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

I am so sorry that I have not responded to you, @rckj! I see that your statement was posted six days ago. I am not clear as to how to be notified that someone comments after me. I happened to enter this site today and saw your response to my post.

It sounds as though you are having repeated episodes, for which I have sympathy. It is with hope that I greet you today... hope that the effects of the recent episode will subside in noticeable ways as the days pass. I did not sense that you were rambling. For me, it helps to mention details. Somehow recalling and restating my experience of severe septic shock (2016) and septic shock (2017) helps me. Maybe I feel that if I examine over and over, I will get past it (or, do I hope that I will learn it did not happen... or that it was not as bad as it seems?).

Fogginess is one of my main after-effects. I refer to it as mental sluggishness. Are there specific ways or times that you experience this? If you would like to say more, it would help me to know more about your troubling flashes, so I understand. Nightmares were (and can still be) the most difficult for me, even though they are not necessarily related to ICU or even medical care. My worst one occurred after I left ICU and was in a room on a different floor. Thankfully, one of our sons slept in the room and alerted the nurse, who arranged for an intern to join him in hearing my story.

Please state more as will I to continue our conversation. I will not be at a computer Feb. 24 through March 2, so do not be dismayed if/when I do not respond. May you experience a sign of hope today and again. M.H.

@muriel66 thanks so much for responding and for sharing your experiences. It’s been a very medically and psychologically tough day and I am grateful to hear from you. My husband and I estimate over 20 ICU stays in the last few years and I suspect we are estimating on the low side. I have adrenal insufficiency and am prone to infections so the pattern is sudden pneumonia, septic and adrenal shock. I go from okay to dreadfully ill in 20 minutes without warning symptoms. I carry an emergency kit with injectible medicines to help me get to the hospital without “crashing”. Adrenal insufficiency means I can’t live without hydrocortisone the same way a diabetic can’t live without insulin. It’s rare and not everyone knows how to treat it. Fortunately the nearest hospital knows what to do and I am very grateful for that. I guess I’m giving you some background to hopefully make it clearer. I’m tired today and had a more minor adrenal dip, requiring medication and rest. It always brings back images of the ICU to me. For example, I have small, hard to access veins which is a big problem. They have to get IV access fast and that isn’t easy. Many needle sticks then usually a central venous line, not an easy procedure for me. I’m usually delirious so memory is sketchy. My husband often acts as my backup memory, which helps. I am haunted sometimes by foggy memories of procedures. Although the staff is unfailingly kind, everything hurts so much. The shock itself hurts and my blood pressure is too low for any pain medication. I’m not sure where I’m going with this. It feels like an outpouring of various scary images, flashbacks and nightmares. I hope this is okay for you and anyone else who might read it. My husband often stays long days and nights with me with friends giving him some down time. I worry for him. It can’t be a pleasant sight plus we are both so afraid. He is strong and loving but I worry for him too. I’m so fortunate that he is in my life. I’ve been told I often ask for him while delirious despite the fact that he is right there. Now, I wake from nightmares and reach for him. I hope I am there for him as much as he is for me. I think my images persist as a way to try to come to terms with all that has happened. I’m still recovering from the most recent episode so I am still foggy and emotionally shaky. Your description of your experiences sound similar to mine. I’m sorry you have also struggled and continue to cope with all of it. I think I am mostly sad today. Maybe that is what has to be to cope. I guess it’s one of those uncertain days. I am very grateful for this forum and especially grateful to everyone who has responded to me including you, of course. I hope we can stay in touch. Best wishes, Rhoda

@muriel66, Top right of page. Hover mouse over your picture ID. Click on Account settings. You can select to receive email notifications, and to receive email when someone "likes" one of your posts.

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I hope this helps. Feel free to let us know if you need help.
Rosemary

@rckj Again it has taken a while for me to respond. Sorry. I think that today I have resolved the fact that I was not notified when you posted. It was easy to do, but for some reason I did not previously see the option to be notified. Thank you for describing your medical diagnosis and the experiences you are having you. There are several of your concerns to which I hope I can add helpful thoughts. Forgive me if I am repeating anything I have already said.

