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

@martha7979 where in Australia are you?

Murial, my sincere thanks for your reply. My ICU stay was also related to a routine medical procedure....having a baby. Just after I was moved to the recovery room, my blood pressure plummeted and I was rushed to the shock trauma ICU where I had a massive blood transfusion of over 75 units of blood. I was in a coma on a ventilator for a week and then I woke up to a whole new reality. At first this new reality was not so bad...I think because I had this incredible outpouring of support...my family actively shared my story on social media and people all over the world prayed for me. My family and I were showered with support, gifts, and even money to cover our medical expenses. I guess I saw the silver lining before I saw the clouds.

I am coming up on the one year mark and I expected it would be a wonderful celebration of life...but I am surprised that I am actually a mental and emotional mess. I really identified with what you said...."I had lost life as it had previously been" and I guess I must grieve that as I would have to grieve the loss of someone close to me.

I would be so grateful for any insight you have about healing your inner life...I really want to heal!

@amandacgrow
Hello, Amanda.
It is likely that you have little time to care for yourself, while raising young children and upholding employment. In response to your interest in ways to heal the inner-self, I tell my story. Please do not take my actions for inward healing as prescriptive, as expectation, as imposition!

To heal my inners sorrow and fear, I needed psychological care from a licensed psychologist. Though at times, I did not feel he fully understood me, it was a tremendous benefit to talk weekly with a professional, compassionate caregiver. If you were to enlist this type of care for yourself, I suggest you see someone who not only understand the inner affects of physical trauma, but also someone who acknowledges the importance of grieving. The referral to see a psychologist was made by my primary care physician in my hometown.

I need spiritual care. A hospital chaplain began that care for me, and now I am fed by being with other believers in my hometown. Spiritual care swells through the love of the congregation, who accepted the 'new me' without placing expectations on me. Though the pastor, where I worship, seems unable to accept the limitations of my 'new life', she is supportive.

I also post spiritual statements in the house for me to see and quietly repeat. These remind me of God's divine presence and strength. It is by searching God for 'the new life' God gave me, that joy slowly grows within me. I now feel like I am on a treasure hunt with God, since I now know I cannot control life. Sudden severe septic shock clearly demonstrated that to me! Anyway, my previous attempts to control life were never satisfying.

I also practice a new mental skill for me. For a while, it was difficult to do, but has become easier over time. It is the mindset of 'living in the moment'. When I am overwhelmed or agitated, I remind myself to focus only on the moment or only on the day I am experiencing. Mayo Clinic has resources that help to understand and to encourage 'mindfulness'. Perhaps Annie Johnson can give you a link to resources. It is by 'living in the moment' that joy slowly returns to your heart and mind.

There are several other possibilities, but I do not want to overwhelm you. Again, the steps I take were ones I need. Over time, I hope you will be able to tell the practices that will assist you to heal inwardly, Amanda. Let's stay in touch. I am available to support you.

May a sense of inner-peace arise within you, even if for only a moment, as you live today.
Muriel

I am in Townsville, North Queensland. I am considering contacting the SW Dept as my husband has had three admissions to ICU. I am concerned about some of his over reactions to specific events eg sudden unexpected anxiety, sudden noises and lability that were never an issue prior. PICS was not mentioned at any stage. It all makes sense now. I would be happy to provide support for others given our experiences.

@muriel66 Thank you for your beautiful messages. I have read the messages you sent already many times...they carry so much meaning because I feel that you understand things that few others do. Last night, I read what you had written yesterday out loud to my husband. When I turned to look at him after I had finished, I saw that he had a tear running down his face. He said, "I have not known how to help you." We both feel such gratitude for your kindness in reaching out to me to give me hope for the road ahead.

I have just started seeing a professional counselor (today was my first appointment). I was very grateful that she talked to me about the process of grieving. I think she will be a good fit as a counselor, and I will be looking forward to our future appointments.

I am also grateful for your insight on spiritual healing. The depression I have been facing since mid November has made it difficult for me to feel God's spirit in the same way that I used to. I used to regularly seek God's guidance for what I could do for others. I held a leadership position in my church (I supervised all of the children's sunday school and activities). I was released from this calling just after I came home from the hospital and I have had a hard time understanding where I fit in now. I am no longer one of the people in charge, and that has been a major adjustment for me. I used to be the one who served others, then over the last year I have become the one being served. I so appreciate your insight into the very personal experience of spiritual growth, healing, and joy. I think in the busyness of my former church life, I may have been missing some of the spiritual power that perhaps I can access now, in my quieter life. I also look forward to having a "treasure hunt" with God to try to understand the purpose of my new life.

I am holding fast to the quote you sent: "The deeper that sorrow carves into your being, the more joy you can contain." I have hope that someday I will feel peace and joy in the places that now feel hollow and sad. The important thing is...thanks to your incredibly insightful messages...I have HOPE.

Thank you. Your words have meant more than you will ever know.

Amanda

@muriel66 Thank you for your beautiful messages. I have read the messages you sent already many times...they carry so much meaning because I feel that you understand things that few others do. Last night, I read what you had written yesterday out loud to my husband. When I turned to look at him after I had finished, I saw that he had a tear running down his face. He said, "I have not known how to help you." We both feel such gratitude for your kindness in reaching out to me to give me hope for the road ahead.

