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

@dawn_giacabazi, such helpful advice to Rhoda before she left for Mayo. @rckj thinking of you as you travel today. Rest well and all the best tomorrow.

@sacker, this may sound glib, but this experience will make you a better provider. I bet @andreab and @milindohope83 will have more to add to your message.

Until they join us, let's talk about where you're at today. You have identified that you have PICS. That's step 1 accomplished! You found this online forum to support you. Step 2 done! So now on to Step 3. Keep posting and let us accompany you as you walk this path of acceptance and healing.

You said "I am 45 years old and not ready to be one of my chronically ill pts." I get that. You're the person that helps, problem-solves, cures and so much more. By understanding what you're going through, how will this make you a more empathetic provider? You said you've become fearful, irritable and mean. How do you reframe your situation to be kinder to yourself?

Does this resonate or just sound glib? Be honest.

Sacker, Hi, Wow I totally get your frustration and anger, there should be a clearinghouse, somewhere folks suffering from PICUS can get answers on nutrition and oral supplements, because just upping calories will put on fat not functional muscle. After an ICU stay especially on a respirator muscles go into catabolic state and from what Ive read can continue in that state. And physical rehab, athletes have resources to measure their lean muscles and track their gains. Why are we not prescribed supplements geared to the needs of PICUS people, modern strength and endurance training like athletes have? My husband is 70 but before viral pneumonia he was very active and vital, now he doesn’t want people to see him in his weakened state. He has made improvements but they seem slow and he’s scared he will never get back close to what he has lost. The people on this forum are awesome and give moral support, and have given me great pointers and insights into what my husband is going through. I know we are not the only ones struggling. We have an appointment Friday with PICS Recovery Clinic at Vanderbilt I am praying they have answers and the physiologist is someone my husband feels comfortable confiding in. I’m sorry if I rambled but you were the first person that alluded to frustration and anger, I felt despite our almost 30 years difference in ages I get it.

@colleenyoung @dawn_giacabazi thank you both and everyone else for your good advice and kind wishes. I am at Mayo now and things have swung into action. Several possible answers and solutions! We will be here longer than we expected, at least through the beginning of next week. Excited, scared, hopeful. Everyone is actively searching for answers and a prevention plan. Such an amazing place! Thank you again and all my best wishes. Hope to continue to correspond. Rhoda.

I haven't seen anything here that sounds like what i have experienced. At 72 and after a long miserable perimenopause and menopause with horrible severe hot flashes...i am now getting them again only worse. Out of nowhere i will feel hot on my back chest and then all over. I get light headed and the heat in my chest & back becomes so hot and intense its unbearable and then on top of that i have a panic attack. I have ended up calling 911. I went on bio identical hormones but dr. afraid i will have a stroke (which still may happen with those hot flashes). I am now taking Gabapentin but that may ruin my kidneys. Anyone have anything like this that they could share with me? Thank you!

Hello @sacker . I apologize for the delay in my response and also want to thank you for joining this conversation and sharing your insights. I was away at a conference by the Society of Critical Care Medicine. I do a lot of work with many great people at that organization through the Thrive collaborative where we focus on helping people recover from critical illness to the very best of their capacity. I want to share some important links with you that I think you might find helpful. The first is from our Mayo Clinic Connect page and it is a quick overview of PICS - the active links within this blog will send you to the related page for more detailed information: https://connect.mayoclinic.org/page/pics/newsfeed/breaking-it-down-post-intensive-care-syndrome-wrap-up/

The other site I want to share is the Thrive site by SCCM. Explore this page as well, I am sure you will find helpful information: https://www.sccm.org/MyICUCare/THRIVE/Post-intensive-Care-Syndrome

There is a lot of information out there, but one of the most important things for you to know at this time is that you are not alone in feeling this way. While I was at the conference, I heard a very powerful statement given by one of the leading experts in this area Dr. Iwashyna. To paraphrase, he said: "Just because you are not who you were, doesn't mean you cannot become a new version working off of the many strengths that you have".

