the junk.
The nurse told me at the hospital before the surgery that my life would never be the same. Two weeks after surgery mom
passed away, then after the drama of it all my husband left for good.
I have some good days and some not so good and it is up to me to try to stay away from negative. That and sugar are
my enemies.
Yes it makes one reflect on life and eternity. Thank you for sharing your genuine open thoughts.

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rosemarya

Posted by @rosemarya, Thu, Jan 26 at 7:42am CST

@elizabethbryant, Thank you for sharing your experience and thoughts. I k now that others will find comfort and encouragement in your words. You mentioned that sugar and negativity are your enemies. Would you be comfortable to share some ideas that help you to deal with these? I admire your strength as you move forward.
Rosemary

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elizabethbryant

Posted by @elizabethbryant, Thu, Jan 26 at 10:09am CST

Hey there, I find that sugar for me is addictive. I had no sugar from March until Christmas. I tried a small amount of sugar and
the inflamed tissue is set on fire. Then I remember the morbid painful time of oral surgery and have concluded in my mind
Its not worth it......Not worth it.!!!!! Whatever goes in my mouth is considered medicine for my body.
I have been making smoothies. $15. Smoothie machine at Wal Mart. The Budwig Cancer Protocol is cottage cheese and "Barlean" cold pressed flax seed oil, with Trivia and frozen organic raisberries (I can only find frozen at Kroger grocery)
Use Trivia which is part of my cancer protocol. Eating sweet potatoes, few white potatoes with a butter substitute "Earth Balance" Soy free, plant powered. No Bread, absolutely none or white flour. Use apples in smoothie Kale, celery, greens etc still I use Trivia. I order Green Pea Protein from Puritan Pride.recommended by John Hopkins.
John Hopkins alternative Med. also food grade Franckinsene some drops in a bottle of water. (High electric source)
See John Hopkins Alternative medicine. I love split pea soup. Frozen baby sweet peas. I eat these every day.
Trivia helps beat sugar crave for me. Pray (talk to God) read .....book of Psalms for encouragement.
David Jeremiah Archieves Google is doing a series on Hope, you choose what message encourages you.
Hope this helps. Take care. Sorry my PC is messed up, hope this comes out making sense.

rosemarya

Posted by @rosemarya, Thu, Jan 26 at 11:16am CST

Thank you Liz for the information. Your message came thru perfectly, even if your PC is being difficult!
I wish you continuing success with your health management.
Rosemary

milindohope83

Posted by @milindohope83, Thu, Jan 26 at 9:34pm CST

Good Evening, My Dear- May I ask what your health condition is at this time?  If you need to talk about it maybe I can help in some way.  Anita   

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hopeful33250

Posted by @hopeful33250, Fri, Jan 27 at 11:22am CST

@elizabethbryant Hi Liz: Sounds great and makes a lot of sense, I make smoothies as well. I've never tried the Trivia, but will look for it. Glad to hear that your food plan has eliminated some of the inflammation. You are doing well at taking care of yourself! Thanks for the encouraging post! Teresa

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elizabethbryant

Posted by @elizabethbryant, Sat, Jan 21 at 9:25pm CST

Sending you a big hug. My surgery was in April and I cried for no reason, the drama of it all and more surgery the doc said to come.
Then two weeks before Christmas my husband abandoned He wasn't up for the situation
as he became confused and we think he had a stroke during my surgery days he won't eat or drink. I turned to my faith in desperation. By the grace of God I was able not be moved emotionally when I had lunch with him and my grandchildren during Christmas. When you walk through this with the
ones you love, we are blessed. Sharing on this site. "We light each others candle" with hope and helpful medical information.

