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

Posted by @colleenyoung, Jan 13, 2017

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?

REPLY

@muriel66

It has been ten days since my last statement about the way I am. I become more and more in touch with the ways I experience PICS after severe septic shock (2016) and septic shock (2017). I hope I am not repeating myself when I say that frankly I am cognitively and emotionally worse than I was before I experienced the second incident of septic shock. My concentration certainly is worse, as is my depression. Of course, depression can diminish concentration and diminished concentration can exacerbate depression.

It is positive that I finally accept that my depression is substantial and thus, I am more patient with myself and less judgmental of my cognitive disfunction. (Pat me on the back, please.) The uneasiness that I have is not knowing if in the future, I will return at least to the level of cognitive/emotional healing that I experienced before the second experience of septic shock. In other words, I am concerned about whether or not I will be able to function in a more ‘normal’ fashion. (Please pray for me.)

Tonight my brain is weary. I need to rest… and that is a subject about which I later will comment. My dreams seem long and complicated. I wish they were simple ones. Anyway, I continue to be thankful to be alive and as very-well as I am! My dear husband and I laugh about some of the silliness in my changes and our adjustments. Thanks for listening! M.H.

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@windwalker yes finally! I have visiting nurse 3 times a week home Physical therapy 3 times a week doctors appointments twice a week, my husband flushes my pic line every day and nursing changes the bandages on it. Whew! Lots of medical support and emotional support. This last hospitalization was hard especially the ICU part but everyone knows me now and it’s a good hospital which helps. Glad to be home with my husband, friends, cats etc.!!!

@muriel66

It has been ten days since my last statement about the way I am. I become more and more in touch with the ways I experience PICS after severe septic shock (2016) and septic shock (2017). I hope I am not repeating myself when I say that frankly I am cognitively and emotionally worse than I was before I experienced the second incident of septic shock. My concentration certainly is worse, as is my depression. Of course, depression can diminish concentration and diminished concentration can exacerbate depression.

It is positive that I finally accept that my depression is substantial and thus, I am more patient with myself and less judgmental of my cognitive disfunction. (Pat me on the back, please.) The uneasiness that I have is not knowing if in the future, I will return at least to the level of cognitive/emotional healing that I experienced before the second experience of septic shock. In other words, I am concerned about whether or not I will be able to function in a more ‘normal’ fashion. (Please pray for me.)

Tonight my brain is weary. I need to rest… and that is a subject about which I later will comment. My dreams seem long and complicated. I wish they were simple ones. Anyway, I continue to be thankful to be alive and as very-well as I am! My dear husband and I laugh about some of the silliness in my changes and our adjustments. Thanks for listening! M.H.

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@rckj Great! I am glad that you are home now. You sure have a busy schedule! May I ask what they are having you do for physical therapy? Are you so glad to see your kitty cats?

@muriel66

It has been ten days since my last statement about the way I am. I become more and more in touch with the ways I experience PICS after severe septic shock (2016) and septic shock (2017). I hope I am not repeating myself when I say that frankly I am cognitively and emotionally worse than I was before I experienced the second incident of septic shock. My concentration certainly is worse, as is my depression. Of course, depression can diminish concentration and diminished concentration can exacerbate depression.

It is positive that I finally accept that my depression is substantial and thus, I am more patient with myself and less judgmental of my cognitive disfunction. (Pat me on the back, please.) The uneasiness that I have is not knowing if in the future, I will return at least to the level of cognitive/emotional healing that I experienced before the second experience of septic shock. In other words, I am concerned about whether or not I will be able to function in a more ‘normal’ fashion. (Please pray for me.)

Tonight my brain is weary. I need to rest… and that is a subject about which I later will comment. My dreams seem long and complicated. I wish they were simple ones. Anyway, I continue to be thankful to be alive and as very-well as I am! My dear husband and I laugh about some of the silliness in my changes and our adjustments. Thanks for listening! M.H.

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@windwalker hi Terri, so happy to be with the kitties (4 of them!)and my husband and friends. The home care service tends to keep a close eye on me because of the suddenness and severity of the episodes. Also we are fighting deconditioning and trying to keep up my muscle strength. Physical therapy at this stage is exercises for core strength, walking around the house with the walker, practicing the few steps to get in and out of the house for doctors appointments. I have to raise my hydrocortisone dose for exercise so everything has to be paced so I don’t get tired or ill, another balancing act. Later on when I’m a bit better, we will do the long staircase to my office, walk outside, maybe exercise bike. Swimming is out because the pic line can’t get wet. It’s hard after each episode to get strength back but I have a great physical therapist. We always have to balance to make sure it’s not too much for the adrenal insufficiency. I used to be really fit before this illness and hope to gradually get more strength back. Thank you for all the support. It’s hard sometimes. How are you doing? Rhoda

@muriel66

It has been ten days since my last statement about the way I am. I become more and more in touch with the ways I experience PICS after severe septic shock (2016) and septic shock (2017). I hope I am not repeating myself when I say that frankly I am cognitively and emotionally worse than I was before I experienced the second incident of septic shock. My concentration certainly is worse, as is my depression. Of course, depression can diminish concentration and diminished concentration can exacerbate depression.

