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Author Topic: What is the longest a patient has survived on dialysis?  (Read 94143 times)
Bill Peckham
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« Reply #25 on: March 22, 2009, 07:28:40 PM »
Karol - it would be easier to track if you updated the first post as you identify additional names. Here are some new ones
http://medgenmed.medscape.com/viewarticle/580265_print
there is the case study and then a little table with several names

Jim Albers was one Scribner's first patients and made it into his 35th or 36th year.
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http://www.billpeckham.com  "Dialysis from the sharp end of the needle" tracking  industry news and trends - in advocacy, reimbursement, politics and the provision of dialysis
Incenter Hemodialysis: 1990 - 2001
Home Hemodialysis: 2001 - Present
NxStage System One Cycler 2007 - Present
        * 4 to 6 days a week 30 Liters (using PureFlow) @ ~250 Qb ~ 8 hour per treatment FF~28
okarol
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« Reply #26 on: March 22, 2009, 07:43:12 PM »
Quote from: Bill Peckham on March 22, 2009, 07:28:40 PM
Karol - it would be easier to track if you updated the first post as you identify additional names. Here are some new ones
http://medgenmed.medscape.com/viewarticle/580265_print
there is the case study and then a little table with several names

Jim Albers was one Scribner's first patients and made it into his 35th or 36th year.

Thanks, maybe I'll cut and paste sometime when I have a chance.
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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 #27 on: March 23, 2009, 09:40:22 AM »
Frank Kikkert will mark his 30th anniversary on dialysis on April 7, 2009 http://ihatedialysis.com/forum/index.php?topic=13024.0
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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
Bajanne
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« Reply #28 on: March 26, 2009, 11:57:46 AM »
I cannot believe that this is the first time that I have seen this thread!!!!!  I am totally ashamed!   Especially since a countryman of mine was mentioned in it.
Vern Best - known as El Verno del Congo was the first person I had ever heard about on dialysis.  He only passed last year.  He was a cultural icon in my country, Barbados - a singer and drummer.
I love to hear these stories of people living long on dialysis.  they encourage me.
My brother died of cardiac arrest after 10 years on dialysis.

We have to look after our hearts, people!!!
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"To be found in Him, not having a righteousness of my own ...but that which is based on faith"



I LOVE  my IHD family! :grouphug;
lanemn9
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« Reply #29 on: March 31, 2009, 10:28:28 AM »
Hi I have been on dialysis 5 yrs now and 5 yrs seems like a life time not looking forward to 25 more but then who would be
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Zach
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"Still crazy after all these years."
« Reply #30 on: March 31, 2009, 11:25:19 AM »
Time flies when you're having fun!


8)
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Uninterrupted in-center (self-care) hemodialysis since 1982 -- 34 YEARS on March 3, 2016 !!
~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~
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
Fresenius Optiflux-180 filter--without reuse
Fresenius 2008T dialysis machine
My KDOQI Nutrition (+/ -):  2,450 Calories, 84 grams Protein/day.

"Living a life, not an apology."
okarol
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Photo is Jenna - after Disneyland - 1988

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« Reply #31 on: April 29, 2009, 11:47:28 PM »

Genell Drake has been receiving dialysis treatments for renal failure for several hours per day, three days a week for 32 years. [April 2009] http://ihatedialysis.com/forum/index.php?topic=13671.0
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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 #32 on: May 17, 2009, 09:05:21 PM »
Thirty years of dialysis for 'miracle' woman Theresa Spinner [May 2009] http://ihatedialysis.com/forum/index.php?topic=13959.0
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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
Jean
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« Reply #33 on: May 17, 2009, 11:35:30 PM »
That is so amazing!!!! I asked my neph the same question, and he said, " I want you to think of dialysis as a life preserving help". But I did later read that 50% of the people who die on dialysis die of heart problems, not the dialysis.
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One day at a time, thats all I can do.
maritza0486
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« Reply #34 on: August 11, 2009, 03:17:52 PM »
I know a lady at my shift in dialysis and she says she has been on dialysis for 36 years. I was amazed to have met her. She is wonderful and so very friendly. She told me that she did receive a kidney transplant years ago but it only lasted her a few months because she has a condition that caused for the kidney to reject even with her medications. She said it was the best few months. I feel really bad that her condition is a problem to receive a kidney transplant. I pray for her and hope she is ok because she is such a sweet lady.

