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

@rosemarya and @colleenyoung hi Rosemary and Colleen. A bit scared right now. I have a congenital corneal problem called corneal dystrophy. I’ve had multiple laser surgeries as my corneas won’t heal on their own and can spontaneously tear and need repair. They have been ok for a while but today are showing signs of deterioration. Off to the corneal specialist. But I haven’t been on Coumadin for this problem before. Will tell ophthalmic surgeon today. Surgery wouldn’t be right away any way. But very anxious. Getting advice from the Coumadin/Warfarin team. Not much else to do except wait and see what they say. I seem to defy the unwritten rule of only one genetic disease at a time! This practice is really great and have saved my vision numerous times. Just really anxious. Hoping for the best for me and all of us.

Hi @rckj, I can imagine that you're anxious and scared about this new challenge. Thanks goodness you have an excellent team.

You might wish to talk with others in the Eye Conditions group: https://connect.mayoclinic.org/group/eye-conditions/
In particular, I think you might appreciate this discussion:
- Low Vision: Let's share about coping day to day https://connect.mayoclinic.org/discussion/low-vision-1/

There are few corneal dystrophy related discussions too.

@rosemarya Thank you for your kind words and thoughts. It feels comforting to know that other people understand. When faced with my own mortality I am forever changed. I will look at other conversations including depression, on this Mayo Connect. All of my ICU Staff were lovely. So I’m chalking it down to maybe knowing too much. The PA that sent me home misdiagnosed to die, I often wonder what purpose I still have here. If I didn’t make that decision to get a second opinion, I wouldn’t be here. I have so much anger for the PA that misdiagnosed me and it was neglect. I asked if the medication was causing my symptoms (Steven Johnson’s Syndrome), she said to keep taking it. It’s hard to have faith in a system that fails so often. I’m still trying to understand, and rid myself of the anger and confusion. It seems to come in waves. Thank you for your kind and thoughtful reply. -Kay

I understand your anger. Five years later, I still have anger that the ICU staff allowed a male stranger in my ICU room while I was in a coma bc he said was a pastor. He was not. They didn't ask my family. He was an intruder. I'm terrified of hospitals now. It was against JCAHO and I filed a complaint against the hospital. JCAHO agreed with me. Worse part I used to work for that very hospital! It was a huge violation. I'll never know what he may have done. So you have every right to feel angry. I tell everyone you gave to be own doctor. And you have beware of hospitals. You are not safe.

@rosemarya Thank you for your kind words and thoughts. It feels comforting to know that other people understand. When faced with my own mortality I am forever changed. I will look at other conversations including depression, on this Mayo Connect. All of my ICU Staff were lovely. So I’m chalking it down to maybe knowing too much. The PA that sent me home misdiagnosed to die, I often wonder what purpose I still have here. If I didn’t make that decision to get a second opinion, I wouldn’t be here. I have so much anger for the PA that misdiagnosed me and it was neglect. I asked if the medication was causing my symptoms (Steven Johnson’s Syndrome), she said to keep taking it. It’s hard to have faith in a system that fails so often. I’m still trying to understand, and rid myself of the anger and confusion. It seems to come in waves. Thank you for your kind and thoughtful reply. -Kay

@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 don't know if my story fits exactly with this post, but I have not met anyone else who can relate at least a little to what I deal with. My son was a previously healthy 6 month old baby when he went into multi-organ failure last summer. The cause remains unknown. He was at an excellent Children's Hospital and spent five weeks in the PICU (pediatric intensive care unit) then two months total in the hospital. Five weeks is a long time to live in the PICU. They called it the "fish bowl" because the walls are floor to ceiling glass and there is no privacy. Codes went off multiple times a day, and each time I wondered if someone was about to lose their child or baby as PICU staff went running (walking very fast) past our room. The flight for life helicopters landed multiple times a day on the landing pad above my son's room, bringing children in critical condition. Four of the friends we made last summer all lost their children. We spent precious time together, eating together, sharing our deepest concerns and most intense moments. My son came extremely close to death. His kidneys shut completely down, his cardiovascular system, liver, intestines, lungs...He was intubated for many weeks on CRRT (continual dialysis which is actually not even made for babies his age but saved his life). It was absolutely terrifying. I am grieving the death of my friends' children and don't know how to do that. When my son was discharged (9 surgeries, a colostomy, feeding tube and paralyzed foot later) it was surreal. No one in my small town can relate to the trauma we went through. We have been incredibly supported, but not having anyone who "gets" it has been hard. The hospital he was at does not have an online support system like this which I think would have been quite helpful. I fight fear all the time and am trying not to be paranoid for him. I think more studies are coming out which show that parents of PICU kids face traumatic stress...my son seems unscathed emotionally which is wonderful! I however am struggling!

I don't know if my story fits exactly with this post, but I have not met anyone else who can relate at least a little to what I deal with. My son was a previously healthy 6 month old baby when he went into multi-organ failure last summer. The cause remains unknown. He was at an excellent Children's Hospital and spent five weeks in the PICU (pediatric intensive care unit) then two months total in the hospital. Five weeks is a long time to live in the PICU. They called it the "fish bowl" because the walls are floor to ceiling glass and there is no privacy. Codes went off multiple times a day, and each time I wondered if someone was about to lose their child or baby as PICU staff went running (walking very fast) past our room. The flight for life helicopters landed multiple times a day on the landing pad above my son's room, bringing children in critical condition. Four of the friends we made last summer all lost their children. We spent precious time together, eating together, sharing our deepest concerns and most intense moments. My son came extremely close to death. His kidneys shut completely down, his cardiovascular system, liver, intestines, lungs...He was intubated for many weeks on CRRT (continual dialysis which is actually not even made for babies his age but saved his life). It was absolutely terrifying. I am grieving the death of my friends' children and don't know how to do that. When my son was discharged (9 surgeries, a colostomy, feeding tube and paralyzed foot later) it was surreal. No one in my small town can relate to the trauma we went through. We have been incredibly supported, but not having anyone who "gets" it has been hard. The hospital he was at does not have an online support system like this which I think would have been quite helpful. I fight fear all the time and am trying not to be paranoid for him. I think more studies are coming out which show that parents of PICU kids face traumatic stress...my son seems unscathed emotionally which is wonderful! I however am struggling!

I worked for PICU physicians in an administrative capacity for years, so I know a little bit of what you're going thru. I often think my work helped me later me when I became ill. Yes, people do not realize what a toll prolonged illness takes on a family. People tend to think 'put it behind you' , but there is no way that can happen. My advice, to what has been helpful for me, is find a good therapist. I try to go every two weeks. I feel I probably will go the rest of my life. My family even got tired of hearing me talk about my ordeal. Physicians often don't understand. Medication didn't help me. It may help others. I had a couple of therapists who I didn't like at all, move on if you get a bad feeling or you don't click. I find it helpful to do charity work. But I also had to walk away from former friends who just didn't understand my ordeal. Our lives are before the ordeal and after ordeal. You have the added sorrow of mourning the passing of friends' childrens. Please try therapy. Keep a journal. I jot down things, just for my eyes. So when I go to therapy, I have points to talk about.
How is your child now?