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Posts (55)

Tue, Apr 2 7:55am · Post-Intensive Care Syndrome (PICS) - Let's talk in Intensive Care (ICU)

@rosemarya thanks for your response, I greatly appreciated it! I just got out of the hospital again, round 3? I don’t know I’ve lost track. Spiked a high fever and sepsis so another ICU stay then another 10 days. I am fortunate to have a strong support system including a wonderful Unitarian minister who visits with me. I’m Jewish and Unitarian my husband is Unitarian. Actually the minister is the person who married my husband and I, so she has special meaning to us! As usual, tired of the hospital although the hospital itself is terrific. They have had meetings for staff on how to treat my rare illness and everyone seems to know what to do. Unheard of in this day and time of diminishing resources! Sometimes I feel like my body has betrayed me as I used to be so healthy and strong but it is what it is, I just need to learn to cope with it and have the best life possible, for myself and my husband. I struggle too with what my husband has to go through. He keeps telling me that that’s part of his life as my husband but I can see that we are both stressed. Still working with the medical teams on ways to get more stable and minimize the need for hospitalization. Anyway, that’s the update. I keep wondering if they begin to sound all alike, although it’s different each time, somewhat. I’m so glad you have your wonderful husband too and congratulations on your upcoming anniversary. I hope all is well with you and hope I don’t always have to start a conversation with a hospital update! Thank you for your kindness and I treasure the long distance hand squeeze! Sending my caring and all my best wishes. Rhoda.

Thu, Mar 28 2:33am · Post-Intensive Care Syndrome (PICS) - Let's talk in Intensive Care (ICU)

@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!

Thu, Mar 28 2:01am · Post-Intensive Care Syndrome (PICS) - Let's talk in Intensive Care (ICU)

@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.

Mon, Mar 25 7:51am · Post-Intensive Care Syndrome (PICS) - Let's talk in Intensive Care (ICU)

@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.

Sat, Mar 23 5:57am · Post-Intensive Care Syndrome (PICS) - Let's talk in Intensive Care (ICU)

@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.

Fri, Mar 22 7:40pm · Post-Intensive Care Syndrome (PICS) - Let's talk in Intensive Care (ICU)

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

Fri, Mar 22 7:26pm · Post-Intensive Care Syndrome (PICS) - Let's talk in Intensive Care (ICU)

@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

Fri, Mar 22 5:38am · Post-Intensive Care Syndrome (PICS) - Let's talk in Intensive Care (ICU)

@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