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

Posted by Colleen Young, Connect Director @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?

Interested in more discussions like this? Go to the Intensive Care (ICU) Support Group.

rsinger22 | @rsinger22 | Apr 4, 2017
In reply to @baceman "Wow... a year ago I suddenly developed severe nec pain and lost all feeling in my..." + (show)
@baceman

Wow... a year ago I suddenly developed severe nec pain and lost all feeling in my left arm. Saw an orthoneurosurgeon ad was found that I have a disease that turned my spinal Ligament to bone forcing the discs to crush my spinal cord.

Surgery was scheduled for the following week but I never lasted that long. The pain was so great and the condition so bad that I lost function of my left arm and leg and that was the last thing I remembered for a month. Wife took me to the ER and they did surgery the same night... for six hours.

After surgery, I started to bleed after the removed the breathing to to the point where they couldn't put the tube back in and they performed an emergency tracheotomy to save my life. During that, they ended up resuscitating me for the first time. Off to the ICU and now am totally paralyzed. Two days later I start bleeding again and theybtrsucitate me for the second time.

I was in the ICU for 3 1/2 weeks. Don't remember any of it. My issue is I am a clinician who practiced in the ICU so when I came to, it all hit me. I cried for weeks,

I am a year out and still partially paralyzed on my left side. I can't stop talking about my issues to people. Even perfect strangers. I cry at the drop of a hat. I went back to work full time only to find that I cannot physically do the work due to the pain.

My wife just wants me to stop talking about it but I am consumed with it. I know that I have t fully dealt with it. Now I'm staring down the barrel of having to have another surgery and I am scared to death (pardon the pun). Can't talk to my wife about it and my family and friends are tired of me talking about it.

I am seeing a counselor (just started). The ring that bothers me the most is this gap in time and memory. And the residual paralysis and pain is t helping. I'm afraid of losing my job and the change all of this means in our lifestyle. Scared only scratches the surface... the nightmares have pretty much subsided and I am filling in the gap in time with fantasy. I just make it up. I don't know what else to say...

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@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

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JK | @contentandwell | Apr 4, 2017
In reply to @suzyann "Hello, I'm considered a trauma patient. December 2013, I was on my way to work and..." + (show)
@suzyann

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.

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@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

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Mentor
Teresa, Volunteer Mentor | @hopeful33250 | Apr 5, 2017

Thanks @suzyann for your post. You have been incredibly strong in the face of a major trauma. Take time to appreciate that strength that you have. Best wishes as you try to reconnect with family, but also as you make new friends who can appreciate what you have accomplished. Teresa

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chattykathy | @chattykathy | Apr 6, 2017

Hello; I have just joined this group and want to know more about PICS. I underwent liver/kidney transplant 5+ years ago and have some issues that are unexplained and wondering about this syndrome. As I learn more, I will share my story in hopes to inspire and help others.

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Annie Johnson | @andreab | Apr 6, 2017

@chattykathy I am happy you found our conversation. Are there symptoms in particular that you have questions about? I also want to make sure you have seen our Page at https://connect.mayoclinic.org/page/pics/

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1 reply
chattykathy | @chattykathy | Apr 6, 2017
In reply to @andreab "@chattykathy I am happy you found our conversation. Are there symptoms in particular that you have..." + (show)
@andreab

@chattykathy I am happy you found our conversation. Are there symptoms in particular that you have questions about? I also want to make sure you have seen our Page at https://connect.mayoclinic.org/page/pics/

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Yes, I have seen some of the posts and hope it was the right page. I am really not sure as I just came upon a post about PICS. I did register and login. I received e/mail notices this morning and read them and went to the connect page and logged in. My symptoms are a sensation like my insides are quivering at times, not all the time. I have vivid dreams, not really nightmares, like a movie I am watching which is strange as I am considered blind as I only have light perception vision. I have stiffness and walk like a zombie when I first arise in the morning and sometimes throughout the day when I stand from seated position. A wave of pain, at times, when I first go to bed that starts in the lower back region, tailbone, and settles underneath my jaws on both sides then stops. This sensation does not happen often but, when it does, it makes my whole body pulsate. This is the best way I can describe the symptoms.Does this make sense and related to PICS. I had a long stay in ICU after my double transplant, 5-7 weeks, then 2 weeks at a nearby room outside hospital before traveling home. I was readmitted about a month later with an infection which was only a few days, not in ICU. It took about 2 years for my recovery and am doing well now except for above-stated symptoms. Although, I am able to live with them and very thankful to be alive.

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chattykathy | @chattykathy | Apr 6, 2017

I will check out the above-mentioned link to the page and make sure I have the right one. Thank you very much.

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Annie Johnson | @andreab | Apr 6, 2017

@chattykathy, There is still so much we are learning about PICS. We do know that everyone experiences it differently. There are commonalities such as nightmares/vivid dreams, physical weakness, and cognitive difficulties. It can be complicated to tease out if symptoms are related to medications, current health conditions, or PICS. Have you discussed your symptoms with your transplant team?

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chattykathy | @chattykathy | Apr 6, 2017

I just went for my yearly followup and mentioned some of my symptoms. Noone mentioned PICS to me. I am taking very few meds and everyone is amazed by this fact. My bloodwork was done on this past Monday and was normal except for tacrolemus which was 4.5 and they increased dosage to 3 mg twice a day. I was on 3.5 mg twice daily for a couple of years. I take metoprolol and CellCept along with prednisone. Other than that, only supplements and daily vitamins.
My journey has been a long and complicated one. I want to share it with the group, but it is a long story. I am wondering if it is to long for this forum.
My story involves the time leading to transplant, recovery in ICU with another surgery 3 weeks out from transplant, readmission after discharge to home, and another surgery 2 years out from surgery for revision of bile duct.

I have had an amazing journey with support from family, friends, and people I do not know along with all the medical staff that has cared for me over the past 5+ years. I am truly blessed to be alive and hope my story helps others. I am so glad to have found this forum.

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1 reply
Mentor
Rosemary, Volunteer Mentor | @rosemarya | Apr 7, 2017

@chattykathy, I want to welcome you to Mayo Connect. I am happy that you have joined this discussion. You have already discovered that we are here to share our experiences and thus receive and give support to each other. For me, one of the most amazing things, is how much we can learn from sharing our experiences. And that we are not the only one with these 'things' going on with us.
I am a liver/kidney recipient. Going on 8 years, and I have not experienced the same PICS symptoms as you. I take antirejection meds: tacrolimus and Cellcept.
I am always thrilled to meet another transplant recipient. I am especially happy to meet you! we share the same liver/kidney transplant. You have been on an amazing journey! And yes, your journey will help others.. I encourage you to share whenever you are ready to talk about it.

I want to invite you to visit the transplant discussion forum, too. I know that there are others who are in all levels of the transplant process, who would benefit from your experience.

Here are a couple of my favorites:
https://connect.mayoclinic.org/discussion/living-life-after-your-transplant/
https://connect.mayoclinic.org/discussion/celebrate-your-transplant-blessings/

https://connect.mayoclinic.org/discussion/new-blog-posts/
I
Rosemary

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