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Author Topic: Continuing immunuesuppression after failed transplant...  (Read 3869 times)
rsudock
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will of the healthy makes up the fate of the sick.

« on: July 11, 2011, 03:11:15 AM »

I thought I would share this with you folks because my doctor (Dr. Joshua Augustine) actually just wrote a paper and is in the process of getting it published. (Neil and I are part of the subjects in the study!)

He basically is making a case for keeping folks on transplant meds even after their transplant fails. This will help patients PRA stay lower and lower the need to take out a rejected kidney. He also sites other issues patients may have while stopping immunosuppression...I will see if I can get a copy of the study and posted here....

stay tuned...
R
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Born with autosomal recessive polycystic kidney disease
1995 - AV Fistula placed
Dec 7, 1999 cadaver transplant saved me from childhood dialysis!
10 transplant years = spleenectomy, gall bladder removed, liver biopsy, bone marrow aspiration.
July 27, 2010 Started dialysis for the first time ever.
June 21, 2011 2nd kidney nonrelated living donor
September 2013 Liver Cancer tumor.
October 2013 Ablation of liver tumor.
Now scans every 3 months to watch for new tumors.
Now Status 7 on the wait list for a liver.
How about another decade of solid health?
Deanne
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« Reply #1 on: July 11, 2011, 07:28:18 AM »

Interesting..... I think the word is getting out about this. I'm in the evaluation phase for transplant and at the education class part of it, they stressed that even if the transplant failed, I should count on staying on a level of immunesuppressants probably for the rest of my life to try to maintain a low PRA.
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Deanne

1972: Diagnosed with "chronic kidney disease" (no specific diagnosis)
1994: Diagnosed with FSGS
September 2011: On transplant list with 15 - 20% function
September 2013: ~7% function. Started PD dialysis
February 11, 2014: Transplant from deceased donor. Creatinine 0.57 on 2/13/2014
okarol
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Photo is Jenna - after Disneyland - 1988

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« Reply #2 on: July 11, 2011, 11:33:06 AM »

The idea of removing a failed transplant has come up because the PRA can improve quite a bit. Taking the immunos makes sense too.
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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
bette1
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My dear daughter

« Reply #3 on: July 11, 2011, 12:50:42 PM »

After my first failed transplant I stayed on prednisone for 4 years.  The failed kidney continued to make urine and that helped me quite a bit. 
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Diagnosed with FSGS April of 1987
First Dialysis 11/87 - CAPD
Transplant #1 10/13/94
Second round of Dialysis stated 9/06 - In Center Hemo
Transplant  #2 5/24/10
monrein
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« Reply #4 on: July 11, 2011, 04:03:35 PM »

I stopped my immunos (except prednisone) to give my body a rest from the heavy duty meds.  However my pra was always 0%, even after 23 years with first trx.  On the other hand that first trx had to be removed 2 months after 2nd trx.
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Pyelonephritis (began at 8 mos old)
Home haemo 1980-1985 (self-cannulated with 15 gauge sharps)
Cadaveric transplant 1985
New upper-arm fistula April 2008
Uldall-Cook catheter inserted May 2008
Haemo-dialysis, self care unit June 2008
(2 1/2 hours X 5 weekly)
Self-cannulated, 15 gauge blunts, buttonholes.
Living donor transplant (sister-in law Kathy) Feb. 2009
First failed kidney transplant removed Apr.  2009
Second trx doing great so far...all lab values in normal ranges
lawphi
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« Reply #5 on: July 11, 2011, 06:18:55 PM »

Wake Forest prefers to maintain immunosuppression with a failed graft.  I just figured it was the gold standard. Can't wait to see the study.  He should include a picture. 

Wake would not take out Ham's 13 year old graft unless it is absolutely necessary.  They did remove Ham's first kidney a day after it clotted. 
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Girl meets boy with transplant, falls in love and then micromanages her way through the transplant and dialysis industry. Three years, two transplant centers and one NxStage machine later, boy gets a kidney at Johns Hopkins through a paired exchange two months after evaluation.  Donated kidney in June and went back to work after ten days.
Jie
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« Reply #6 on: July 11, 2011, 08:42:06 PM »

If the transplanted kidney does not work anymore, it will make more sense to remove it than continue to take immu. drugs. It really is a risks/benefits issue. Continuing taking the drugs will have great risks too.
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monrein
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« Reply #7 on: July 12, 2011, 04:01:35 AM »

Mine became necrotic apparently, cyclosporine toxicity was the cause of the decline in the first place but after the new trx, it seemed to suffer a lack of adequate blood flow and caused much pain and distress.  The new kidney was a trooper though and despite fever and pain my creatinine stayed within normal limits...very confusing for the docs to figure out what was going on. 
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Pyelonephritis (began at 8 mos old)
Home haemo 1980-1985 (self-cannulated with 15 gauge sharps)
Cadaveric transplant 1985
New upper-arm fistula April 2008
Uldall-Cook catheter inserted May 2008
Haemo-dialysis, self care unit June 2008
(2 1/2 hours X 5 weekly)
Self-cannulated, 15 gauge blunts, buttonholes.
Living donor transplant (sister-in law Kathy) Feb. 2009
First failed kidney transplant removed Apr.  2009
Second trx doing great so far...all lab values in normal ranges
bette1
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My dear daughter

« Reply #8 on: July 12, 2011, 09:24:28 AM »

My failed transplant from 1994 is still inside me.  I asked my transplant team about it and they said it would shrivel up.  I actually have 4 kidneys in my body.  I would rather not have them removed if it is at all possible.  Who wants another surgery? 

Why would they have to be removed if they aren't causing any problems?
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Diagnosed with FSGS April of 1987
First Dialysis 11/87 - CAPD
Transplant #1 10/13/94
Second round of Dialysis stated 9/06 - In Center Hemo
Transplant  #2 5/24/10
cariad
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What's past is prologue

« Reply #9 on: July 12, 2011, 10:45:20 AM »

If the transplanted kidney does not work anymore, it will make more sense to remove it than continue to take immu. drugs. It really is a risks/benefits issue. Continuing taking the drugs will have great risks too.

I disagree. I stayed on Myfortic after my GFR went down to end-stage levels. A nephrectomy is a painful and shocking procedure for the system and taking microscopic doses of Myfortic to preserve PRA was far preferable. If they know it is not working at all, take it out during the transplant but don't subject a patient to yet another operation.

Bette, I still have the first transplant, too. I forget what the surgeon said to me about that - something was off and they were thinking they would have to take it out, but since my first donor is still alive, they were able to test his blood against mine and if I remember correctly, there is no evidence of my system creating any antibodies to that kidney, or attacking it in any way. So it stays.
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Be kind, for everyone you meet is fighting a great battle. - Philo of Alexandria

People have hope in me. - John Bul Dau, Sudanese Lost Boy
monrein
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« Reply #10 on: July 12, 2011, 11:08:32 AM »

I would have had 4 also if no problems had arisen.  My team doesn't mess with sleeping dogs either.
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Pyelonephritis (began at 8 mos old)
Home haemo 1980-1985 (self-cannulated with 15 gauge sharps)
Cadaveric transplant 1985
New upper-arm fistula April 2008
Uldall-Cook catheter inserted May 2008
Haemo-dialysis, self care unit June 2008
(2 1/2 hours X 5 weekly)
Self-cannulated, 15 gauge blunts, buttonholes.
Living donor transplant (sister-in law Kathy) Feb. 2009
First failed kidney transplant removed Apr.  2009
Second trx doing great so far...all lab values in normal ranges
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