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

@colleenyoung definitely not a crazy idea! Thank you for everything! Rhoda

@colleenyoung thanks again. Dinner and music went beautifully. He was surprised and we both were happy and peaceful for the first time in a long time. We both are much calmer and more ourselves and it is lasting. Thank you for helping us get our lives back on track. I know there will be more hard times but I won’t ever forget how amazing this was and that I can, at other times like this, do something to make it better. You are wonderful and I can’t thank you enough. Rhoda.

@rckj
Thanks for sharing your update. You really got more than you had anticipated, even the 'cold' weather was unexpected. I am thankful that you are home now. I realize that the one step at a time phase is a real drudgery. I send you my hopes and prayers that the steps keep on moving on a level path.

I am all in favor of crying, too. Sad tears, frustrated tears, confused tears, and even an occasional happy tear that can will creep in now and then. Small moments of hope and happiness are worth looking for. I decided to write them down, so I could be reminded of them. My intent was to find one everyday. However, as time passed and I began looking, I found more and more 'blessing' moments especially in the tiny things that occurred. If you need a way get thru the drudgery, I offer keeping a blessing journal or a progress journal as a posibile diversion.

I love Colleen's crazy idea! I was teary eyed as I read about your experience. You are a blessing, by being you. Your energy is powerful.

@rosemarya so happy to hear from you. It’s been a rough ride, scary, but I am still numb. Need to cry, but it feels “stuck”. Colleen’s (@colleenyoung) idea made a huge difference in my husband and my life. It felt like returning to normal for a bit and enjoying happiness with each other. We are still lighter and happier than we were, which helps so much. Thank you for what you said about being a blessing and having powerful energy. It feels like ,with all of this, I forgot my strength. Running ahead with Colleen’s idea was like life flowing through my veins again! Thanks Colleen!!! Thank you too Rosemary! I have a long recovery road ahead and the new risks and medications will be lifelong. But, I am alive! It was a close call. Scared a bit as I say this right now but I hope for a lot more time ahead with my husband, my family and friends. I hope so with all my heart. Thank you both. All my best, Rhoda.

@rosemarya @colleenyoung I haven’t lost the good feelings of what my husband and I created, with your help, but I’m afraid this is round two of this episode. In ICU with sepsis of unknown cause and adrenal shock, unstable Coumadin levels. I am still quite ill so hope this is coherent. It’s 3 AM, EST, wakeful and ill. High dose antibiotics, supportive measures, etc. You know what it is like. I’m scared, sent husband home to get some rest, I’m reasonably stable, I think. Getting lots of TLC from staff but can’t help staring at all the emergency measures around me, especially intubation tray. So emotionally tired but primarily scared. I feel like my body is betraying me. I used to be so physically strong, worked out every day. Maybe I thought I was invincible. Seems silly now as none of us are without vulnerability. Trying to keep reviewing in my mind the wonderful dinner and music night with my husband and all your support. Will hang on, somehow. Life, my husband and I need each other. All my best, Rhoda.

Thanks for sharing. Though I did spend 2 nights in ICU and had a really bad experience due to th particular nurse assigned to me, I did come home and now it's almost 4 years since I was there.

I do pray you are improved soon. AND yes, sometimes it is difficult to sleep in hospitals.

@eileena thank you for your support. I really appreciate it. Been in ICU quite a bit due to chronic condition but have gotten good care. Sorry you had a bad experience. Thanks again for your good wishes on this very sleepless night!

@rckj,
I just got up and saw your message. I have been thinking about you during the last couple days, but in my concern about interrupting your recent happy moments, I hesitated. You have presented a very clear picture of what it feels like to be surrounded by all of the strange medical equipment and devices. I used to feel that they were hard, cold, and artificial, but they were essential for treating me. As I lay there looking at them, I also used to grieve over the way I used to be. I think that you are not alone in your fears and your feelings. You are not being silly; you are being human.
Rhonda, I used to enjoy, even look forward to visits by the hospital chaplain. I don't know what your spititual background is, or if you have any - that is not my intent to discuss. Have you looked into whether there is someone on staff (spiritual or counseler) who might be able to visit with you. My chaplain mostly listened to my fears and my concerns without any judgement. Just having someone to care, to listen and to hold my hand was a big help.