It is positive that I finally accept that my depression is substantial and thus, I am more patient with myself and less judgmental of my cognitive disfunction. (Pat me on the back, please.) The uneasiness that I have is not knowing if in the future, I will return at least to the level of cognitive/emotional healing that I experienced before the second experience of septic shock. In other words, I am concerned about whether or not I will be able to function in a more ‘normal’ fashion. (Please pray for me.)

Tonight my brain is weary. I need to rest… and that is a subject about which I later will comment. My dreams seem long and complicated. I wish they were simple ones. Anyway, I continue to be thankful to be alive and as very-well as I am! My dear husband and I laugh about some of the silliness in my changes and our adjustments. Thanks for listening! M.H.

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@rckj I am doing great right now. So good in fact, you'd never guess I had any illness. I am infection free at this time and trying to remain that way. I have to be on antibiotics indefinitely to keep mirorganisms from invading my lungs. I was out of town for two weeks so I am enjoying being home and picking up my hobbies again. I am currently making jewelry to sell at a big artisan street fair in October. (I sold out last year). So, you have FOUR cats? I LOVE cats but cannot have them due to my lung issues. I have a 5 lb teacup poodle. She is adorable and smart. Your exercise regimen sounded good until you mentioned a long staircase! I have a two story home and I tell ya, my staircase is going to be the end of me! I have 37% lung function, which isn't too bad until one goes up and down stairs all day. I invariably forget my cell phone etc. It's always something…. My optimistic self says "that's exercise baby!" Your excercise sounds like a delicate balancing act. Get your strength up so you can get to the Mayo next month. I want you to know that I think about you often and just know that there is a gal in South Carolina that is rooting for team Rhoda!

@windwalker

@rckj I am doing great right now. So good in fact, you'd never guess I had any illness. I am infection free at this time and trying to remain that way. I have to be on antibiotics indefinitely to keep mirorganisms from invading my lungs. I was out of town for two weeks so I am enjoying being home and picking up my hobbies again. I am currently making jewelry to sell at a big artisan street fair in October. (I sold out last year). So, you have FOUR cats? I LOVE cats but cannot have them due to my lung issues. I have a 5 lb teacup poodle. She is adorable and smart. Your exercise regimen sounded good until you mentioned a long staircase! I have a two story home and I tell ya, my staircase is going to be the end of me! I have 37% lung function, which isn't too bad until one goes up and down stairs all day. I invariably forget my cell phone etc. It's always something…. My optimistic self says "that's exercise baby!" Your excercise sounds like a delicate balancing act. Get your strength up so you can get to the Mayo next month. I want you to know that I think about you often and just know that there is a gal in South Carolina that is rooting for team Rhoda!

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@windwalker hi Terri! Sorry it took me a bit to get back to you. I had a few tough days but managed to stay out of the hospital. On high dose IV antibiotics through my picc line for another infection (sigh…), hydrocortisone and watchful waiting. I seem to be slowly improving which is good. So glad you are able to do what you love and I agree those staircases are exercise! Fortunately I can mostly stay on one floor unless I need my clinical office. (I’m a psychologist) but am on medical leave right now. I miss my work but I’m not well enough yet. It helps to have an office in the house in terms of returning to part time work. Hey I had a teacup poodle when I was a child! They are wonderful. We used to call them pocket poodles. And yes we are the crazy people down the street with all those cats! It’s a large house and they all get along so it works. House doesn’t smell like cat which I would hate due to good cleaners but I know Mayo pulmonology is not happy about our troupe of adoptees. I can’t bear to let them go so the compromise is frequent cleaning of the house. Exercise is for me a delicate balancing act to get stronger, less deconditioned without pushing myself over into adrenal shock. Can and do premedicate for adrenal function, which helps. Hoping for Mayo soon but the doctors are conferring on when and what can be done so I wait slightly impatiently but I do need time to gain strength. So glad to be talking with you and wish you only the best from this gal in Massachusetts! Talk to you soon, I hope. Rhoda

hello – thank you for raising this important issue that I believe is vastly underestimated and not dealt with in a timely and effective way! There are many "horrific" and unexpected happenings when you have brain surgery that is not addressed
Like when the first time they take your surgical bandage off to let the 34 staple wound be open to the air – and you go into the washroom on your own – wash your hands and look up at your face in the mirror
UTTER shock – I almost passed out. In researching and reviewing the symptoms of PST, I truly believe that I suffered from that
And yet, NO professional help was given to me to help me.get through the most difficult period in my life. 8 days in hospital has major recurpussions.
So.again thank you and I look forward to hearing from others in this discussion group

This is a good forum. Glad it is here.