I have just started seeing a professional counselor (today was my first appointment). I was very grateful that she talked to me about the process of grieving. I think she will be a good fit as a counselor, and I will be looking forward to our future appointments.

I am also grateful for your insight on spiritual healing. The depression I have been facing since mid November has made it difficult for me to feel God's spirit in the same way that I used to. I used to regularly seek God's guidance for what I could do for others. I held a leadership position in my church (I supervised all of the children's sunday school and activities). I was released from this calling just after I came home from the hospital and I have had a hard time understanding where I fit in now. I am no longer one of the people in charge, and that has been a major adjustment for me. I used to be the one who served others, then over the last year I have become the one being served. I so appreciate your insight into the very personal experience of spiritual growth, healing, and joy. I think in the busyness of my former church life, I may have been missing some of the spiritual power that perhaps I can access now, in my quieter life. I also look forward to having a "treasure hunt" with God to try to understand the purpose of my new life.

I am holding fast to the quote you sent: "The deeper that sorrow carves into your being, the more joy you can contain." I have hope that someday I will feel peace and joy in the places that now feel hollow and sad. The important thing is...thanks to your incredibly insightful messages...I have HOPE.

Thank you. Your words have meant more than you will ever know.

Amanda

@martha7979 I have a couple of colleagues that I work with through the Society of Critical Care Medicine who focus much of their professional work on post-ICU healing and support. They are located Adelaide and Melbourne which appear to be quite a distance from you. But if you would like to connect with them to start a conversation I would be more than happy to give you their contact information!

@muriel66 Thank you for your beautiful messages. I have read the messages you sent already many times...they carry so much meaning because I feel that you understand things that few others do. Last night, I read what you had written yesterday out loud to my husband. When I turned to look at him after I had finished, I saw that he had a tear running down his face. He said, "I have not known how to help you." We both feel such gratitude for your kindness in reaching out to me to give me hope for the road ahead.

I have just started seeing a professional counselor (today was my first appointment). I was very grateful that she talked to me about the process of grieving. I think she will be a good fit as a counselor, and I will be looking forward to our future appointments.

I am also grateful for your insight on spiritual healing. The depression I have been facing since mid November has made it difficult for me to feel God's spirit in the same way that I used to. I used to regularly seek God's guidance for what I could do for others. I held a leadership position in my church (I supervised all of the children's sunday school and activities). I was released from this calling just after I came home from the hospital and I have had a hard time understanding where I fit in now. I am no longer one of the people in charge, and that has been a major adjustment for me. I used to be the one who served others, then over the last year I have become the one being served. I so appreciate your insight into the very personal experience of spiritual growth, healing, and joy. I think in the busyness of my former church life, I may have been missing some of the spiritual power that perhaps I can access now, in my quieter life. I also look forward to having a "treasure hunt" with God to try to understand the purpose of my new life.

I am holding fast to the quote you sent: "The deeper that sorrow carves into your being, the more joy you can contain." I have hope that someday I will feel peace and joy in the places that now feel hollow and sad. The important thing is...thanks to your incredibly insightful messages...I have HOPE.

Thank you. Your words have meant more than you will ever know.

Amanda

December 21, 2018 my husband was admitted to the hospital with viral pneumonia, before this he was a vital active 70 year old man. He enjoyed golf, painting and playing his guitar and he did all our household and lawn maintenance. We were very active in our teenage grandchildrens lives and this kept us very busy. He has had CKD for about 20 years and with the help of some great nephrologist at Vanderbilt he has been mostly stable.
Sorry I digress, two days after entering the hospital he was coughing so hard one of his lungs collapsed and he had to be intubated and was put into the ICU. He did not tolerate the breathing tube and kept struggling and trying to pull it out so the sedated him heavily with fentanyl, propanol and Ativan he was sedated for five days and couldn’t be weaned from the intubation, every time they tried his blood pressure would shoot up to over 230/110. I elected to have a tracheostomy done to get the breathing tube taken out. He was taken off the heavy sedation and we were transferred to a critical pulmonary recovery hospital to wean him from the respirator and remove the trach. Their main goal was to his respiratory health with minor attention to physical rehab. During the coming out of the sedation, which took about a week to fully get free of the effects, he had hallucinations and delusional episodes that were so frightening to me but he only vaguely remembers them now. When he woke up so to speak he could barely lift his left arm and couldn’t lift his right arm at all. He was so weak he was not able to turn over or lift his head. He was able to wean from the respirator and have his trach removed and occupational and physical therapy at an inpatient critical rehab hospital, has given him back the use of his arms, legs and hands. He remains so weak being up an active about two hours at a time exhausts him and he lost 23 lbs and most of that was lean body mass or muscle. His appetite is not good and we have to do 4 or 5 smaller meals with oral supplement shakes, to keep him from losing more weight. He is doing home health for physical and occupational therapy. He is grieving his loss of independence and how much he has to depend on me for the smallest of things he took for granted, he cries easily the only time I’ve ever seen him cry was at his Moms funeral. He is able to be up doing exercises or eating about 2 to 21/2 hours before he needs to lay down. We have been given no nutritional advice, no advice on how to combat the debilitating weakness and the brain fog he is experiencing. I’ve searched the web and cobbled together some things that could help and I know would do no harm. I found a Post ICU Recovery Clinic ran by Vanderbilt and we have an appointment with them. Does anyone have any resources you could share with us? Soryy this is so long