You and your husband share a very special love. I am happy for you. My husband and I will be celebrating 44 years together this year. During my illness, I struggled with my feelings about what I 'was putting him through'. He would always take my hand and tell me that this was the 'In sickness and health" part of our marriage vows. And I knew that I would do the very same thing for him if roles were reversed.

I hope your days get better for you as the medications and the doctors work toward a better life for you. I am reaching across the miles wiht a gentle hand squeeze.
Rosemary

In 2014 I was became suddenly ill with H1N1 flu and double pneumonia and very high fever. My husband took me to the doctor who called an ambulance. I lost consciousness on the way to the hospital and I didn't wake up for four weeks. I was admitted to ICU critically ill. I was in a coma for four weeks, had a tracheostomy for about 6 weeks, had many complications including sepsis, pulmonary embolism, kidney failure and dialysis, blood transfusions, shocked twice, the organ donation people were called and my family were called to say goodbye to me. I was paralyzed in all four limbs, unknown reasons. Incontinent. My husband was asked to sign a DNR but he refused. I was 62 and had been previously healthy. I was a non smoker, non drinker. A hiker, an amateur wildlife photographer, Girl Scout volunteer, and had recently retired. I was hospitalized for 55 days, five weeks in ICU, then PCU which was pure terror (they were horrid), and then inpatient rehab. I had many kind nurses, but some unkind experiences and those are ones that haunt me. On ICU, the nurses allowed a strange man off the street in my room bc he said was a pastor (he wasn't). They didn't ask my family. I'm haunted that he was allowed in my room and violated my privacy. My first memory when I woke up from the coma was seeing myself naked from the waist down. He was a friend of friend but had no business in my room. He was not on the list approved by my family for visitors. I no longer speak to this friend. AND HE IS NOT A PASTOR!! I do not know him!! It's a violation of JCAHO!!! On ICU and PCU I had my commucation writing board taken away from me. I had a trache and couldn't speak and I was paralyzed and couldn't ring for the nurse. It was terrifying. No wonder I have PTSD or PICS. I'm convinced they would have killed me eventually. My daughter was livid and complained all the way to the VPs. One nurse was fired. The VPs were shocked when they saw how ill I was. The nurse told them I was being difficult and demanding, then they saw I couldn't speak and was paralyzed. I couldn't even roll over on my own. What shocks me today is that my doctors haven't even heard of PICS. I have a liberal arts degree. How can I know more about that than them ?! I'm about 85% recovered now. But they call me a liar. They try to tell me to forget about it. I've been seeing a therapist since my discharge. I have sleep issues, I don't want to alone. I can't sleep. I'm always back in ICU. I still cry. My life changed. My friends changed. Many of my friends turned their back on me after my discharge. It has taken me a long time to get my life back together. They expected me to jump back in and do my volunteer work. When I couldn't, I was excluded. That was so hurtful. It's true about finding out who your true friends are.

I had a critical illness in 2014 and was diagnosed with PTSD. I found my own therapist also since no one in hometown including my ICU doctors have heard of PICS. But after a one false start with a therapist who tried to convert me to her religion!! I landed with a therapist who treats mainly sexual assault survivals. For me, it seems to be a good fit. Trauma is trauma. Meds don't do well for me either and if I felt the need for them my PCP would help there. My therapist and I have been navigating this trauma fairly well. I get really frustrated with the medical community in general who don't seem to recognize PICS. I talked with the ICU doctor who treated me who didn't believe PICS was real. He told me I just needed to forget about about my ICU experience. My husband was with me and he spoke up and said he is a Vietnam vet and said he has PTSD. He told the doctor that PTSD is very real. Hubby said it has taken him 50 years to have a peaceful sleep. The doctor shut up then. Then I said I wanted to talk to the residents, or nurses about my ICU experience and he said my experience was of no value. He was an ass.