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Author Topic: What is the longest a recipient has survived with a kidney transplant?  (Read 137365 times)
becky
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« Reply #50 on: February 11, 2010, 08:38:16 AM »

my wife is a kidney transplant patient and we are trying to find out the longest surviving kidney transplant patient
in the u.k.we have read so many peoples names some saying so many years and claiming to be the longest we have asked
our  area kidney assocciatian but they do not know.
best regards.
ken gray.

Edited: Topic merged - okarol/admin
« Last Edit: February 11, 2010, 09:20:42 AM by okarol » Logged
okarol
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« Reply #51 on: February 11, 2010, 09:23:47 AM »

my wife is a kidney transplant patient and we are trying to find out the longest surviving kidney transplant patient
in the u.k.we have read so many peoples names some saying so many years and claiming to be the longest we have asked
our  area kidney assocciatian but they do not know.
best regards.
ken gray.

Edited: Topic merged - okarol/admin

I read news stories and that's where most of the info in this thread comes from. I doubt there is any agency or group that actually tracks the length of transplants.
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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
becky
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« Reply #52 on: February 11, 2010, 10:30:22 AM »

how do people make claims to be the longest if there is no way of proving jt?
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okarol
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« Reply #53 on: February 11, 2010, 10:39:51 AM »

how do people make claims to be the longest if there is no way of proving jt?

I think they ask around, cannot find any information to dispute their claim (as you have found, there is no clearinghouse for this), so they may honestly believe they are the longest surviving kidney transplant recipient. And it's not like they are getting in the Guinness World Records, so the only thing the title might get you is a newspaper story.
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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
becky
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« Reply #54 on: February 12, 2010, 03:11:16 AM »

when someone puts a statement out like allen newey stating he is the longest transplantee in europe how does he jutify that and if it is not true
surely you should not permit it on a forum,otherwise anyone can claim anything which is then missleading information.
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okarol
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« Reply #55 on: February 12, 2010, 08:40:33 AM »


The stories here are mostly from newspapers - and we have no way to verify them.
Perhaps you should track down the journalists and write to them.
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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
becky
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« Reply #56 on: February 12, 2010, 12:09:34 PM »

if you could tell me the newspapers concerned i will.
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kristina
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« Reply #57 on: February 12, 2010, 12:59:46 PM »


I should think these transplant-patients kept
the medical documentation/letters of their transplant?

I still have the medical documentation & medical letter (31.1.1973)
of my first (and only) kidney biopsy which diagnosed that my
kidney failure & coma in 1971 happened because
I suffer from chronic proliferative glomerulonephritis & hypertension.
I kept this medical letter all those years
& shown it whenever it was needed.
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Bach was no pioneer; his style was not influenced by any past or contemporary century.
  He was completion and fulfillment in itself, like a meteor which follows its own path.
                                        -   Robert Schumann  -

                                          ...  Oportet Vivere ...
okarol
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« Reply #58 on: February 12, 2010, 02:32:40 PM »

if you could tell me the newspapers concerned i will.

You can read back all through this thread and see that I have added the link to the news stories section where each original article was posted. Follow that and at the bottom of each news story there is a link to the paper, and often the reporter's email is listed.
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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
Hanify
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Hadija, Athol, Me and Molly at Havelock North 09

« Reply #59 on: February 12, 2010, 07:39:39 PM »

And you should always read newspaper articles about anything with a pinch of salt anyway.  Often people will say they've been on dialysis for so many yers - and then when you read beltween the lines they had a transplant for 10 of them or something.  There was one article in Australia and the guy was monaing cos he had a 4 hour drive to get to dialysis or something.  I realised then that he lived in a place that was only about 1 1/2 hours from Brisbane - which is a huge city with multiple hemo centres.  He must have quoted the time it would take to get to a centre up north of him - sounded way better in the story eh???
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Diagnosed Nov 2007 with Multiple Myeloma.
By Jan 2008 was in end stage renal failure and on haemodialysis.
Changed to CAPD in April 2008.  Now on PD with a cycler.  Working very part time - teaching music.  Love it.  Husband is Paul (we're both 46), daughter Molly is 13.
KraigG
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I feel like I'm on the Dark Side of The Moon.