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rosemarya

Posted by @rosemarya, Sun, Jan 22 at 9:02am CST

@elizabethbryant, Thank you for the big hug that you send to all of us who read this message. And I send you a sincere thank you for sharing your powerful testimony of your faith and the strength that it has provided for you during your difficult journey.
I especially love what you said: " Sharing on this site. "We light each others candle" with hope and helpful medical information." That is our goal for our Connect conversations. We can share with others freely, without judgment. I am happy that you are part of our discussion. Rosemary

hopeful33250

Posted by @hopeful33250, Sun, Jan 22 at 1:05pm CST

@elizabethbryant Liz: What a great attitude you display in spite of your losses. i love the phase "We light each others candle" with hope and helpful medical information. So true of Mayo Connect! Thanks for that blessing! Teresa

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allisonsnow

Posted by @allisonsnow, Mon, Jan 23 at 10:57am CST

@elizabethbryantI whole heartedly agree that I have received many blessings since my initial diagnosis and thru to the recurrence. Most people take a step back when I say that, they think that getting cancer is the end of your life, period, weather you die or not. in one aspect they are right it is the end of life "AS WE KNEW IT". There are so many things I am no longer able to do that were an integral part of my life....BUT....I have been blessed with TWO more grandchildren ( I was given 2-3 months ) I am really a happier person, I am more calm , all those URGENT THINGS I HAD TO GET DONE ARE NOT SO URGENT. I am calmer I am more accepting of things as they are...I have rarely said why me? I have said why not me? would I rather a young mother was suffering as I am?, absolutely not!!!! and most importantly my relationship with God has gotten so much better ,so much closer. My faith is so much stronger than it was. How can I not be happy about that?!!!
And being able to share your thoughts with someone that truly understands where you are coming from.....that is a blessing
I have a friend who also was given a terminal diagnosis and we have shared often. I expect to see him today. this will be a test of love and strength because he is very close to the end and being witness to his sadness and pain can only make me more aware of when it will be my time, he has asked to see me today ( he is often not up to visitors ) so I will go and hopefully come away with an insight I did not have and feeling blessed that I knew him.
I usually struggle to share ( I want to keep everyone around me happy) but I was so moved by your comments I felt the need. Thank You

milindohope83

Posted by @milindohope83, Tue, Jan 24 at 12:13am CST

Yes! You have evolved in that you have come to the realization that each and every moment that you can share with a loved one and let go of all the trivial things we all hang on to in out lives is what counts. It is a spiritual awakening in that you now understand the value and precious moments in life. It is a sense of freedom and peace.

milindohope83

Posted by @milindohope83, Wed, Jan 25 at 12:51am CST

Thank you!

milindohope83

Posted by @milindohope83, Wed, Jan 25 at 1:08am CST

Yes, it amazing when a perfect stranger with a loving word and touch goes a long way to help you feel that you are not alone in your battle.

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elizabethbryant

Posted by @elizabethbryant, Thu, Jan 26 at 10:26pm CST

Hi Teresa, I hope all is well with you. It has been a relapse day for me and this cancer has left me
isolated from family and it seems the world. I don't speak clearly at times and the world can be cold
and hard. I worked the leaves yesterday with my riding mower which made the allergy even worse.
It should be better by tomorrow. I miss the husband that I married, he was with me some what during
the surgery, but had a health episode and I haven't heard from him and I have to get over this
loss and all the loss of who I was. I am the same person on the inside in my heart but everyone
is leaving. Just a really bad day I guess. I just hear negative information about this type of cancer.
I just needed someone to talk to and care tonight. Thanks for your caring on this site. Elizabeth

hopeful33250

Posted by @hopeful33250, Fri, Jan 27 at 11:28am CST

@elizabethbryant I'm pleased to be a caring friend on Mayo Connect. I do admire the steps you take to care for yourself. By the way, have you looked into speech therapy to help you communicate more effectively? After my vocal cord surgery (implant) I had a lot of speech therapy (almost every year). Perhaps that would help with your communication so that you could be understood better, or maybe a computer-assisted device that you could use and take with you? Just some thoughts, I know how isolated you feel. Hugs, Teresa

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elizabethbryant

Posted by @elizabethbryant, Fri, Jan 27 at 8:52pm CST

Thanks Teresa for responding. Lichen planus condition and Severe dysplasia are the issue and John
Hopkins surgeon stated speech therapy would only worsen the condition and I agree. I have limited
amount of speech because the inflammation......raw tissue gets so bad under my tongue.

