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Author Topic: Information being given  (Read 2299 times)
kitkatz
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« on: December 24, 2014, 05:50:13 PM »

When I first started on this adventure called dialysis I kept asking my doctors and nurses for information. Written information, a book or anything to help me cope with this new disease and condition. I was beginning to think the hospital had nothing to give me or was hiding information from me.  I wrote the nurses and doctors a letter stating why I needed information and why I wanted to share in my care.  I ended up on the phone with member services and they got me in touch with someone who asked: "Didn't you receive a dialysis welcome packet from someone?" Well obviously not or I would not be on the phone with you crying to get some information.   So they sent someone over quickly with the dialysis welcome packet that had diet info, hospital in for, a video with overly cheerful people on dialysis  in it, and a book. The book was title Living on Dialysis or some such thing.  I read the entire thing.  It was my dialysis bible in those beginning days.  In 1996, the internet was just getting started so site such as IHD.com were not readily available. 

I just think that getting some information to a patient in a timely manner should not be very difficult for a large hospital. I should not have had to beg and cry for it.
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lifenotonthelist.com

Ivanova: "Old Egyptian blessing: May God stand between you and harm in all the empty places you must walk." Babylon 5

Remember your present situation is not your final destination.

Take it one day, one hour, one minute, one second at a time.

"If we don't find a way out of this soon, I'm gonna lose it. Lose it... It means go crazy, nuts, insane, bonzo, no longer in possession of ones faculties, three fries short of a Happy Meal, wacko!" Jack O'Neill - SG-1
chuckdims
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« Reply #1 on: December 24, 2014, 09:15:36 PM »

I got a welcome packet.  Once I saw someone on dialysis with a fake smile with a quote bubble that said, "Dialysis is not a death sentence, it's a life sentence!," I stopped reading.
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1986 - Born w/ Deformed Ureters
1989 - Bilateral Reimplantation of Ureters (Emory University -- Atlanta, GA USA)
2004 - Reduced Kidney Function Noted on Bloodwork, Kidney Biopsy Performed, Diagnosed w/ Stage III FSGS
2012 - AV Fistula Placed (University of Kansas -- Kansas City, KS USA)
2013 - Started In-Center Hemodialysis (September)
2014 - Started Home Hemodialysis on NxStage (July)
cassandra
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When all else fails run in circles, shout loudly

« Reply #2 on: December 25, 2014, 10:00:35 AM »

I got a welcome packet.  Once I saw someone on dialysis with a fake smile with a quote bubble that said, "Dialysis is not a death sentence, it's a life sentence!," I stopped reading.

       :rofl;
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I started out with nothing and I still have most of it left

1983 high proteinloss in urine, chemo, stroke,coma, dialysis
1984 double nephrectomy
1985 transplant from dad
1998 lost dads kidney, start PD
2003 peritineum burst, back to hemo
2012 start Nxstage home hemo
2020 start Gambro AK96

       still on waitinglist, still ok I think
Michael Murphy
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« Reply #3 on: December 25, 2014, 11:15:43 AM »

I go to a Fresenius clinic  and a got a bag, blanket and a box of books on my first day. Read most of the books but I got better info from from Bob Norton's book "My life on Dialysis"
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