« Reply #60 on: March 09, 2010, 01:53:17 AM »

I had my kidney/pancreas transplant August 13, 1990. Pancreas was removed in 2001, but kidney still functioning, but going bad as the months go by. Not quite 20 years.

I'll be back on the waiting list for a new pair in the nest few weeks. It seems as though related donor patients have the longest surviving transplants, but my doctors have told me mine is going bad because of the anti-rejection medications I'm on are not as good as the meds they currently prescribe.
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First bout on dialysis: June, 1990
Kidney/Pancreas transplant: August, 1990
Pancreas removed (hospital error): January, 2001
Kidney fails: August, 2011
Second round of dialysis: August, 2011
rookiegirl
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« Reply #61 on: March 09, 2010, 07:28:49 PM »

I had my kidney/pancreas transplant August 13, 1990. Pancreas was removed in 2001, but kidney still functioning, but going bad as the months go by. Not quite 20 years.

I'll be back on the waiting list for a new pair in the nest few weeks. It seems as though related donor patients have the longest surviving transplants, but my doctors have told me mine is going bad because of the anti-rejection medications I'm on are not as good as the meds they currently prescribe.

what meds are you taking that would cause your transplanted kidney to go bad?
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2000-Diagnosed IGA Nephropathy
2002-1st biopsy (complications)
2004-2nd biopsy
10/03/07-Tenckhoff Catheter Placement
10/22/07-Started Peritoneal Dialysis
03/2008-Transplant team meeting
04/2008-Transplant workup
05/2008-Active Transplant list
3/20/09-Cadaver Kidney Transplant
4/07/09-Tenckhoff Catheter removed
4/20/09-New kidney biopsy
KraigG
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I feel like I'm on the Dark Side of The Moon.

« Reply #62 on: March 10, 2010, 02:18:20 AM »

The stuff they handed out 20 years ago: Cyclosporine, prednisone, and Imuran. No longer on the Imuran, but those were the big 3 antirejection meds back in 1990.
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First bout on dialysis: June, 1990
Kidney/Pancreas transplant: August, 1990
Pancreas removed (hospital error): January, 2001
Kidney fails: August, 2011
Second round of dialysis: August, 2011
rookiegirl
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« Reply #63 on: March 10, 2010, 05:52:08 PM »

I'm currently taking Prograf, Myfortic and Prednisone.  I was told I will be on Prednisone for the rest of my life due to high PRA.  This is pretty scary stuff.
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2000-Diagnosed IGA Nephropathy
2002-1st biopsy (complications)
2004-2nd biopsy
10/03/07-Tenckhoff Catheter Placement
10/22/07-Started Peritoneal Dialysis
03/2008-Transplant team meeting
04/2008-Transplant workup
05/2008-Active Transplant list
3/20/09-Cadaver Kidney Transplant
4/07/09-Tenckhoff Catheter removed
4/20/09-New kidney biopsy
okarol
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« Reply #64 on: March 11, 2010, 01:47:50 AM »

40 Years Later: Transplant Patient Beats Odds - Frank Germinaro Celebrates 4 Decades Of Medical History
http://ihatedialysis.com/forum/index.php?topic=18146.0
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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
rookiegirl
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« Reply #65 on: March 11, 2010, 04:48:17 PM »

thank you for posting the link.
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2000-Diagnosed IGA Nephropathy
2002-1st biopsy (complications)
2004-2nd biopsy
10/03/07-Tenckhoff Catheter Placement
10/22/07-Started Peritoneal Dialysis
03/2008-Transplant team meeting
04/2008-Transplant workup
05/2008-Active Transplant list
3/20/09-Cadaver Kidney Transplant
4/07/09-Tenckhoff Catheter removed
4/20/09-New kidney biopsy
okarol
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« Reply #66 on: March 17, 2010, 10:46:13 AM »

