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| | |-+  Important & useful advice people have said to you ???? (Kidney related)
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Author Topic: Important & useful advice people have said to you ???? (Kidney related)  (Read 1893 times)
okarol
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Photo is Jenna - after Disneyland - 1988

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« on: January 17, 2008, 03:18:59 PM »

The best advice we got was when the patient liason at USC told us that Jenna could multiple list. She actually met my husband and me in the lobby at the dialysis center, it was like a covert operation, she whispering details about how to do it and where to go - it was like she was handing over top secret information (As I recall she actually looked over her shoulder a couple of times to be sure she wasn't overheard.) Apparently UNOS had been talking for some time about discontinuing the option of multiple listing - and I think she also was concerned that if everyone knew about it, they would do it, and that would give UNOS impetus to end it. Anyway, it lead us to a better situation, surgeons that we trusted and staff that worked their butts off, so it was a very good bit of advice.
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Admin for IHateDialysis 2008 - 2014, retired.
Jenna is our daughter, bad bladder damaged her kidneys.
Was on in-center hemodialysis 2003-2007.
7 yr transplant lost due to rejection.
She did PD Sept. 2013 - July 2017
Found a swap living donor using social media, friends, family.
New kidney in a paired donation swap July 26, 2017.
Her story ---> https://www.facebook.com/WantedKidneyDonor
Please watch her video: http://youtu.be/D9ZuVJ_s80Y
Living Donors Rock! http://www.livingdonorsonline.org -
News video: http://www.youtube.com/watch?v=J-7KvgQDWpU
kitkatz
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« Reply #1 on: January 17, 2008, 04:12:56 PM »

NEVER<EVER< NEVER let anyone mess with your fistula or graft arm!
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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
KT0930
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« Reply #2 on: January 18, 2008, 11:50:28 AM »

This little gem came from Kitkatz: "Just because I CAN do it, doesn't mean I SHOULD" referring to the amount of work we do around the house, etc. Take your own advice, my friend!
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"Dialysis ain't for sissies" ~My wonderful husband
~~~~~~~
I received a 6 out of 6 antigen match transplant on January 9, 2008. Third transplant, first time on The List.
st789
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« Reply #3 on: January 18, 2008, 11:58:40 AM »

Family and friends do not care about how you feel or your past medical history and make judgemental comments. :thumbdown;
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paris
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« Reply #4 on: January 18, 2008, 12:02:05 PM »

I quote Kitkatz all the time.  I think we need to print that quote and put it where all our families can read it.    You will hear me mutter "just because I can.........." as I clean the bathroom!
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It's not what you gather, but what you scatter that tells what kind of life you have lived.
Krisna
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« Reply #5 on: January 18, 2008, 07:02:36 PM »

To me:  You know your body better than anyone!  If you think something is wrong, don't take no for an answer!

From me to other patients abt transplants:  Don't base any decision on what's happened to me!  My kidneys failed when I was 7! 
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Nov. 1979 - Diagnosed with glomerulonephritis of unknown origin by Dr. Robert
                  Hickman
Dec. 1979 - Diagnosed with Viral Pneumonia
Late Dec. 1979 - Emergency surgery to place a Scribner Shunt in left arm for dialysis
Jan. 1980 - Start hemodialysis until recovered from viral pneumonia
Feb. 27, 1980 - Receive 5 antigen living related transplant from father
Mar. 3, 1987 - PTH removed and part of one placed in left arm.  Fistula also placed in right arm.
Sept. 1988 - Start hemodialysis
Feb. 4, 1989 - Receive 6 antigen perfect match cadaveric transplant
Jan. 1994 - Return to hemodialysis
Oct. 18, 1996 - Receive 6 antigen perfect match cadaveric transplant
Nov. 22, 1996 - Emergency surgery to repair aneurysm to artery in kidney
Dec. 20, 1996 - Emergency surgery to repair aneurysm.  Kidney removed due to infection which has spread down right leg to abt mid thigh.
Apr. 1997 - Arterial bypass surgery to restore arterial blood flow to right leg
July 29, 1998 - Receive 6 antigen perfect match cadaveric transplant
Sept. 6, 2002 - Return to hemodialysis
Dec. 7, 2002 Sm. intestine ruptures while home alone. Still conscious upon arrival at hospital.
Dec. 8. 2002 - Surgery to repair ruptured bowel.  The prognosis is not good.  Surgeon tells family to prepare for the worse.  Spend a week in a coma and 3 months in hospital.  Takes abt a year and a half to completely recover.
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