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Author Topic: What is the longest a patient has survived on dialysis?  (Read 34844 times)
okarol
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« on: August 29, 2008, 05:11:40 PM »

What is the longest a patient has survived on dialysis?

Info gathered on the internet August 2008.


   Ed Strudwick, age 67, has spent nearly 36 years on hemodialysis it may be a world record. (Oct. 2007) http://www.renalandurologynews.com/The-Hemodialysis-Marathon-Man/article/58020/
   Brian Tocher has been 40 years on dialysis (interspersed by two transplantations.) (2008) http://www.brian-tocher.bravehost.com/
   Patricia LeBlack, in her 39th year of continuous kidney dialysis, may be the longest-surviving kidney dialysis patient in the world. (Sept. 2006) http://www.guardian.co.uk/print/0,,329581861-103680,00.html
   Dr. Robin Eady, the longest-surviving dialysis patient in the world, began the treatment in 1963 at age 22 until he received a kidney transplant in 1987. (June 2003) http://www.alexkingsbury.com/2003/06/22/ex-dialysis-patient-honored-for-ideals/
   Ron Hasegawa - For three decades, since he was 19 years old, he has been on a dialysis machine. (Aug. 2001) http://www.mv-voice.com/morgue/2001/2001_08_10.hf10.html
   Vern El Verno Del Congo Best had been on dialysis for 28 years and was Barbados' longest surviving kidney failure patient. He was 69. http://www.nationnews.com/321907336652528.php
   Bruce Miller, the longest-living dialysis patient in Texas, has been on dialysis for 30 years. (Oct. 2002) http://www.news8austin.com/content/headlines/?ArID=50178&SecID=2
   Ruth Reynolds, a 53-year old dialysis patient, has been undergoing dialysis for 32 years. (Feb. 2007) http://jimmorris.wordpress.com/2007/02/page/2/
   Lynnette Zimmerman is the longest-surviving dialysis patient in Billings. Twenty-five years is not totally uncommon but a bit unusual. (Jan. 2003) http://www.billingsgazette.com/newdex.php?display=rednews/2003/01/08/build/health/20-dialysis.inc

And then there's our very own Zach!  :bandance;

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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.
Now needs a new kidney, 7 yr transplant lost due to rejection.
She started PD Sept. 2013
Searching for a living donor using social media, friends, family.
Her story ---> https://www.facebook.com/WantedKidneyDonor
Jenna is an artist, she loves music, is a fan of ComicCon, and has been writing stories since she was little.
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
kitkatz
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« Reply #1 on: August 29, 2008, 05:16:25 PM »

I will be at ten years November 2, 2008.
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Ivanova: "Old Egyptian blessing: May God stand between you and harm in all the empty places you must walk." Babylon 5

Remember your present situation is not your final destination.

"If we don't find a way out of this soon, I'm gonna lose it. Lose it... It means go crazy, nuts, insane, bonzo, no longer in possession of ones faculties, three fries short of a Happy Meal, wacko!" Jack O'Neill - SG-1
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« Reply #2 on: August 29, 2008, 05:46:09 PM »

There's a lady from Australia who posts on Davita sometimes who has been on 39 years.
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Zach
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"Still crazy after all these years."

« Reply #3 on: August 29, 2008, 05:52:26 PM »


And then there's our very own Zach! :bandance;


Thank you okarol!
 :-*
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In-center hemodialysis since 1982--32 YEARS on March 3, 2014 !!
~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~
No transplant.  Not yet, anyway.  Only decided to be listed on 11/9/06    ;)
Work full time.  I make films.

Just the facts: 75 kgs. (about 165 lbs.)
5 hours   3x/wk
600 dialysate flow (Qd)  ~400 blood pump (Qb)
Fresenius Optiflux-180 filter--without reuse
Fresenius 2008T dialysis machine
My KDOQI (+/ -):  2,625 Calories, 90 grams Protein per day.

"Living a life, not an apology."
Adam_W
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« Reply #4 on: August 29, 2008, 06:24:01 PM »

I heard a rumour of a lady that survived 60 years on dialysis. I seriously doubt it was true, though. If it was, then she would have been one of the first dialysis patients ever.