Intense fear was a primary response I had awaking from delirium/coma. It continued after I moved to another floor, as well as when I went to a transitional care system... and finally to home. My fear grows from not knowing if the day will be uneventful and from not knowing if my physical/emotional condition will be stable in the future. For you, fear might be repeatedly reactivated by the reality that your condition can quickly become critical and from the number of times you have been in the ICU.

Thus, my thoughts from my situation might not be helpful and excuse me, if this is the case. It has taken me two years to partially work-through fear about my health and future. With this fear, there is anxiety (and depression) for which I am treated with medication and counseling. It wasn't until last night that I heard myself say in a discussion that fear keeps me from serenity. For me, serenity is related to faith in God. Last night I said out-loud that am slowly growing in trust of God that no matter what happens, I can accept it.

Belief in God might not be the case your experience or that of anyone else who will read my post. Instead of God, it could be that you have a core belief about life to which you can appeal when you are 'down and out'. An example of a core belief is: Each day there is the promise of mini-joyful experiences. For you this might be your husband's deep love for you. Anticipating that your core belief will be affirmed during a day might give birth to or increase your sense of joy... or hope.

I know that it is a stretch to imagine joy, even hope! For most of my recovery, I have been regularly afraid that another 'shoe would fall'. This has been compounded by the fact that a second surgery at Mayo unexpectedly resulted in a second experience of septic shock. For the first time, I now reveal this: Just before my husband and I got in the car to travel the 8 hours to Mayo for that second surgery, I said "Let's take a selfie." I suggested this so that he would have a happy photo of us in case the second surgery resulted in septic shock and I died. Since I was so close to death the first time, I feared I could not survive a second time. Fear... always in the shadows... or pronounced in nightmares.

Then, a month ago I was scheduled to have the minor procedure to have the cataracts removed from my eyes. Though I knew there was not solid reason that this would be a risk for septic shock, I was afraid that I would lose my eyesight. Then, last week my husband I went to the North Shore to 'get away' so as to hopefully give me a lift from the deeper part of depression. We planned to snowshoe, but I was afraid that I had not recovered enough physically to do so. When we started down a very modest hill, I stopped and said I could not do it because I was afraid I would not be able to climb this hill on the way back to the car. Fear... Fear... controlling the day.

However, gradually I note that the positive moments which dispel fear are moments that are building. When I go to bed at night, I now look forward to two experiences... falling into God's love, a core belief I hope eventually will help me fall to sleep easily and will wipe away the bad dreams. The second is that in the morning I will wake to enjoy a cup of coffee! While recovering at Mayo, in transitional care, and in the initial weeks at home, all I had were a few sips... but, I kept the coffee-drinking in my daily regimen. Are there small, simple enjoyments that slip away when you are facing treatment, an emergency, or hospitalization? Can a joy be activated with the assistance of the medical community, your husband, a friend, and you?

Burdening my husband and fearing he would lose his health from caring for me, especially when he worked/traveled 10 hours, 5 days each week, was of concern for me. I did not feel guilt about burdening him, because I knew I greatly needed the care that the medical community trusted he would provide. However, I worried about him. Though his deep weariness was obvious to me, he was clear that he wanted to care for me. He said that he celebrated that he could do so, because in the first part of my experience in intensive care, he was so afraid I would die or would end up living in a care center because my heart or brain would not recover well.

I imagine that your husband and you have discussed your concern about burdening him. Perhaps he and you can list the reasons he and you are a team sharing the burden of care and that this makes your new life better than other possibilities. Perhaps this would help each of you continue to deal with sudden changes in your well-being and other hospitalizations, if that would occur. Maybe he and you could rely on a core belief that you were 'meant to be' a team in life, no matter what occurs.

I do not want to overload you with my ramblings. I am sorry if I have touched your suffering and sorrow in unhelpful ways. I am disappointed that I could not respond sooner, especially since you mentioned you were sad. One more thought that comes from my experience is that I have found that my sadness is deep grief... the realization that when the first critical event occurred, my life took a major turn away from what I was expecting. Then the second critical incident. As the two years of my new life are unfolding, I find the sadness, grief is lessening. This does not mean that I do not have emotional struggles. When I responded to you at the end of February, I had been diagnosed with Major Depression, and a "mood stabilizer" medication was added to the anti-depressent that I was already taking to the maximum allowable amount. The new life can be very tough, as you know.