So I wanted to know how long everyone has been on dialysis...I have been on dialysis for 3 months already. It hasn't been so bad. :waving;
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~Diagnosed with End Stage Renal Disease at age 17 (a month before turning 18)
~Kidney Transplant from sister February 10, 2005
~Transplant failed December 2008
~Began Dialysis for my very first time May 6, 2009
~Put on Transplant List on June 5, 2009
~Miraculous phone call from Montefiore about potential kidney August 31, 2009
~2nd Kidney Transplant!!! September 1, 2009
~Sep. 6, 2009 Creatnine 1.1 ---- Sep. 11, 2009 Creatnine 1.5 --- Sep. 18, 2009 Creatnine 1.3
~May 14, 2010 -- Creatnine 1.0!!!! I am healthier than ever. 8 months since 2nd transplant!!
iketchum
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« Reply #35 on: August 11, 2009, 03:21:25 PM »
we have several guys at the unit who have been doing it over 20 years
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Bill Peckham
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« Reply #36 on: August 11, 2009, 03:41:36 PM »
On this podcast  Across the Country - Dialysis Style with Harvey Wells - http://www.rsnhope.info/programs/kidneytalkshows/Harvey_Wells/Harvey_Wells_0809.php
Harvey mentions meeting someone who has been on dialsyis for 40 years.

It's a good program - about 25 minutes long. You can listen online or download it through iTunes for free. All the KidneyTalk shows are free. There are over 100 now.
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http://www.billpeckham.com  "Dialysis from the sharp end of the needle" tracking  industry news and trends - in advocacy, reimbursement, politics and the provision of dialysis
Incenter Hemodialysis: 1990 - 2001
Home Hemodialysis: 2001 - Present
NxStage System One Cycler 2007 - Present
        * 4 to 6 days a week 30 Liters (using PureFlow) @ ~250 Qb ~ 8 hour per treatment FF~28
napala turki
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Have to plan for living
« Reply #37 on: August 12, 2009, 07:10:33 AM »
I'm now 51, how long can I live? aiya..... what to do, life must goes on maa...... just pretending nothing happens lorr..., however I'm very glade, I'm still having a family, job, friends and the most wonderful moment is love from God... keep me alife. :bow; :bandance;
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okarol
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Photo is Jenna - after Disneyland - 1988

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« Reply #38 on: September 10, 2009, 11:10:09 PM »
Quote from: okarol on March 22, 2009, 12:09:59 PM
Quote from: okarol on September 17, 2008, 03:23:05 PM

* Ken Sharp celebrated surviving 32 years on dialysis yesterday. Sharp, 52, has been on dialysis since Sept. 6, 1976 - http://ihatedialysis.com/forum/index.php?topic=10013.0


Update - http://ihatedialysis.com/forum/index.php?topic=13005.0

Update! Ken Sharp - On Dialysis for 33 Years! http://ihatedialysis.com/forum/index.php?topic=15680.0
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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
LightLizard
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« Reply #39 on: September 11, 2009, 11:58:18 AM »
http://www.youtube.com/watch?v=BNN8sGZQd5w

43 years on dialysis. a guiness book record holder, by the way...
;)
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okarol
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Photo is Jenna - after Disneyland - 1988

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« Reply #40 on: September 12, 2009, 10:26:19 AM »
Quote from: LightLizard on September 11, 2009, 11:58:18 AM
http://www.youtube.com/watch?v=BNN8sGZQd5w

43 years on dialysis. a guiness book record holder, by the way...
;)
'
Thanks for giving us that info, more here http://www.kidney.org.uk/books/tocher.html
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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 #41 on: September 22, 2009, 01:29:05 PM »
Lori Van Antwerp considers her 35 years on kidney dialysis a bittersweet milestone. Van Antwerp was 15 when she started dialysis in May 1972. [Sept.2009] http://ihatedialysis.com/forum/index.php?topic=15856.0
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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
Zach
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"Still crazy after all these years."
« Reply #42 on: September 22, 2009, 08:57:19 PM »
 :clap;
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Uninterrupted in-center (self-care) hemodialysis since 1982 -- 34 YEARS on March 3, 2016 !!
~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~
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
Fresenius Optiflux-180 filter--without reuse
Fresenius 2008T dialysis machine
My KDOQI Nutrition (+/ -):  2,450 Calories, 84 grams Protein/day.