Adam
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-Diagnosed with ESRD (born with one kidney, hypertension killed it) Jan 21st, 2007
-Started dialysis four days later in hospital (Baxter 1550-I think, then Gambro Phoenix)
-Started in-centre dialysis Feb 6th 2007 (Fres. 2008H)
-Started home hemo June 5th 2007 (NxStage/Pureflow)
-PD catheter placed June 6th 2008 (Bye bye NxStage, at least for now)
-Started CAPD July 4th, 2008
-PD catheter removed Dec 2, 2008-PD just wouldn't work, so I'm back on NxStage
-Kidney function improved enough to go off dialysis, Feb. 2011!!!!!
-Back on dialysis (still NxStage) July 2011 :(
-In-centre self-care dialysis March 2012 (Fresenius 2008K)
-Not on transplant list yet.


"Don't live for dialysis, use dialysis to LIVE"
circleNthedrain
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« Reply #5 on: August 30, 2008, 12:26:23 AM »

I started hemo in Sept. '79, had two transplants, but now I'm back on hemo. 
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1979 Diagnosed with kidney failure
1979 Right arm fistula
1979 Start hemodialysis
1980 CAPD catheter
1980 Start CAPD
1989 Cadaveric kidney transplant
1995 2nd cadaveric  kidney transplant
2007 Start hemodialysis
2010 Still drawin' wind
del
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« Reply #6 on: August 30, 2008, 09:49:02 AM »

Sometime this month (August 2008) marked hubby's 11th year on dialysis!! And he's hoping for many more!!!!
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kevno
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« Reply #7 on: August 31, 2008, 02:02:12 PM »

Longest patient I know is Jill she started one month after me July 1977 she as never even been called for a transplant. I had that 6 year break :-\.
What about the Oldest (apart from Kitkatz and Rerun ;) ) a man on our unit was 90 but he only survived 6 months on haemo.
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But this little saying keeps me going!!

"RENAL PATIENTS NEVER GIVE UP!!!!!!"
kitkatz
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« Reply #8 on: August 31, 2008, 07:49:50 PM »

Why thank you Kevno, I had no idea I was OLD!  :Kit n Stik; :Kit n Stik; :Kit n Stik;




Seriously, a lot of people tell you they have been on dialysis twenty years, when they had a transplant for anywhere from 5 to 15 of those years.  Those transplant years do not count as years on dialysis, people!   Yes, it is a treatment, but it is not dialysis.  I always look at years with a rather jaundiced eye.


Zach you are my hero!


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Ivanova: "Old Egyptian blessing: May God stand between you and harm in all the empty places you must walk." Babylon 5

Remember your present situation is not your final destination.

"If we don't find a way out of this soon, I'm gonna lose it. Lose it... It means go crazy, nuts, insane, bonzo, no longer in possession of ones faculties, three fries short of a Happy Meal, wacko!" Jack O'Neill - SG-1
Zach
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"Still crazy after all these years."

« Reply #9 on: August 31, 2008, 08:26:01 PM »


Zach you are my hero!


 :-*

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In-center hemodialysis since 1982--32 YEARS on March 3, 2014 !!
~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~
No transplant.  Not yet, anyway.  Only decided to be listed on 11/9/06    ;)
Work full time.  I make films.

Just the facts: 75 kgs. (about 165 lbs.)
5 hours   3x/wk
600 dialysate flow (Qd)  ~400 blood pump (Qb)
Fresenius Optiflux-180 filter--without reuse
Fresenius 2008T dialysis machine
My KDOQI (+/ -):  2,625 Calories, 90 grams Protein per day.

"Living a life, not an apology."
kevno
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« Reply #10 on: September 01, 2008, 08:13:33 AM »

Never worked it out like that just the years been on dialysis. which is a total of 25 years. Going on 26 years now. If counting transplant years I have been on dialysis for 31years nearly 32years. Which a transplant is just another kind of treatment according to epoman.
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But this little saying keeps me going!!

