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Mar 8, 2018 · Post-Intensive Care Syndrome (PICS) - Let's talk in Intensive Care (ICU)

@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.

Feb 22, 2018 · Post-Intensive Care Syndrome (PICS) - Let's talk in Intensive Care (ICU)

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.

Feb 8, 2018 · Post-Intensive Care Syndrome (PICS) - Let's talk in Intensive Care (ICU)

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.

Jan 29, 2018 · Post-Intensive Care Syndrome (PICS) - Let's talk in Intensive Care (ICU)

Almost two years after suffering severe septic shock and nine months after suffering septic shock, both because of the way my body responds to surgery, I again am reading about PICS. I continue to face struggles that affect my days. I finally am writing on this page. I wasn’t able to write in the diary that was given to me while in and after I left Mayo intensive care (and went to a room on a different floor). My de-conditioning, my decreased cognitive ability, my immense fatigue, my emotional upset, and my schedule of very helpful medical care… such as dialysis, physical therapy, services entering the room… left me not wanting to do one more thing (not to mention that my physical de-conditioning meant that for a period of time, my hands could not write). I did pray almost continually, listened to all who provided me care, tried to eat, etc.. But my greatest expenditure of energy likely was to eliminate body-waste successfully and regularly; once the bladder catheter and anal “garter snake” (my expression) were removed. Ha, ha!

Almost two years after my 2016 hospitalization, I again am diagnosed with moderate major depression. And, I have sluggish cognitive ability. Because I again am at a point of accepting my emotional-mental state, and my fatigue, I hopefully will post regularly on this site. It helps me when I express myself in writing. Today started as one of my more difficult days. I awoke five hours ago and still feel like I am mostly asleep. Possibly this is because of a change in medication for the depression. However, the change occurred before last week when I gained more energy and even experienced happiness. (Note: I always am thankful… thankful for excellent, insightful, kind, inspirational, steadfast care from the entire Mayo personnel; from my husband, sons, friends, neighbors… and always thankful God’s peaceful presence and amazing wisdom!)

Though my depression was less of a fog last week, today the heavy weight returned to my mind and body. I see a local psychologist and last week he cautioned me that this could happen. Writing about the way I feel is helpful, so I will give writing at this site another shot. Also helpful is reading and re-reading the Mayo online information about PICS. I did that earlier today and was reminded that the way I am today (physically, mentally, and emotionally) aligns with PICS. I also am reminded that I will continue to recover as fully as is possible…thankfully! Today is sunny and now it is a little bit warmer in northwestern Minnesota, so I am going outside. I hope that whoever reads this, has as healthy a day as possible. M.H.

Jan 29, 2018 · ICU diaries - how do they help? in Post Intensive Care Syndrome (PICS)

Perhaps others who receive a diary would like to know that I wish my experience had been recorded while it was happening. Later they might also wish there was a record in the diary. While I was in Intensive Care, I was unresponsive for seven of the nine or ten days; and only have three or four very brief memories once I became somewhat alert. Perhaps my family received a diary but did not have the emotional-mental energy to create a record because of concern about the critical nature of my condition. When I moved to a room on another floor, I did not have the mental and physical ability to write in the diary. Even though my story is unrecorded, I clearly know that I received wonderful, life-giving care from all of the medical and other personnel at Mayo Methodist Hospital. I am forever thankful.

Aug 29, 2017 · Post-Intensive Care Syndrome (PICS) - Let's talk in Intensive Care (ICU)

For the past four days, I have felt more uplifted. This might be the case because I have been successful in developing routine, though I have more to do to make this truly effective for physical and emotional recovery from my health issues. I am satisfied with small steps and am thankful. Even though my health issues have been difficult while at Mayo Methodist Hospital and Mayo Clinic, I actually feel very positive about my experiences there because of the compassionate and professional employees from each Mayo department. Being part of a worshipping community where I live is also helpful.

Aug 17, 2017 · Post-Intensive Care Syndrome (PICS) - Let's talk in Intensive Care (ICU)

Thank you, Rosemary. Your suggestions assist me. After the first experience of septic shock, I grieved. After the second experience, I have anger and lethargy. The stress relievers you mention are ones I utilize. When I was at Mayo in 2017, I was asked in occupational therapy to list all the ways to nourish well-being.
The hardest part for me is accepting my limitations. Because I was a very motivated person prior to two experiences of septic shock, it is difficult for me to accept my weariness. I feel as though I am in an empty waiting room for an endless amount of time. I do make a point of seeing weekly each of my closest friends. My husband is the best daily companion in this journey.

Aug 6, 2017 · Post-Intensive Care Syndrome (PICS) - Let's talk in Intensive Care (ICU)

I have again entered this site because of ongoing mental and emotional responses to suffering severe septic shock after surgery in March 2016; and septic shock after surgery in April 2017. My 2016 Mayo hospital summary indicates i experienced metabolic encephalopathy.

I wonder if my mental/emotional experiences are related to septic shock and/or to post-intensive care syndrome. I have read that ‘septic encephalopathy’ has a ‘long-lasting cognitive and depressive disturbances in patients after the sepsis resolves’.

I have heightened depression and heightened anxiety while recovering. For a year I saw and now continue to see a psychologist. The psychologist is very insightful, but I am not sure he is educated in the affects of severe septic shock on the brain and in post-intensive care syndrome. Thus, I wonder if this website can provide me with additional insights.

Basically, I am having difficulty adjusting to changes in my general sense of well-being since March 2016. Recovery was complicated by the reality that the severe septic shock resulted in my sudden retirement, since my physical recovery is extensive. My general well-being also has been affected
by the second experience of septic shock.

M.H.