I have been in ICU only once in my life and could hardly wait to leave. It was when they woke me in the middle of the night following my heart bypass that made me anxious to leave. While I was awake a nurse not assigned to care for me entered my room and asked the nurse who was assigned why my case was of such importance (paraphrased). My nurse replied he did not know that fact. The next night the assigned nurse (a different one) came to my button push and took the call button away and put it out of reach on a shelf above my head. Having had surgery only 2 days prior I was in no shape to get up and get the call button so the nurse could come quiet the monitor that kept screaming its lungs out and disturbing my sleep. The second day after my open heart procedure I got out of bed and walked the entire distance to my room so I could get out of that place. Of course I had a nurse(different one) accompanying me and I pushed the equipment in the wheelchair, it did take me about 10 or so minutes, but I'd never have wanted it any other way. I'd say it was good riddance to that place.

I believe these are part of what almost every patient who will join this forum will recall as part of why they hated being in the ICU.

Eileen

Hi, everyone,
Welcome to the new group dedicated to intensive care (ICU), critical care and post intensive care symptoms (PICS).

As this discussion has shown, intensive care is a very unique experience and one that most people are not prepared for. It can have lastly effects to patients and families alike. For this reason, we opening a group specifically about ICU and PICS. All current discussions about ICU, PICS and related topics such as sepsis, delirium, ventilators, etc have been moved to the new group and you will continue to get notifications about the discussions you participate in.

See the new group here: https://connect.mayoclinic.org/group/intensive-care-icu/

– Follow the group
– Browse all topics
– Add a reply
– Start a new discussion

If you’re not sure how to do any of these things, see this step-by-step guide https://connect.mayoclinic.org/get-started-on-connect/

In 2014 I got the flu and did NOT get my flu shot. I had the H1N1 influenza strand. What followed was two months of an induced coma fighting Sepsis, Pneumonia, Acute Respiratory Distress Syndrome (ARDS), and multi-organ failure. Every day I feel so fortunate to be alive. I was a healthy young man in the prime of life who just got the flu and faced death. The medical and nursing care I received was incredible. From that experience I became a nurse and completed graduate work in Public Health. I am even doing research right now on how to improve communication barriers of awake-mechanically ventilated patients to improve outcomes. I am a patient-family advisor and share my story in hopes it will make an impact. I'm moving on towards doctorate studies now to focus on Patient-Family Centered Care and including patients and families in my research and even as co-authors. I'm happy to join this conversation and look forward to more engagement.

@jasonrn

In 2014 I got the flu and did NOT get my flu shot. I had the H1N1 influenza strand. What followed was two months of an induced coma fighting Sepsis, Pneumonia, Acute Respiratory Distress Syndrome (ARDS), and multi-organ failure. Every day I feel so fortunate to be alive. I was a healthy young man in the prime of life who just got the flu and faced death. The medical and nursing care I received was incredible. From that experience I became a nurse and completed graduate work in Public Health. I am even doing research right now on how to improve communication barriers of awake-mechanically ventilated patients to improve outcomes. I am a patient-family advisor and share my story in hopes it will make an impact. I'm moving on towards doctorate studies now to focus on Patient-Family Centered Care and including patients and families in my research and even as co-authors. I'm happy to join this conversation and look forward to more engagement.

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Welcome to the discussion @jasonrn ! This has been a very powerful forum for those who have experienced critical illness either as a patient or as a loved one. Your unique experience as both a patient and now as a health care provider will offer a fantastic perspective. Glad you have joined.
In the years following your critical illness, what have been some of the biggest challenges you have faced?

@andreab

Welcome to the discussion @jasonrn ! This has been a very powerful forum for those who have experienced critical illness either as a patient or as a loved one. Your unique experience as both a patient and now as a health care provider will offer a fantastic perspective. Glad you have joined.
In the years following your critical illness, what have been some of the biggest challenges you have faced?

