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Author Topic: What the... antibodies!  (Read 5050 times)
Fatkidney
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« on: December 03, 2012, 08:39:41 PM »
So I  just found out today that I'm classified as having high antibodies.  Which royally sucketh!!! 
This is a portion of what my coordinator wrote to me, "...usually the PKE swaps we do transplant 3-12 patients who otherwise may not have been able to get a transplant because of high antibodies (like yourself)."  I was unaware that I was in the "like yourself" category.   
So have any of you been told you have high antibodies and still been able to get transplanted?  How long did it take? 
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June 2004 diagnosed with PKD
April 2012 Listed for transplant
November 2012 3rd and finally successful fistula placement, left basilic vein. Yay, it worked!
GFR down to 10.
Deceased donor transplant August 24, 2013.  Perfect match. So far so good!
MommyChick
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Me & my precious Miracle !!!
« Reply #1 on: December 03, 2012, 10:12:33 PM »
I guess it will depend on how high your antibodies are... right now I'm 7 yrs & still waiting!
If you have someone willing to donate but is not a match for you, look into the "paired donation program" if your hospital does that. I've been told you have a better chance at finding a match that way when your antibodies are high.
Good Luck & God Bless!
 :grouphug;
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~ Hello All, My names Marna ~

- 1995 - 12 yrs old found out my kidneys were both failing
- 1996 - Dec. 3 I received my 1st kidney transplant at age 13, after 7/mths on the waiting list
- 2005 - In Aug. transplant failed after 9.5 years, had to have a nephrectomy due to being very ill & massive hypertension
           - End of Aug. 1st time on dialysis
- 2006 - Had my fistula placed & ready to go
- 2010 - My little Miracle was born 6/mths into the pregnancy, weighing 2.4 lbs & 13.25 in long
          - Found out my PRA is 100% & I have antibodies that CAN'T be decreased
- 2013 - Oct. 2nd  *** I finally received my kidney!!! ***
          - Dec. 3rd I had 3.5 parathyroids removed, due to them interfering w/my new kidney.
KatieV
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« Reply #2 on: December 04, 2012, 06:51:42 AM »
My brother was involved with a paired exchange.  He had extremely high antibodies and was considered 99% sensitized to the general population.

I have high levels of antibodies too.  They aren't as bad as my brother's were.  I'm FINALLY being listed (have to redo several tests/exams) and then they'll try matching donors.  My hope is to get into a paired exchange program if I have a willing living donor that doesn't match me.
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~~~~~~~~~~~~
March 2007 - Brother diagnosed with ESRD, started dialysis 3 days later
April 2007 - Myself and sister also diagnosed with Senior-Loken Syndrome (Juvenile Nephronophthisis and Retintis Pigmentosa)

Since then, I've tried PD three times unsuccessfully, done In-Center hemo, NxStage short daily, Nocturnal NxStage, and had two transplants.  Currently doing NxStage short daily while waiting for a third transplant.