hopeful33250

Posted by @hopeful33250, Fri, Jan 27 at 9:09pm CST

@elizabethbryant I'm so sorry that there aren't some better answers for you. Keep up your faith! Teresa

allisonsnow

Posted by @allisonsnow, Wed, Feb 1 at 8:17pm CST

Elizabeth I get where you are coming from "I am the same on the inside"
Sometimes I forget (or don't want to admit) the toll this cancer has taken. I make plans to work in the garden ...but my oxygen cord doesn't reach far...I take off the oxygen (yes I cheat 🙂 and I can't work very long...but in my head I am still able to do everything I could before. I am still surprised when I look in the mirror and see the oxygen tubing, it is all I see. The point is sometimes we put the burden of what we can or can not do on our selves. We see ourselves as still being 100% and refuse to work with the limitations we have. If we take an honest look at our own lives it is easier for others to see us as we are now. Don't know if this makes any sense but it is my perspective.

milindohope83

Posted by @milindohope83, Sun, Jan 22 at 8:48pm CST

Hello, this is aechiku. I have been a nurse for 28 years, worked in Trauma ICU, Er Radiology and other critical care situations. And caring for critical patients, especially if it is very long term is very hard on the patient as well as the family and staff. I was not familiar with name of the condition mentioned before. However, The condition was there all the time. It is so stressful for the patient and family but also the staff caring for patients with life threatening or severe illness or conditions. I am glad it is being recognized and understood. God bless all who are suffering in this wa, Anita

colleenyoung

Posted by @colleenyoung, Sun, Jan 22 at 8:53pm CST

Welcome Anita! We forget that ICU is hard on staff too. Grateful to have your perspective.

milindohope83

Posted by @milindohope83, Sun, Jan 22 at 9:01pm CST

Oh yes, especially if you care for them for weeks or more and it is determined that the condition that they are suffering with is never going to get better and there is little to be done except offer comfort to the patient and family. It helps them all to see familiar faces caring for them. It helps to know that you are not just a patient in a room who may never go home again from the hospital. It can be a tough job alot of the time, not just the medical care, but the emotional support. But it is the most important thing of all to offer in that that loving one on one care for all who are suffering in such a way.

rosemarya

Posted by @rosemarya, Mon, Jan 23 at 7:15am CST

@milindohope83, Thank you, Anita, and all of those who care for patients with severe or life threatening conditions. Please know that your compassion and understanding does matter. And the memory of your kindness, continues long after the emtional event.
Hugs, Rosemary

hopeful33250

Posted by @hopeful33250, Tue, Jan 24 at 6:43am CST

@milindohope83 I also appreciate your kind and compassionate attitude, Anita. There is no doubt in my mind that you bless your patients and their families! Teresa

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milindohope83

Posted by @milindohope83, Wed, Jan 25 at 12:31am CST

Thank you so much.  I always try to put myself in others shoes to have more empathy for their situation in  order to give the best care if i can.

milindohope83

Posted by @milindohope83, Thu, Feb 2 at 4:32pm CST

Thank you so much, Anita

hopeful33250

Posted by @hopeful33250, Fri, Jan 27 at 11:29am CST

@milindohope83 Yes, empathy makes a difference, always!

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kanaazpereira

Posted by @kanaazpereira, Fri, Jan 27 at 10:52pm CST

Hello,

I was reading this discussion, and couldn't help but notice the strength in all the messages, despite your difficult times, struggles and experiences.

I've never been in the ICU, but many years ago, I learned that life's turbulent phases do serve a purpose: they make us stronger, more determined and definitely more patient.
There's a saying: "A smooth sea never made a skillful mariner..." and I just wanted to say that I see that reflected so often, here on Connect.
Thank you.

milindohope83

Posted by @milindohope83, Thu, Feb 2 at 4:33pm CST

I loved your response and well taken!! Anita

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