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@andreab The first year was the hardest. No one prepared you for what happens when you go home and what life is going to be like. I dealt with PICS, PTSD, anxiety/depression, opiod withdrawl, neuropathy, losing my hair, dealing with scars from injuries I sustained while a patient from the oxygen tubes, feeding tubes, chest tubes, and trach; nevermind the impact it had on my family. The first few days in the ICU my family was called to my bedside to say good-bye,…this happened on more than one occasion. It was hard for some to let me back in after that. How do you let someone back in when you've come to terms with the fact that they are gone? Of course then we had to deal with just getting back to some type of normal again, which nothing is really quite normal after that experience and environment. Bills needed to be paid and then I had to deal with insurance companies and disability which do not want to pay claims. Those hoops and hurdles were extremely draining and frustrating and required lawyers and social workers. I had lost 85 lbs being in the ICU then gained a lot back from all the medications. I had extensive nerve damage from being put on my belly in the ICU for up to 18 hours and being rotated back and forth which took a team of 25 people the first couple times. The nerve conduction therapy to try and identify which nerves were impacted was a nightmare that required needles and small shocks. In spite of these adversities I knew my life had some meaning and pulled strength from places I never knew I had. I found amazing "helpers" along the way. I had a hand-therapist who helped me gain use of my hands again, a psychologist who helped me with through my PTSD, and healthcare providers who listened. I always share some words of wisdom that Fred Rogers (from Mr. Rogers Neighborhood) mother shared with him…"Look for the helpers." No matter how bad things are, there are always helpers. This gives me hope, and I use it to try and impact my interactions with others. Thank you for allowing this platform for me to share my story. You are a great example of a helper! 🙂

Hey,
Day 41 in the hospital after respiratory arrest, seizures… 3 days on a ventilator in ICU, loss of mobility on left side. Now they don't know what to do with me (my pulse goes above 170 when I am on my feet). So I sit in a hospital bed in a tiny hospital that hasn't a clue what to do…

I have been in ICU too many times. At 17 when I broke my neck and had a TBI. Then when I had a full-blown stroke five years ago (lost everything but got the clot-buster and got most back). The times my blood sugar bottomed out (10, 25, 37…) and they couldn't stabilize it. And for three autumns in a row, respiratory arrest.

I hate hospitals. I have yet another PCC line. I feel like a GOMER – who stays in a hospital this long?? My PTSD is at an all-time high but there is NO emotional support… I got to the point where I ASKED.

The speech therapist did a camera study for the dysphagia. Yep, seems aspiration is an issue. She says I can get stronger. And I think… Yeah… And every year I still aspirate and end up not breathing, but just pretend that hasn't happened… Invalidation.

It gets crazy-making!

@nissi

Hey,
Day 41 in the hospital after respiratory arrest, seizures… 3 days on a ventilator in ICU, loss of mobility on left side. Now they don't know what to do with me (my pulse goes above 170 when I am on my feet). So I sit in a hospital bed in a tiny hospital that hasn't a clue what to do…

I have been in ICU too many times. At 17 when I broke my neck and had a TBI. Then when I had a full-blown stroke five years ago (lost everything but got the clot-buster and got most back). The times my blood sugar bottomed out (10, 25, 37…) and they couldn't stabilize it. And for three autumns in a row, respiratory arrest.

I hate hospitals. I have yet another PCC line. I feel like a GOMER – who stays in a hospital this long?? My PTSD is at an all-time high but there is NO emotional support… I got to the point where I ASKED.

The speech therapist did a camera study for the dysphagia. Yep, seems aspiration is an issue. She says I can get stronger. And I think… Yeah… And every year I still aspirate and end up not breathing, but just pretend that hasn't happened… Invalidation.

It gets crazy-making!

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Nissi,

You post makes me think you may be having Autonomic Dysreflexia. The severe increase of you heart rate when standing is one of the signs. The broken neck in you teen years should always be a signal to the medical personnel to watch for your body to act very strangely. Sure, you medical personnel may tell you it only affects your blood pressure, but having dealt with a son with a C1-C2 injury I learned this buggeroo can also affect more than just your BP readings. I've given you a web article to read more about it.

Also http://www.unitedspinal.org is a big help with information and maybe you were not given them as a reference tool.

https://emedicine.medscape.com/article/322809-overview

Hi @nissi, welcome to Connect. I hope that connecting with this community online can offer some of the emotional support that is lacking for you at the moment. I know you are currently in the hospital. Are you out of ICU?
I'd like to bring @glinda into this discussion. She, too, has spent a long period in the hospital. Mind you, her situation is completely different from yours as she was recovering from a serious car accident. She is also no stranger to ICU as she is a heart transplant recipient.

Nissi, how are you managing the PTSD? What symptoms are you experiencing?

Hi @colleenyoung, sorry it's been awhile since I have been on connect yes I would love to join this discussion and yes you are right about me spending slot of time in the ICU it's every time I end up in the hospital that I go straight to the ICU.and yes I also understand on the PTSD I struggle with it daily if there is any advice I can give on about the PTSD it is to find a grounding

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