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Post-Intensive Care Syndrome (PICS) - Let's talk
Intensive Care (ICU) | Last Active: Sep 16 7:52pm | Replies (609)Comment receiving replies
@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
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@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.
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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?