Over and over again we heard from experts and patients alike who shared and acknowledged that previous "normals" no longer exist after critical illness. At least in the short term. And this can be devastating to many people, especially if you have not been forewarned. I am hopeful that you will find this forum and the information that I shared with you helpful and healing. Please continue to reach out to everyone in this group - there is so much power behind these connections.

@colleenyoung and all it’s Rhoda back from a very rough ride. Mayo was as usual helpful, whirlwind and cold, as in physically cold. 50 below zero actual and two foot blizzard while we were there. Fortunately able to use tunnels. No definitive answer for stopping adrenal crises except updosing hydrocortisone when ill. They are looking for rare exotic illnesses which is scary. Testing continuing back home and sent into Mayo. Had a severe adverse reaction to MRI contrast dye (gadolinium) while there, another hospitalization. Sigh! Worse how ever when returned home. About 5 days back from Mayo couldn’t breathe, cyanotic, blue nails and lips. Oxygen saturation 83. Whoa! My home based physical therapist called husband and MD, fast track to ER and ICU. I was in denial, thinking asthma attack. Turns out to be large bilateral pulmonary embolisms with right cardiac “strain”. Enlarged heart, right side due to not enough lung serface to pull in oxygen. On Lovanox injections ( wonderful husband doing them twice a day) and Coumadin (blood thinners) basically forever. Will be just Coumadin when I get a therapeutic level, blood levels every day. Will take months to return to baseline with lots of help. Fortunate to have the help. Back home after 10 day hospitalization, 4 days in ICU. Still I am strangely numb and grumpy, mostly in my head because I figure other people shouldn’t have to put up with me. Home now a few days, don’t know what to feel just following medical advice. Coumadin is a hard drug to take, lots of food restrictions and have to be careful in general. Covered with gigantic bruises. I mean like grapefruit sized. I hate that everyone is now asking me if I’m safe at home with my wonderful husband. Oh well, that’s minor. Numbness bothers me, feel odd, I’ll am affectless but need to cry. Didn’t need another major life threatening illness. I feel like I’m living with internal time bombs. So physically and emotionally tired, any and all responses welcome, I feel bewildered. Hope everyone here is okay maybe even stable and well. Thanks to all in advance. Rhoda

Oh my goodness, @rckj what an ordeal. I can hardly imagine. I'm not surprised that you're grumpy and numb and not sure how to feel. You still have to recuperate. Be kind to yourself and give it time. Crying is okay too. Thank goodness for your husband. He sounds like a gem.
It is so tiresome to constantly need care. I know that you are physically and emotionally tired and you're pulling from reserves that are empty. But I wonder if it might give you pleasure and satisfaction to do something for someone - like your husband? Keep it super simple. Ask him to sit with you, take his hand and simply let him know how appreciated he is. I'm sure he knows that and no doubt you tell him. But look at it with a slightly different perspective. Instead of seeing as a position of vulnerability and needing him. Think of giving him a gift of appreciation from a position of strength. It's the "care" you can give him. Is that crazy?

@colleenyoung great to hear from you. Thanks for the TLC! My husband is amazing and the minute I heard your idea, I felt better. I can’t cook right now, we have help but it’s not the same. We do have a terrific Asian Fusion restaurant about 5 miles away and he loves sashimi. Ordered him what he likes and some Chinese noodles with protein for me, I’ve been getting the riot act from all medical personnel about eating more protein. Helper will pick up and set up and clean up. Probably in bed with a big bath towel as I’m still very weak. He doesn’t know yet, will know when it arrives. Set up the bedroom music system for his favorite music too. I feel much better, thank you so much. Suddenly energized and happier. I can actually do something that is not self centered and is for him and for us as a couple. Didn’t think I could feel happy right now but I do. My husband and I have been talking and holding hands throughout this but I think it was more his comforting me. You are so wise to have thought of what I can give him as a gift of appreciation. This was easy, haven’t needed anything but a phone and he will, I think, feel loved and taken care of by me. And I do feel stronger, more myself. Thank you so much and all my appreciation. Rhoda

Jubilation! It wasn't such a crazy idea after all. You're amazing, Rhoda. Enjoy your soiree!