After reading Sat. 'good news-bad news' and that Jeanne was in a lot of pain, I was most anxious for Sunday's report. When there was none, I found that pretty scary. But tonight a new post. Still the good news-bad news, and too much pain. I just hate this so much. Here's the post if you didn't check already.... Days 3 and 4- Post Surgery Written 2 hours ago Good Things: *Minimal swelling in her extremities *NG tube out (later replaced due to feeling nauseas- hope it is removed in the next day or so) *Kidneys are functioning well-doesn't need kidney team any more *Dangled legs over edge of the bed and sat in recliner chair yesterday and today *Immunology team feels confident that her swelling is not the effect of capillary leak syndrome at this time *Doctors and nurses have been WONDERFUL!!! *We are now staying at the Rossi House located inside the U of I Hospital and feel lucky to get to stay so close to Mom. Working on: *Getting lungs working better, trying some lung exercises *Resting/Sleeping for longer periods *Pain control *Regulating medications that are causing confusion *Getting out of ICU *Getting up and walking in the hallway OA....you are not forgotten in my prayers by any means. I know you're also going thru a difficult time and I hope you will give updates also. Have you started the chemo or still healing from the surgery before doing so? Please know you are in my thoughts daily as well as Jeanne is. (so sweet of her to send you that Angel Feather.) Much love to both Jeanne and you, you're part of our little family here and very important to us. hugs, Karen

Please add me,I'm waiting on a kidney transplant. Kidney failure, the gift thsat keeps on giving. My latest problems are too-high phosphorous count, arthritis in both knees, and I had a seizure last saturday. I was totally awake, eyes open, able to speak. But my legs and left arm were twitching uncontrollably.

Please excuse the hijack anitamo. Those who have been through this know. You "handle" it until something pushes a button, which anitamo's post evidently did for me, especially Pal's link to the soft caps as I was talking about that with my sister the other day. I so appreciate the support, ladies. I'm super private as I believe it's impolite really to burden others. Everyone has problems, tragedies and crises in the course of a lifetime -- no one needs anyone else's. I believe in sharing the happy stuff -- I put up 2 favorite recipes on a new thread mtn started. Both really delicious. I've always had a very high stress tolerance and have an ability to thread my way through chaos. But losing younger siblings is a killer even when you're not close. My next younger brother passed suddenly 4 years ago. Now my sister is sliding away. It's like standing on a large island that's your life/family history and watch huge chunks fall off. I don't mind it changing me. I always have been lucky and I'm blessed in so many ways in this life. But my sister has had much to overcome and not a great deal of happiness. The idea that she must go so early and with so much pain and disability seems really cruel. Enough. Thank you all for your good thoughts and prayers. Big hugs to you. I so appreciate the empathy and support. It really helps.

One other perspective fwiw: I have an elderly parent with Alzheimers and we learned the hard way that hospitalization and anesthesia (as well as pain and/or pain meds) can precipitate a condition called delirium - and it's especially common among the elderly and those with dementia. My father was living independently, with a lot of personal care help etc, when he had a minor medical incident. After a day in the hospital he basically shut down, physically and mentally, in what we later realized were classic signs of delirium. It was a six week ordeal, life and death, much of it restrained and/or semi-conscious -- even though there was literally nothing wrong with him physically. He ultimately survived, but never returned to anywhere near his baseline. He was living in a continuing care community at the time and so we moved him to the skilled nursing wing instead of his own apartment. 18 months later, he's now under hospice care. I'm sure that he wouldn't have declined so dramatically and so quickly if it weren't for this episode. There's nothing we could have done differently; the original ER trip was necessitated by an anaphylactic reaction. He had an Epipen but the only prudent thing was a quick trip to the hospital, which had happened plenty of times in the past. Now, having done a lot of reading on delirium and dementia, I would avoid elective procedures and anesthesia with someone who has dementia. One other thought -- we got great help and guidance from the palliative care specialists at the hospital throughout this ordeal. The regular doctors and nurses were terrific, but they were focused on fixing the problem, such as it was, rather than ensuring his quality of life.