Married Sept. 2011 to my wonderful husband, James, who jumped into NxStage training only 51 days after our wedding!
~~~~~~~~~~~~
Simon Dog
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« Reply #3 on: December 04, 2012, 06:57:48 AM »
In addition to "paired donation" is "donate to the list" - buying a spot at the top of the waiting list based on someone donating a live kidney to the list in your name (you can't donate a cadaver kidney and get credit).   This isn't quite as good as paired donation since you get a cadaver kidney rather than a live one, but you still get one faster.  Just be sure you get a standard criteria, rather than extended criteria, unit.
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Rerun
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Going through life tied to a chair!
« Reply #4 on: December 04, 2012, 07:14:55 AM »
If you go to Transplant discussion there is loads of information on a high PRA (panel reactive antigens) and lots of people who go through a process called plasmsphorses (sp) and yes people still get their new kidney.

                  http://ihatedialysis.com/forum/index.php?board=27.0


      :flower;
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jbeany
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« Reply #5 on: December 04, 2012, 10:08:06 AM »
Plasmapheresis.   ;D
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"Asbestos Gelos"  (As-bes-tos yay-lohs) Greek. Literally, "fireproof laughter".  A term used by Homer for invincible laughter in the face of death and mortality.
Rerun
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Going through life tied to a chair!
« Reply #6 on: December 04, 2012, 10:38:29 AM »
Quote from: jbeany on December 04, 2012, 10:08:06 AM
Plasmapheresis.   ;D

This spell check only goes so far.....     :shy;
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Fatkidney
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« Reply #7 on: December 04, 2012, 11:49:28 AM »
Thanks peeps!  I am involved in the paired exchange with one of my friends.  I'll be asking others to sign up for that as well.  I've been told I have 44% class I antibodies and NO class II antibodies.  I don't actually know what that means, but she said they've had patients with way worse levels than that so it's not going to be easy but also not impossible.

I saw a YouTube video with a woman describing the process of plasmapheresis.  Both cool and disturbing at the same time. 
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June 2004 diagnosed with PKD
April 2012 Listed for transplant
November 2012 3rd and finally successful fistula placement, left basilic vein. Yay, it worked!
GFR down to 10.
Deceased donor transplant August 24, 2013.  Perfect match. So far so good!
MightyMike
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Why do bad things always happen to good people?
« Reply #8 on: December 04, 2012, 01:31:47 PM »
I have high antibodies and been on the list for 3 years now and at the top for over a year and still waiting.  Guess it depends on the circumstances on how long you wait like antibody level and antigen match.  Like anything with this disease there are no precise wait times you could get a transplant in 6 months or wait 20 years it's just a waiting game.
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"The greatest pleasure in life is doing what people say you cannot do."
   -Walter Bagehot
==========================
December 2003 diagnosed with IgA Nephropathy 80% Function.
October 2004 started In-Center Hemo Dialysis Perma-Cath 5% Function.
September 2005 Living Related Donor (Mother) Transplant.
March 2009 Diagnosed CKD and IgA Nephropathy.
August 2009 Upper Left Arm Fistula.
November 2009 started In-Center Hemo Dialysis.
December 2010 started Home Hemo Dialysis.
January 2012 went back to In-Center Hemo Dialysis.
Lexxtech18
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Be good to yourself when nobody else will.
« Reply #9 on: January 03, 2013, 07:06:42 PM »
There are desensitization programs... I'm not sure how well they work, but I know they're out there. I have high antibodies as well, but I'm not currently on the wait list as the docs advised against another cadaver tx. I was on the list for 5 years before my last tx which lasted only 9 months because my antibodies kept creeping up. Or so that's what U of M told me.  ::) They did plasmapheresis and IVIG and even some experimental chemo treatment with my last bout of rejection (the big one) that did absolutely NOTHING to help.
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Diagnosed with Bilateral Hypoplastic Kidney Disease - 1990
First Livinig Donor Transplant (from my mommy!) - October 3, 1996
Transplant Failed/Put on Hemodialysis - May 2005
Second Kidney Transplant (deceased donor) - July 2010
Transplant Failed/Restart In-Center Hemodialysis - February 2011
amanda100wilson
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« Reply #10 on: January 04, 2013, 03:44:08 PM »
44% is high but not that high.  If you have potential live donors for a paired donation, you have a very good chance of getting a transplant IMO.  I am highly sensitized with a 98-99% PRA and A donor became available after about a year on John Hopkins list.  The only reason that it didn't happen was that they found a previously urn diagnosed issue with my husband and he couldn't donate.
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ESRD 22 years
  -PD for 18 months
  -Transplant 10 years
  -PD for 8 years
  -NxStage since October 2011
Healthy people may look upon me as weak because of my illness, but my illness has given me strength that they can't begin to imagine.

Always look on the bright side of life...
Fatkidney
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« Reply #11 on: January 07, 2013, 10:44:23 PM »
Quote from: amanda100wilson on January 04, 2013, 03:44:08 PM
If you have potential live donors for a paired donation, you have a very good chance of getting a transplant IMO.

Thank you! I hope you're right.
Logged
June 2004 diagnosed with PKD
April 2012 Listed for transplant
November 2012 3rd and finally successful fistula placement, left basilic vein. Yay, it worked!
GFR down to 10.
Deceased donor transplant August 24, 2013.  Perfect match. So far so good!
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