"RENAL PATIENTS NEVER GIVE UP!!!!!!"
okarol
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« Reply #11 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
* Jill Schofield marks 25 years on dialysis. Jill, 57, began dialysis in 1982. http://ihatedialysis.com/forum/index.php?topic=6415.0
* Robert Bryden began PD in 1976, at 19 years of age. http://ihatedialysis.com/forum/index.php?topic=2106.0
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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.
Now needs a new kidney, 7 yr transplant lost due to rejection.
She started PD Sept. 2013
Searching for a living donor using social media, friends, family.
Her story ---> https://www.facebook.com/WantedKidneyDonor
Jenna is an artist, she loves music, is a fan of ComicCon, and has been writing stories since she was little.
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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« Reply #12 on: September 17, 2008, 06:04:26 PM »

My Marvin has been battling ESRD since March of 1995; however, he hasn't been "on" dialysis that entire time.  He had a three-year-and-three-month reprieve when he had a transplant (July 2000 - October 2003).  If you add up just his time on dialysis (5 years and 6 months the first time and now 4 years and 11 months this last time), he's at 10 years and 5 months currently.  If he doesn't get another transplant (and he's back on that list again!!!), he said he wants to be THE longest surviving dialysis patient.
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okarol
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« Reply #13 on: November 29, 2008, 02:00:34 PM »


Alex DiPasquale, a former assistant Monroe County executive, was the subject of the Aug. 9 column. He's been on dialysis for 31 years, and over time, his health has suffered. He's now blind and dealing with other health issues.
Three months ago, Alex described himself as the "happiest man in the world." He still is, I'm pleased to report.
"I am blessed because of the love of my family, my friends and my God," he wrote me this week. "I am so thankful for the joy and happiness they bring to my life each and every day."
(Nov. 2008) http://www.democratandchronicle.com/article/20081129/NEWS0202/811290343/1002/NEWS
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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.
Now needs a new kidney, 7 yr transplant lost due to rejection.
She started PD Sept. 2013
Searching for a living donor using social media, friends, family.
Her story ---> https://www.facebook.com/WantedKidneyDonor
Jenna is an artist, she loves music, is a fan of ComicCon, and has been writing stories since she was little.
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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« Reply #14 on: November 30, 2008, 04:44:53 PM »

I have 2 long time patients on Hemo.  One has been on for 29 years, and the other for 31.  They are both in pretty decent general health, both working.  Both have fistulas. The 29 year patient is on her 1 and only fistula.  These 2 patients have taught me more thanI ever knew about dialysis... As far as oldest, we have man in the clinic who is 93!!!  He gets a ride, but he walks in and out by himself, never a walker or a wheelchair...Also has a fistula.
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Vicki
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My dear daughter

« Reply #15 on: December 02, 2008, 07:58:42 AM »

I started dialysis November of 1988, I had a 12 year break when I had a transplant, and I have been on dialysis again since 2006.  It's been over 20 years.  Most times it doesn't seem that long, but then there are days...
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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
okarol
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« Reply #16 on: February 17, 2009, 10:08:52 AM »

Ken Sharp, a 52-year-old Peterborough man, has survived dialysis for nearly 33 years. http://ihatedialysis.com/forum/index.php?topic=12505.0
« Last Edit: March 30, 2010, 01:10:14 PM 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.
Now needs a new kidney, 7 yr transplant lost due to rejection.
She started PD Sept. 2013
Searching for a living donor using social media, friends, family.
Her story ---> https://www.facebook.com/WantedKidneyDonor
Jenna is an artist, she loves music, is a fan of ComicCon, and has been writing stories since she was little.
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
lola
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I can fly!!!

« Reply #17 on: February 17, 2009, 10:14:42 AM »

I need to have Otto reads this, as we are both thinking that with a pra of 100% and them saying he can't do IVIG and Plasmapherisous(sp?) we are trying to adjust to Dialysis for life. As long as he can keep :sluff; and working he's ok with it
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kitkatz
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« Reply #18 on: February 17, 2009, 04:05:14 PM »

Baby, I am stuck there too, dialysis for the rest of my life. *Sigh* But I am along for the ride!  :kickstart;
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Ivanova: "Old Egyptian blessing: May God stand between you and harm in all the empty places you must walk." Babylon 5

Remember your present situation is not your final destination.