Kidney donor gave me 30 extra years --  Mike Broddle -- March 13, 1980 [Mar. 2010] go to http://ihatedialysis.com/forum/index.php?topic=18221.0
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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
nebraskagirl
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« Reply #67 on: April 20, 2010, 06:24:57 AM »

I am also one of those great survivors  :pray;. I've had my kidney transplant going on 30yrs-May 17-1980 :bow;!!!!! I had mine in Omaha, NE, it was a cadaver. I did dialysis twice a week for 13 months. I got the call the night before I was to go for treatment. And when I got to the hospital they told me they were going to tell me I would have to start going 3 times a week. So god works in mysterious ways. It's such an inspiration to read and hear about how well other people are doing with their transplants. I'm hoping for many many more years of good health and good fortune. I hope to make some new friends here. 
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Lesa Parker - Proud Kidney Transplant of 30yrs as of May 17-1980
okarol
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« Reply #68 on: April 20, 2010, 02:13:24 PM »

 :clap; Congrats! It's so nice to know someone who has had a transplant for so long! Was it a 6/6 match? I think that's the longest I have heard from a deceased donor. I hope you have many more years!!  :yahoo;
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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
st789
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« Reply #69 on: April 20, 2010, 02:27:07 PM »

Us new transplant recipients here can borrow longevity from some members here. :pray;
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rookiegirl
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« Reply #70 on: April 20, 2010, 05:17:35 PM »

I am also one of those great survivors  :pray;. I've had my kidney transplant going on 30yrs-May 17-1980 :bow;!!!!! I had mine in Omaha, NE, it was a cadaver. I did dialysis twice a week for 13 months. I got the call the night before I was to go for treatment. And when I got to the hospital they told me they were going to tell me I would have to start going 3 times a week. So god works in mysterious ways. It's such an inspiration to read and hear about how well other people are doing with their transplants. I'm hoping for many many more years of good health and good fortune. I hope to make some new friends here.

Wow! This is such an inspiration for me.
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2000-Diagnosed IGA Nephropathy
2002-1st biopsy (complications)
2004-2nd biopsy
10/03/07-Tenckhoff Catheter Placement
10/22/07-Started Peritoneal Dialysis
03/2008-Transplant team meeting
04/2008-Transplant workup
05/2008-Active Transplant list
3/20/09-Cadaver Kidney Transplant
4/07/09-Tenckhoff Catheter removed
4/20/09-New kidney biopsy
okarol
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« Reply #71 on: May 19, 2010, 10:33:16 PM »

This guy falls into BOTH categories! Long living dialysis patient AND transplant patient!
Beginning at age 22, Dr. Robin Eady underwent dialysis treatment for 24 years, and he has lived with a kidney transplant for 23 years. [May 2010] http://ihatedialysis.com/forum/index.php?topic=18959.0
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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
okarol
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Photo is Jenna - after Disneyland - 1988

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« Reply #72 on: June 16, 2010, 12:29:43 AM »

Kathy Vilski believes she has someone to thank in Kenosha for saving her life nearly 40 years ago. Although this person lost his life, it was the donor’s kidney that gave her back hers. She was approved for transplantation and had her surgery Sept. 18, 1975. [June 2010] http://ihatedialysis.com/forum/index.php?topic=19231.0
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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
okarol
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« Reply #73 on: August 08, 2010, 02:48:41 AM »

Robert Rodriguez says he had no idea in 1980 that he would live to celebrate the 30th anniversary of his kidney transplant. Now Rodriguez, 84, is a grandfather of two and a great-grandfather of one. [Aug 2010] http://ihatedialysis.com/forum/index.php?topic=19784.0
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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
okarol
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Photo is Jenna - after Disneyland - 1988

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« Reply #74 on: August 23, 2010, 02:12:57 PM »

Harry Turner, 61, still going strong: "Forty years later, a brother's gift of life. [Aug 2010] http://ihatedialysis.com/forum/index.php?topic=19925.0
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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
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