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Author Topic: Maybe This Will Help Someone Else  (Read 3102 times)
flatxlander
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Still alive on the flatlands

« on: December 20, 2007, 10:25:41 AM »

I just received notice from the Mayo Clinic I am no longer considered to be on the transplant list for a cadaver kidney. After contacting my neph at Mayo's, he stated that: 1-My condition was not much worse that any of the previous annual tests. 2-I did have an enzyme that showed up making me a greater risk to succeed as a transplant receiptcant. This was a new test, I am sorry I don't know much about the test or the actual enzyme's name yet. 3-The Mayo Clinic was making an effort to show an excellent success rate on their "public report card".
He then stated he was afraid the Clinic was getting away from treating the difficult medical cases. He hated to see this, because their mission was historically to treat the cases that no other medical institutes would tackle. He felt anyone who had been on their list for four years like I had been should be treated much more fairly by their obligation to keep me on their list. Such is not the case now. If the great Mayo Clinic is shedding cases that show more risk to make a good public grade, I fear many more medical clinics/hospitals will do the same.
Maybe my case is a unique one, I hope others are not treated so badly. But please be aware of such things if you are on a transplant list.
Good luck to all.
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okarol
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Photo is Jenna - after Disneyland - 1988

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« Reply #1 on: December 20, 2007, 10:33:02 AM »

If it were me I would appeal the decision. I would ask for an explanation in writing. And I would find a new transplant center.
I am sorry about this, but every center has their own guidelines, which can change over time. Next year they will be different again. Hang in there!
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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
willieandwinnie
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« Reply #2 on: December 20, 2007, 10:51:42 AM »

:banghead; Hang in there flatxlander. If all transplant centers work this way my husband would not of ever been put on the list. Find another center. Get your neph to give you a referral. What one center won't do, another will. Take care.

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"I know there's nothing to it, but I want to know what it is there's nothing to"
KT0930
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« Reply #3 on: December 20, 2007, 01:30:11 PM »

I agree with willie. If my transplant team didn't take the tough cases, I certainly wouldn't have made it (this will be my third transplant). My surgeon told me just the other day that he's put six new kidneys into one person! (not all at the same time, of course!) Find a new center.
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"Dialysis ain't for sissies" ~My wonderful husband
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I received a 6 out of 6 antigen match transplant on January 9, 2008. Third transplant, first time on The List.
kitkatz
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« Reply #4 on: December 20, 2007, 04:49:59 PM »

Come on over and sit in my corner.  I cannot be listed either.
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Take it one day, one hour, one minute, one second at a time.

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stauffenberg
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« Reply #5 on: December 21, 2007, 09:41:24 AM »

Unfortunately, the Mayo's practice is becoming quite common.  Transplant centers want to brag about their excellent success record for their kidney transplant programs, so the best way to inflate the good results they need for added prestige in the medical community is to take only the healthiest people for transplant.  Doctors who are willing to play such games with people's lives in order to enhance the prestige of their programs are in the wrong profession, in my view.
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Romona
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« Reply #6 on: December 21, 2007, 01:53:53 PM »

Please try another center. All of us have heard success stories after people were turned down by other centers.
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Zach
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« Reply #7 on: December 21, 2007, 08:27:42 PM »

Unfortunately, the Mayo's practice is becoming quite common.  Transplant centers want to brag about their excellent success record for their kidney transplant programs, so the best way to inflate the good results they need for added prestige in the medical community is to take only the healthiest people for transplant.  Doctors who are willing to play such games with people's lives in order to enhance the prestige of their programs are in the wrong profession, in my view.

You're absolutely correct on this one.
 8)
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Uninterrupted in-center (self-care) hemodialysis since 1982 -- 34 YEARS on March 3, 2016 !!
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No transplant.  Not yet, anyway.  Only decided to be listed on 11/9/06. Inactive at the moment.  ;)
I make films.

Just the facts: 70.0 kgs. (about 154 lbs.)
Treatment: Tue-Thur-Sat   5.5 hours, 2x/wk, 6 hours, 1x/wk
Dialysate flow (Qd)=600;  Blood pump speed(Qb)=315
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Katonsdad
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« Reply #8 on: December 23, 2007, 03:24:35 PM »

You need to appeal the decision . Let them know you will not just say "Okay and go away "
Eventually they will give in .  Get your Dr. behind you on it also .

Best wishes

Katonsdad
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Diabetes 1976
Eye issues 1987
Kidney Failure 1997
CAPD 1997 , Stopped 1997 due to infections evey 28 days
Started In Center Hemo 1997
Received Kidney/Pancreas transplant 1999 at UCLA
Wife and I had son in 2001 , by donor for my part (Stopping the illness train)
Kidney failed 2011 , Back on Hemo . Looking to retransplant as the Kidney is still working



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