"If we don't find a way out of this soon, I'm gonna lose it. Lose it... It means go crazy, nuts, insane, bonzo, no longer in possession of ones faculties, three fries short of a Happy Meal, wacko!" Jack O'Neill - SG-1
monrein
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Might as well smile

« Reply #19 on: February 17, 2009, 04:23:58 PM »


Ken Sharp, a 52-year-old Peterborough man, has survived dialysis for nearly 33 years. http://ihatedialysis.com/forum/index.php?topic=12505.0

Peterborough is a beautiful medium sized town on the way to our cottage.  Lots of lakes to enjoy and my husband sometimes goes to lacrosse matches there. 
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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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« Reply #20 on: February 21, 2009, 07:31:53 PM »

Whenever that question is asked "How long do people survive on dialysis?" my mind automatically goes to "How long do people survive on dialysis before dialysis eventually kills them?"

To clarify in my mind, do most people die BECAUSE of dialysis related issues? Or do they eventually die of something else and still happen to be on dialysis?

I hope I can live a normal life with this treatment. I can understand some physical changes here and there because of dialysis but I hope it doesn't mean they are necessarily life-threatening changes.

??????? ???
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JUST KEEP GOING.
March 2009: NxStage Pureflow Home Dialysis 5-6 x's week
Sept 2008: In center dialysis
Sept 2008: Left kidney removed (bladder cancer)
April 2006: Right kidney removed (bladder cancer). Chemo for lymph node mets.
April 2004: Bladder removed plus hysterectomy & neobladder made (bladder cancer)
Feb 1994: Original bladder cancer diagnosis & beginning of this journey

www.marykay.com/wramsay
kitkatz
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« Reply #21 on: February 22, 2009, 10:20:46 AM »

Most doctors will tell you dialysis patients are in a race against heart problems, before anything else.  That is why most of us are taking aspirin and some sort of cholesterol pill, plus BP meds.
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Ivanova: "Old Egyptian blessing: May God stand between you and harm in all the empty places you must walk." Babylon 5

Remember your present situation is not your final destination.

"If we don't find a way out of this soon, I'm gonna lose it. Lose it... It means go crazy, nuts, insane, bonzo, no longer in possession of ones faculties, three fries short of a Happy Meal, wacko!" Jack O'Neill - SG-1
Zach
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"Still crazy after all these years."

« Reply #22 on: February 22, 2009, 11:52:07 AM »


To clarify in my mind, do most people die BECAUSE of dialysis related issues? Or do they eventually die of something else and still happen to be on dialysis?


It may depend on how healthy a lifestyle you led before CKD.

8)
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In-center hemodialysis since 1982--32 YEARS on March 3, 2014 !!
~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~
No transplant.  Not yet, anyway.  Only decided to be listed on 11/9/06    ;)
Work full time.  I make films.

Just the facts: 75 kgs. (about 165 lbs.)
5 hours   3x/wk
600 dialysate flow (Qd)  ~400 blood pump (Qb)
Fresenius Optiflux-180 filter--without reuse
Fresenius 2008T dialysis machine
My KDOQI (+/ -):  2,625 Calories, 90 grams Protein per day.

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

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« Reply #23 on: March 14, 2009, 01:12:07 PM »


Lyria Ramos celebrates 30 years on dialysis http://ihatedialysis.com/forum/index.php?topic=12888.0
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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.
Now needs a new kidney, 7 yr transplant lost due to rejection.
She started PD Sept. 2013
Searching for a living donor using social media, friends, family.
Her story ---> https://www.facebook.com/WantedKidneyDonor
Jenna is an artist, she loves music, is a fan of ComicCon, and has been writing stories since she was little.
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 #24 on: March 22, 2009, 12:09:59 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
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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.
Now needs a new kidney, 7 yr transplant lost due to rejection.
She started PD Sept. 2013
Searching for a living donor using social media, friends, family.
Her story ---> https://www.facebook.com/WantedKidneyDonor
Jenna is an artist, she loves music, is a fan of ComicCon, and has been writing stories since she was little.
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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