In closing, I can say that one joy for today is that I met you within this 'Just Want to Talk' blog. May you be able to name at least one joy for today. M.H.

P.S. I snowshoed down the path I was sure I could not snowshoe up. The upward way was not as bad as I anticipated. I just did not look too far ahead to see what was ahead of me to climb. Maybe I could remember this when I am looking too far ahead while recovering. Instead, focus on the moment that is... one moment at a time.

@muriel66. I am @marield65 and had delirium the past 2 operations. Would you like to discuss this as no one else that I know has had this and cannot understand what I went through. It turned out to be a reaction to the opioids, DiLaudid was one, and it took them a few days to figure that out. In the meantime I was in a Delirium state and I remember where I was and what I was doing in the state of mind. I was not in the hospital but remember the things I did in my mind but not one thing that I remember while I was in the hospital. The doctor said that I was deliriously happy. I don’t remember anything about the hospital. I feel I lost a week of my life and the things I did while delirious was unbelievable. I had to either be tied to the bed or had a nurse by my bed 24 hrs because I kept trying to “escape “ from the hospital. Do you remember anything? Now I need more back surgery and am afraid it will happen again. Thank you
@marield65

@@marield65 and @muriel66 Today is the 10th day post back surgery. This time I knew more what might happen to me, so I recognized it when I started hallucinating. I could identify what was real and knew the things that appeared real but were not. I also heard and felt things that I know were not real. I was sent home with Hydroco/APAP, which I understand is hydrocodone and acetaminophen. Are you afraid of what you don't remember? I only ask because I am sitting here laughing at every episode I identify. I have some memories from all the way through, but I don't remember everything or expect to remember everything.
As usual I developed secondary issues which sent me on a 6 hour clinic visit today. At least I was not hospitalized. It all refers back to the opioids. They slow down your stools which is a blessing to anyone with chronic diarrhea; but, they can also constipate you very quickly. I was given a stool softener, but the memory lapses caused me to not take it correctly. I also, again, have nausea (get the bag ready type) and as a result am not eating or drinking enough.
When I started having cramps 2 days ago my DR ordered a muscle relaxant. I haven't quite figured what my poor colon must be thinking about everything that has been pushed through it over the last few weeks.
In your case, I would talk to all your physicians about your post surgical reactions and see if there are things to do to ease and/or accommodate your reactions. A few pre surgical sessions with a counselor may help also. Don't be afraid to ask for help.
Tonight I feel much better and have confidence that I will be able to walk with very little pain within a month. I appreciate everyone's thoughts and prayers while I have gone through this surgery. Your care, love and emotional support has really eased my fears, although not my pain. lol

Thank you very much for you reply. I should tell you this is Paul, Sharons husband. Sharon found this site and wrote for me as I am the one who is ill and she is the caregiver. I have found some great points in reading your post. This truly a journey that I never expected to experience. thank you once again. I would suggest that forget the fear and do not let it control your life. it is obvious that you are a believer as we are and would say to put it in gods hand and breathe.. When I was at my worst and the doctors wanted to remove lifesupport Sharon told god she needed help and put me in his hands.

Laci....There is one Physician who can help you. I would say you should consider turning to Him for help. His name is Jesus. Pray and tell Him in a personal way how you feel and just what you wrote here. There is no fancy way to pray. I talk to God every night and ask for His protection by His mighty Angels over my night and of course my doggies. Give it a try Laci. God created us and He alone knows just what is wrong in your body. I am praying for you as I type this. God Bless You.

For anyone who might be local, please consider joining us at our support group tonight from 6-7pm. See the following link for location and directions! Hope to see you there! https://connect.mayoclinic.org/newsfeed-post/support-group-tonight-3-19-from-6-7pm/

My husband had a quadruple bypass two weeks ago. He sleeps all day up like 10 minutes then falls asleep he does not want to walk outside to cold. He is very independent he does not ask me for anything. I do t know if I should stay home all day with him to try to keep his sprits up. I don’t want to nag him I feel guilty going out