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Care when coming home

9 years 1 month ago #38749 by Grey
Thanks for the response . My INS leaves a lot to be desired but that is an option Im thinking about . Just seems to me its not possible to take care of myself alone at first. Before my wife passed she was activity directory at a Christian Nursing home ,and I bacame friends with lots of folks there one of whom is now the Director ,I plan on getting together with her and discuss the possibility of gong there straight from the hospital.It would take another load off me for the first little while ,pluss Im scared to death of a problem occuring the first week or so and be stranded home alone . Just a couple days ago I was to have a complete bone scan and was injected with the tracer ,came home for about 3 hours then was to go back for the scan. My urines have been pretty clear but about 20 minutes prior to returning I passed one about 80% blood scared me bad but thought I will tell them at the hospital when we get there.A friend picked me up and we got 3 blocks from home and I broke out in a huge sweat,slight nasua,and very light headed, told him something was wrong ,get me there.Thats the last I remember till I woke up in an ER bed. It worked out and was ok but had I been home alone dont think I would have had time to even call 911,just a all pretty scary.. Doug

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9 years 1 month ago #38748 by GKLINE
I am going to recommend a lot of care. This surgery is big time stuff and I don't know how I would have done it without 16 hours of care the first week! The visiting nurse came every 3 days but that was not enough to help with the endless surprises that come up the first week.

I might recommend some transitional care at a nursing facility with a physical therapy dept. I am not talking about more than a couple of weeks. They offer great round the clock care and this will certainly take the pressure of of you to find a caregiver. AND it will also take the pressure of of you for your own health car for the first period.

Your insurance should also help out with this transitional care.

Just a thought.


Light a man a fire and he is warm for an evening.
Light a man ON fire and he's warm forever.

08/08/08...RC neo bladder
09/09/09...New Hip
New Man! [/size]

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9 years 1 month ago #38744 by Grey
Thanks for the reply. I havent gotten to a second opion yet as I wont really know all the details till this coming Fri. Havanna is just a stones throw away Im in Lincoln,used to go to the drag races a lot over there.Ive been into streetrods and hotroads forever,currently have a beautiful 55 Chevy that is reating in the garage
I have a brother that lives in Arlington Heights so Chicago may be an option,just kind of in limbo till Fri. And Dots care is my biggest concern at the moment . I did have an idea last nite dont know why it didnt occure to me before ,not like I have much on my mind at present . I have a married cousin in Springfield ,they live in the country and have a dog of their own. So emailed this am asking if they would be interested in keeping her for me till Im able to care for her,hopefully that will a solution to that worry. I can appriciate being the care giver I was for my wife when she had ovarian cance managed to care for her at home till the last week when she had to go into a hospic facility. More as it happens Doug

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9 years 1 month ago #38739 by eddiek

My wife, Cynthia, is also from a small town in central IL; Havana. She had her surgery at the University of Chicago in May, 2006. If you are interested in a second opinion, you might consider Dr. Gary Steinberg at UoC.

We stayed in Chicago for about five weeks following her surgery before returning home. We arranged for a visiting nurse to take care of her post surgical needs; the nurse would visit three times per week for about an hour.

I also learned how to take care of the surgical sight and would perform the duties of the nurse several times each day, such as, dressing changes. Cynthia has an Indiana diversion, so the care may be a little different.

The other thing to remember is that a radical cystecotomy is major surgery and it will take several weeks for you to return to normal. Several small meals every few hours will be better than three regular meals for several days once you're released from the hospital.

You will probably need help getting around until your strength returns. I'm not sure that "24/7" help would be required, but going it alone could be difficult.

You also need to remember Dot's care while you're recovering. We were fortunate to have our son care for our dogs while we were in Chicago.

Hope that your upcoming appointment goes well, please keep asking us questions, and let us know how things are going.

Ed K.

Edward J. Kinsella
American Bladder Cancer Society
Board of Directors - Secretary/Clerk

& Caregiver

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9 years 1 month ago #38738 by Grey
Thanks Sailor Man
I may have additional problems as I have had and currently have Malignate Melanomas and the Doc is concerned they may have matastised as well so maybe even more thrown in the mix.

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9 years 1 month ago #38737 by SailorMan
Most people that I know will suggest that you have someone with you for the first week or so. Sadly, lots of us bounce back to the hosp in the first week or so and it is sometimes pretty hard to move around and take care of yourself at first. personally, i was pretty able to do most things by myself from the beginning but i still was a little worried the first time that I was left alone which was a week or so afterward

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