"Living a life, not an apology."
okarol
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Photo is Jenna - after Disneyland - 1988

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« Reply #43 on: September 26, 2009, 08:54:41 AM »
30 Years on Dialysis -- 'Living is what matters' says Bernice Joseph, age 66, after 30 years of dialysis and 2 short-term failed transplants. [Sept. 2009] http://ihatedialysis.com/forum/index.php?topic=15900.0
« Last Edit: September 26, 2009, 08:57:46 AM by okarol » Logged

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
Lillupie
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wedding 12-10-11

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« Reply #44 on: October 21, 2009, 12:08:36 PM »
THere is a guy who wrote an article and i also got the pleasure of him filling out my book's questionaire, Rick Faber who has been on kidney dialysis since 1968.

Lisa
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Check out my Facebook profile for CKD "Help Lisa Spread Awareness for Kidney Disease"

It is my utmost dream and desire to reach out to other kidney patients for them to know that they are not alone in this, also to reach out to those who one day have to go on dialysis though my book i am writing!

dx with lupus nephritis 5/99'
daughter born 11/2005
stage IV CKD 11/2005-6/2007
8/2007- PD cathater inserted
9/2007- revision of PD Cathater
10/2007 started PD
okarol
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Photo is Jenna - after Disneyland - 1988

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« Reply #45 on: October 21, 2009, 12:30:56 PM »
Quote from: Lillupie on October 21, 2009, 12:08:36 PM
THere is a guy who wrote an article and i also got the pleasure of him filling out my book's questionaire, Rick Faber who has been on kidney dialysis since 1968.

Lisa

http://ihatedialysis.com/forum/index.php?topic=10695.0 Yeah - he's here!
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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
Tommy
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Here I' am
« Reply #46 on: October 26, 2009, 02:48:31 PM »
Hallo, my Name is Thomas Lehn and I come from Ingelheim in the near of Frankfurt/Germany. I'm at dialysis since 1970. I was 14 years old when I come at dialysis. Now, I am Working the whole day (EDV Programmer)and since 1983 I make homedialysis with my wife in the evening or night for 5 until 7 hours three times in the week. My hobbies there are driving with my cabrio and I'm in leader by a dialysis association in Germany. Look my website (www.thomas-lehn.de)
Many greetings for you, Thomas Lehn
You can write me: Thomas.Lehn@onlinehome.de
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Lillupie
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wedding 12-10-11

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« Reply #47 on: October 30, 2009, 09:22:00 PM »
I have a question. Why arent these people getting transplants?


Lisa
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Check out my Facebook profile for CKD "Help Lisa Spread Awareness for Kidney Disease"

It is my utmost dream and desire to reach out to other kidney patients for them to know that they are not alone in this, also to reach out to those who one day have to go on dialysis though my book i am writing!

dx with lupus nephritis 5/99'
daughter born 11/2005
stage IV CKD 11/2005-6/2007
8/2007- PD cathater inserted
9/2007- revision of PD Cathater
10/2007 started PD
okarol
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Photo is Jenna - after Disneyland - 1988

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« Reply #48 on: October 31, 2009, 12:31:44 AM »
Some people do not qualify for a transplant and other choose to stay on dialysis rather than get a transplant.
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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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Posts: 100933


Photo is Jenna - after Disneyland - 1988

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« Reply #49 on: January 12, 2010, 08:21:12 AM »
Roy Bowen has been on dialysis the past 23 years [Jan 2010] http://ihatedialysis.com/forum/index.php?topic=17374.0
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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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